Re: LONG update and religious content

[Guest guest]

, Your honesty is quite beautiful to behold and your faith too. Your

rain story brought a flood of rain thoughts to my mind. First that wonderful

line from the Jesuit poet Gerald Manley Hopkins who struggled with deep

depression, " O Thou Lord of my life, send my roots rain. " Then other rain

associations. So many people equate rain with a dreary day but I never have.

To me it has always been refreshment and healing. Water as the mother

liquid. Water as solvent. Partly that is because I grew up on a farm where

drought was the worst thing that could happen. We prayed for rain so often

and when it came, each drop was precious as silver falling from heaven. Now

I am praying for a healing rain for you and for peace and wisdom in the

decision you must make.

SLUMBERS NOT NOR SLEEPS

dusk spreads like a bruise across the sky;

this one-window hospital view slowly drapes

itself in blueblack: night and the world turns

opaque to my eyes

but not Yours

praise Yours!

praise the unblinking Monitor of the universe

seeing all skies, stars, room 5406

and the long dark stretch into pain and

the IV dripping dripping soft as spring rain.

--Barbara Seaman

_____

From: LILQT4U1984@...

Sent: Tuesday, January 04, 2005 9:47 AM

To:

Subject: LONG update and religious content

Just take this for what it is...a synopsis of how my day in Cleveland went.

This is my release and the more I talk about it the easier it is for me to

accept.

Mom and I were up at 4:30 to get ready and get the shuttle over to the

Nashville airport at 5:45. There was a little breakfast at the hotel. I had

some

of a blueberry muffin and OJ. The flight was turbulent because of storms but

not too bad or long. We arrived and Denis picked us up and took us directly

to

the clinic. I was at my first appt about 20 mins early. We waited some time

and then my mom asked if the doc was running on time as I had another appt

in

40 mins. She checked and said that he was running 30 mins behind but that

they would go ahead and take me back. It took a little while to get

everything

updated in the computer with meds,etc. Dr. came in a little while

later and was ever so nice. My GI who referred me back to him had never

sent

any letter or any records like they said they were going to back in early

Nov.

Everything was suppose to be in place and so that the doc would be prepared

when he saw me. Anyways..he had no idea why I was there so it took some

time

to explain and share with him the records that I had with me from home. The

most important report he needed I didn't have which is the colonic

manometry to

see how much of the colon is involved to advice for surgery. As it stands I

have been given two viable options for surgery to improve my Intestinal

Pseudo Obstruction. The first being a partial colectomy. It would be a

bikin line

cut, similar to a C-section but a smaller incision and then a navel cut to

disect the colon before removal thru the opening. I would be given a

catheter

epidural that would be put in after I was asleep so that when I awake I

will

be all numb. I would have a catheter so that I wouldn't have to get out of

bed

for a couple of days. In my case I will have to have the catheter to remain

in quite a few days as I have really bad complications with the anesthetics

and my bladder. I won't be able to strain to void after having major

abdominal

surgery. There would be no nasal tubes or drainage tubes. It would be about

a week hospitalization.The other option which my surgeon has always done

second is something really cutting edge called an apendecostomy. It is a

more

minor procedure that involves a navel cut and a cut at the appedix. The

appendix

is brought to the service and cut level with the skin. It is left open and

exposed as the appendix is very dry unlike the colon. Each day I would have

to

insert a 10 French catheter into the apendecostomy about 2 inches and

connect it to some tubing and a bag of hung tap water and flush my colon

until all

I am passing is clear.This is much better than a cecostomy as it can't leak

and doesn't require a tube to hold the opening open and no dressing is

requird

either. He said your appendix is about the size of a top of a pen. This

would be a shorter procedure and hospital stay. My surgeon has patients

that

have gone both routes and have been very happy. He has had no complications

with

either. There is a 100% success rate for both surgeries for the first year.

There is a 20% chance with the partial colectomy that the prob could

reoccur.

Then you would still have the option to get the apendecostomy. It's really

a

hard decision and I keep changing my mind. I was prepared to have the colon

removed and if that works then I would be cured of the CIP and I wouldn't

have to take any meds or maintence,etc. It's going to come down to what the

gastro tells the surgeon about the functioning of my colon. Dr.

is

calling me Wed. to let me know and to make my arrangements. He was so nice

and

very descriptive and drew pictures of everything so I could really

understand

my options. He really gave me hope because either way I go I have a backup

and

a second option if the first one fails. I'm really trying to not let anyone

influence me but it's hard because everyone does seem to have their

definite

ideas about it.

We rushed thru the skyway; mom pushing me in the wheelchair with her coat

and backpack and purse. Bless her heart! We were late to my mito doc's appt

and

actually passed him leaving the floor to go to lunch when we arrived. The

nurse got me checked in and put me in a room and paged Dr. C. We had not

had

anytime to stop for lunch and it was nearly 1 o'clock. The nurse offered us

some apple juice which we gladly accepted. Dr. C came in a little later and

was

very nice and we discussed the surgical consult and my weight and what the

doc in NY had said,etc. He was going to order labs but I had labs from last

week that showed my Albumin to be within normal range although in the lower

norm. He was satisfied with that as it was still normal. The appt was

wrapping up

and I proceeded to tell him that I had had my first abnormal

echocardiogram.

I gave him a copy of the report and he began typing it all into the

computer

but never saying anything. It was quiet for awhile and then just suddenly

out of the blue he turned to me and said " this is very, very, concerning! "

" You

are in heart failure, and you are going die. " " Your PCP can put you on

Lanoxin to make your heart contract better, but it will NOT stop the

progression

of this heart failure. It is irreversible. " " If Dr. has

reccomended

surgery then you need to do it NOW. " I was in a state of shock and was

shaking all over on the verge of tears. I know I take him alot different

than my

mom does but he has a way of almost coming across like a dad when you're in

trouble or something. I have very close relationships with my physicians

and I

take things to heart. I think it wasn't that he was mad but that he was

really

upset and thru his emotions it came thru to me as being very stern.My mom

asked him what he would reccomend as the Boost didn't put weight on me, the

TPN

didn't put weight on me and I'm currently eating as much as I physically

can. He looked at us and very distraughtly said he had no other ideas for

me. I

knew that my EF being 35% was bad, but until a doc. says it to your face

that

you have heart failure and it's going to kill you it's just not the same.

Reality BITES! I was so shook up! My mom then asked him when he would be in

town as we would want a co-admission with him so that he could take care of

my

metabolic needs. He said that was a great idea and he would take care of

it.

But when he looked at his schedule he said he would only be in town thru

the

13th of Jan and then gone here and there much of the next few months. He

said

I was not to wait on him for this surgery. At this point my mom is asking

if

we should even go home at all. He went out into the hall to call Dr.

and was gone for sometime. When he came back in he said that the

paging

system was down thru-out the clinic and that noone was answering the office

phone line. He also asked if we had heard of a drug called Thalidomide.

Those of

you who are older than me most likely know all about it. But for those who

were like me and never heard of it I will share the story that Dr. C shared

with me. He said it was a drug that came out in the 1950's and women who

were

preg. took it for nausea because it worked so well. It was never available

in

the US but women would go to Europe etc and obtain it. Well it caused these

horrible birth defects and shortened limbs,etc got a really bad reputation.

Then in the 1960's a woman in Israel who had leprosy went to a doc and he

gave

her this same med and it cured the rash and took away all her pain. Since

then

it has been studied and used in 2 types of cancer and now for AIDS patients

who are losing weight. Something about it helps to halt the weight loss

process. Dr. C has been studying it and using it for 10 years. He said it is

very

safe as long as you aren't pregnant or don't get pregnant. The only side

effect is sedation and it would be given at bedtime so could actually

benefit me

there because I can't sleep well. I aggreed to give it a try so he went out

and got a big packet that I had to bring home and study and a disk for the

computer to fill out the forms. The thing is you have to get weekly

pregnancy

tests done for the first 4 weeks and then monthly after that. You also have

to

prove you are using 2 forms of birth control. Dr. C said abstinence counted

as

one. It was nearly 2 'o'clock by this time and Denis was waiting to take us

back to the airport. We were really in a bind what to do. Dr. C called Dr.

one more time from the room and got him on the line. The

conversation

was very direct, just exactly how he gave it to me. " You saw my patient

today and she is here with me now. She has a severe

cardiomyopathy

due to the weight loss with an EF of 35%. I don't think anesthesia would be

a

HUGE risk but she needs this surgery done asap. When Dr. C hung up the

phone

he said Dr. will call you Wed and it will be the first of next

week. Everything just went WAY, WAY fast! I have complete and total trust

in Dr.

as well as my anesthesiologist but I just thought I was going to

have more time. I asked Dr. C about repeating my gluthatione levels since

I've

been taking the NAC for 3 months now. He stared at me blankly for a few

moments and then said not to waste my blood. I must have gotten a funny

look on

my face for then he said " I'm serious. " " You can't afford to loose one

drop

of your blood. " I remember back when I had the bone marrow biopsy and I was

given the same talk then. He said that it was eating my bone marrow and

then

would go to my heart and then my brain and would not be here anymore. Dr. C

told us it was no use to stay just to take our flight home and we could

finish

the rest over the phone. Now I'm in a holding pattern to find out when I'm

going back. It will prob. be this weekend so I can be prepped for the

surgery

the first of next week.

We arrived at the airport (still have had nothing to eat since the little

muffin at 5:30 a.m.) Quickly called my sis and dad and then it was time to

board the plane. We got into Nashville and stopped on the way and ate fast

food

in the car. It was after my bedtime when we got in, but I was glad to be

home.

We had recieved a belated C-mas gift from my aunt and uncle who were unable

to get together with over the holidays due to the snowstorm. My mom opened

it

right before I went to lay down and it was a Christian CD by W.

called Healing Rain. There was also a book by the same title to go

with it.

It gave me cold chills. If you remember the story I shared a while back

about the young boy, Matt Ross, who had cancer and wrote this same artist

and he

sent a CD and autographed poster for Matt. Unfortunately the very day it

arrived he passed away. The title of that CD was " I'll Lead You Home. " It

was just

like a sign from God as my mom puts it that He is going to send his healing

rains for me this year. The song has so much meaning and was just what we

needed. I also don't think it was a coincidence that it was pouring rain

yesterday in every place we were from Nashville, to Owensboro, to

Cleveland.

It is my prayer- Lord POUR out your healing rain on me.

Thank you for your prayers as always, love,

[Guest guest]

Thanks for the warning on the religious content - it was beautiful

even to those of us who are not in a religious camp.

It is amazing what little bedside manner some doctors have. I hope

you find the strength to work with all of your doctors and your

family to find the best solution for you.

It sounds like your brain is still here; I'm surprised they could

have such a dire prognosis for you if you're still so sharp-witted.

When I have a slow heart beat (less than 50 bpm), I can't even hold a

conversation, let alone type at a computer. Please don't make major

life decisions based on one individual test only, though I'm sure you

guys are doing the right things and checking all options.

Keep the faith, and know that all your friends and family are pulling

for you.

Take care,

RH

>

> Just take this for what it is...a synopsis of how my day in

Cleveland went.

> This is my release and the more I talk about it the easier it is

for me to

> accept.

>

> Mom and I were up at 4:30 to get ready and get the shuttle over to

the

> Nashville airport at 5:45. There was a little breakfast at the

hotel. I had some

> of a blueberry muffin and OJ. The flight was turbulent because of

storms but

> not too bad or long. We arrived and Denis picked us up and took us

directly to

> the clinic. I was at my first appt about 20 mins early. We waited

some time

> and then my mom asked if the doc was running on time as I had

another appt in

> 40 mins. She checked and said that he was running 30 mins behind

but that

> they would go ahead and take me back. It took a little while to

get everything

> updated in the computer with meds,etc. Dr. came in a

little while

> later and was ever so nice. My GI who referred me back to him had

never sent

> any letter or any records like they said they were going to back

in early Nov.

> Everything was suppose to be in place and so that the doc would be

prepared

> when he saw me. Anyways..he had no idea why I was there so it took

some time

> to explain and share with him the records that I had with me from

home. The

> most important report he needed I didn't have which is the colonic

manometry to

> see how much of the colon is involved to advice for surgery. As it

stands I

> have been given two viable options for surgery to improve my

Intestinal

> Pseudo Obstruction. The first being a partial colectomy. It would

be a bikin line

> cut, similar to a C-section but a smaller incision and then a

navel cut to

> disect the colon before removal thru the opening. I would be given

a catheter

> epidural that would be put in after I was asleep so that when I

awake I will

> be all numb. I would have a catheter so that I wouldn't have to

get out of bed

> for a couple of days. In my case I will have to have the catheter

to remain

> in quite a few days as I have really bad complications with the

anesthetics

> and my bladder. I won't be able to strain to void after having

major abdominal

> surgery. There would be no nasal tubes or drainage tubes. It would

be about

> a week hospitalization.The other option which my surgeon has

always done

> second is something really cutting edge called an apendecostomy.

It is a more

> minor procedure that involves a navel cut and a cut at the

appedix. The appendix

> is brought to the service and cut level with the skin. It is left

open and

> exposed as the appendix is very dry unlike the colon. Each day I

would have to

> insert a 10 French catheter into the apendecostomy about 2 inches

and

> connect it to some tubing and a bag of hung tap water and flush my

colon until all

> I am passing is clear.This is much better than a cecostomy as it

can't leak

> and doesn't require a tube to hold the opening open and no

dressing is requird

> either. He said your appendix is about the size of a top of a

pen. This

> would be a shorter procedure and hospital stay. My surgeon has

patients that

> have gone both routes and have been very happy. He has had no

complications with

> either. There is a 100% success rate for both surgeries for the

first year.

> There is a 20% chance with the partial colectomy that the prob

could reoccur.

> Then you would still have the option to get the apendecostomy.

It's really a

> hard decision and I keep changing my mind. I was prepared to have

the colon

> removed and if that works then I would be cured of the CIP and I

wouldn't

> have to take any meds or maintence,etc. It's going to come down to

what the

> gastro tells the surgeon about the functioning of my colon. Dr.

is

> calling me Wed. to let me know and to make my arrangements. He was

so nice and

> very descriptive and drew pictures of everything so I could really

understand

> my options. He really gave me hope because either way I go I have

a backup and

> a second option if the first one fails. I'm really trying to not

let anyone

> influence me but it's hard because everyone does seem to have

their definite

> ideas about it.

> We rushed thru the skyway; mom pushing me in the wheelchair with

her coat

> and backpack and purse. Bless her heart! We were late to my mito

doc's appt and

> actually passed him leaving the floor to go to lunch when we

arrived. The

> nurse got me checked in and put me in a room and paged Dr. C. We

had not had

> anytime to stop for lunch and it was nearly 1 o'clock. The nurse

offered us

> some apple juice which we gladly accepted. Dr. C came in a little

later and was

> very nice and we discussed the surgical consult and my weight and

what the

> doc in NY had said,etc. He was going to order labs but I had labs

from last

> week that showed my Albumin to be within normal range although in

the lower

> norm. He was satisfied with that as it was still normal. The appt

was wrapping up

> and I proceeded to tell him that I had had my first abnormal

echocardiogram.

> I gave him a copy of the report and he began typing it all into

the computer

> but never saying anything. It was quiet for awhile and then just

suddenly

> out of the blue he turned to me and said " this is very, very,

concerning! " " You

> are in heart failure, and you are going die. " " Your PCP can put

you on

> Lanoxin to make your heart contract better, but it will NOT stop

the progression

> of this heart failure. It is irreversible. " " If Dr. has

reccomended

> surgery then you need to do it NOW. " I was in a state of shock and

was

> shaking all over on the verge of tears. I know I take him alot

different than my

> mom does but he has a way of almost coming across like a dad when

you're in

> trouble or something. I have very close relationships with my

physicians and I

> take things to heart. I think it wasn't that he was mad but that

he was really

> upset and thru his emotions it came thru to me as being very

stern.My mom

> asked him what he would reccomend as the Boost didn't put weight

on me, the TPN

> didn't put weight on me and I'm currently eating as much as I

physically

> can. He looked at us and very distraughtly said he had no other

ideas for me. I

> knew that my EF being 35% was bad, but until a doc. says it to

your face that

> you have heart failure and it's going to kill you it's just not

the same.

> Reality BITES! I was so shook up! My mom then asked him when he

would be in

> town as we would want a co-admission with him so that he could

take care of my

> metabolic needs. He said that was a great idea and he would take

care of it.

> But when he looked at his schedule he said he would only be in

town thru the

> 13th of Jan and then gone here and there much of the next few

months. He said

> I was not to wait on him for this surgery. At this point my mom is

asking if

> we should even go home at all. He went out into the hall to call

Dr.

> and was gone for sometime. When he came back in he said

that the paging

> system was down thru-out the clinic and that noone was answering

the office

> phone line. He also asked if we had heard of a drug called

Thalidomide. Those of

> you who are older than me most likely know all about it. But for

those who

> were like me and never heard of it I will share the story that Dr.

C shared

> with me. He said it was a drug that came out in the 1950's and

women who were

> preg. took it for nausea because it worked so well. It was never

available in

> the US but women would go to Europe etc and obtain it. Well it

caused these

> horrible birth defects and shortened limbs,etc got a really bad

reputation.

> Then in the 1960's a woman in Israel who had leprosy went to a doc

and he gave

> her this same med and it cured the rash and took away all her

pain. Since then

> it has been studied and used in 2 types of cancer and now for AIDS

patients

> who are losing weight. Something about it helps to halt the weight

loss

> process. Dr. C has been studying it and using it for 10 years. He

said it is very

> safe as long as you aren't pregnant or don't get pregnant. The only

side

> effect is sedation and it would be given at bedtime so could

actually benefit me

> there because I can't sleep well. I aggreed to give it a try so he

went out

> and got a big packet that I had to bring home and study and a disk

for the

> computer to fill out the forms. The thing is you have to get

weekly pregnancy

> tests done for the first 4 weeks and then monthly after that. You

also have to

> prove you are using 2 forms of birth control. Dr. C said

abstinence counted as

> one. It was nearly 2 'o'clock by this time and Denis was waiting

to take us

> back to the airport. We were really in a bind what to do. Dr. C

called Dr.

> one more time from the room and got him on the line. The

conversation

> was very direct, just exactly how he gave it to me. " You saw my

patient

> today and she is here with me now. She has a severe

cardiomyopathy

> due to the weight loss with an EF of 35%. I don't think anesthesia

would be a

> HUGE risk but she needs this surgery done asap. When Dr. C hung up

the phone

> he said Dr. will call you Wed and it will be the first

of next

> week. Everything just went WAY, WAY fast! I have complete and

total trust in Dr.

> as well as my anesthesiologist but I just thought I was

going to

> have more time. I asked Dr. C about repeating my gluthatione

levels since I've

> been taking the NAC for 3 months now. He stared at me blankly for

a few

> moments and then said not to waste my blood. I must have gotten a

funny look on

> my face for then he said " I'm serious. " " You can't afford to

loose one drop

> of your blood. " I remember back when I had the bone marrow biopsy

and I was

> given the same talk then. He said that it was eating my bone

marrow and then

> would go to my heart and then my brain and would not be here

anymore. Dr. C

> told us it was no use to stay just to take our flight home and we

could finish

> the rest over the phone. Now I'm in a holding pattern to find out

when I'm

> going back. It will prob. be this weekend so I can be prepped for

the surgery

> the first of next week.

> We arrived at the airport (still have had nothing to eat since the

little

> muffin at 5:30 a.m.) Quickly called my sis and dad and then it was

time to

> board the plane. We got into Nashville and stopped on the way and

ate fast food

> in the car. It was after my bedtime when we got in, but I was glad

to be home.

>

> We had recieved a belated C-mas gift from my aunt and uncle who

were unable

> to get together with over the holidays due to the snowstorm. My

mom opened it

> right before I went to lay down and it was a Christian CD by

W.

> called Healing Rain. There was also a book by the same title

to go with it.

> It gave me cold chills. If you remember the story I shared a while

back

> about the young boy, Matt Ross, who had cancer and wrote this same

artist and he

> sent a CD and autographed poster for Matt. Unfortunately the very

day it

> arrived he passed away. The title of that CD was " I'll Lead You

Home. " It was just

> like a sign from God as my mom puts it that He is going to send

his healing

> rains for me this year. The song has so much meaning and was just

what we

> needed. I also don't think it was a coincidence that it was

pouring rain

> yesterday in every place we were from Nashville, to Owensboro, to

Cleveland.

> It is my prayer- Lord POUR out your healing rain on me.

>

> Thank you for your prayers as always, love,

>

>

>

>

[Guest guest]

I can't believe your strength and that of your mom. You are always there for

others and always can see the rainbow in every situation.

I will pray that this is the year of the healing rain and that you will see

many rainbows.

Hugs,

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Tue, 4 Jan 2005 10:46:30 EST

> To:

> Subject: LONG update and religious content

>

>

> Just take this for what it is...a synopsis of how my day in Cleveland went.

> This is my release and the more I talk about it the easier it is for me to

> accept.

>

> Mom and I were up at 4:30 to get ready and get the shuttle over to the

> Nashville airport at 5:45. There was a little breakfast at the hotel. I had

> some

> of a blueberry muffin and OJ. The flight was turbulent because of storms but

> not too bad or long. We arrived and Denis picked us up and took us directly

> to

> the clinic. I was at my first appt about 20 mins early. We waited some time

> and then my mom asked if the doc was running on time as I had another appt in

> 40 mins. She checked and said that he was running 30 mins behind but that

> they would go ahead and take me back. It took a little while to get

> everything

> updated in the computer with meds,etc. Dr. came in a little while

> later and was ever so nice. My GI who referred me back to him had never sent

> any letter or any records like they said they were going to back in early

> Nov.

> Everything was suppose to be in place and so that the doc would be prepared

> when he saw me. Anyways..he had no idea why I was there so it took some time

> to explain and share with him the records that I had with me from home. The

> most important report he needed I didn't have which is the colonic manometry

> to

> see how much of the colon is involved to advice for surgery. As it stands I

> have been given two viable options for surgery to improve my Intestinal

> Pseudo Obstruction. The first being a partial colectomy. It would be a bikin

> line

> cut, similar to a C-section but a smaller incision and then a navel cut to

> disect the colon before removal thru the opening. I would be given a catheter

> epidural that would be put in after I was asleep so that when I awake I will

> be all numb. I would have a catheter so that I wouldn't have to get out of

> bed

> for a couple of days. In my case I will have to have the catheter to remain

> in quite a few days as I have really bad complications with the anesthetics

> and my bladder. I won't be able to strain to void after having major

> abdominal

> surgery. There would be no nasal tubes or drainage tubes. It would be about

> a week hospitalization.The other option which my surgeon has always done

> second is something really cutting edge called an apendecostomy. It is a more

> minor procedure that involves a navel cut and a cut at the appedix. The

> appendix

> is brought to the service and cut level with the skin. It is left open and

> exposed as the appendix is very dry unlike the colon. Each day I would have

> to

> insert a 10 French catheter into the apendecostomy about 2 inches and

> connect it to some tubing and a bag of hung tap water and flush my colon

> until all

> I am passing is clear.This is much better than a cecostomy as it can't leak

> and doesn't require a tube to hold the opening open and no dressing is

> requird

> either. He said your appendix is about the size of a top of a pen. This

> would be a shorter procedure and hospital stay. My surgeon has patients that

> have gone both routes and have been very happy. He has had no complications

> with

> either. There is a 100% success rate for both surgeries for the first year.

> There is a 20% chance with the partial colectomy that the prob could reoccur.

> Then you would still have the option to get the apendecostomy. It's really a

> hard decision and I keep changing my mind. I was prepared to have the colon

> removed and if that works then I would be cured of the CIP and I wouldn't

> have to take any meds or maintence,etc. It's going to come down to what the

> gastro tells the surgeon about the functioning of my colon. Dr. is

> calling me Wed. to let me know and to make my arrangements. He was so nice

> and

> very descriptive and drew pictures of everything so I could really understand

> my options. He really gave me hope because either way I go I have a backup

> and

> a second option if the first one fails. I'm really trying to not let anyone

> influence me but it's hard because everyone does seem to have their definite

> ideas about it.

> We rushed thru the skyway; mom pushing me in the wheelchair with her coat

> and backpack and purse. Bless her heart! We were late to my mito doc's appt

> and

> actually passed him leaving the floor to go to lunch when we arrived. The

> nurse got me checked in and put me in a room and paged Dr. C. We had not had

> anytime to stop for lunch and it was nearly 1 o'clock. The nurse offered us

> some apple juice which we gladly accepted. Dr. C came in a little later and

> was

> very nice and we discussed the surgical consult and my weight and what the

> doc in NY had said,etc. He was going to order labs but I had labs from last

> week that showed my Albumin to be within normal range although in the lower

> norm. He was satisfied with that as it was still normal. The appt was

> wrapping up

> and I proceeded to tell him that I had had my first abnormal echocardiogram.

> I gave him a copy of the report and he began typing it all into the computer

> but never saying anything. It was quiet for awhile and then just suddenly

> out of the blue he turned to me and said " this is very, very, concerning! "

> " You

> are in heart failure, and you are going die. " " Your PCP can put you on

> Lanoxin to make your heart contract better, but it will NOT stop the

> progression

> of this heart failure. It is irreversible. " " If Dr. has reccomended

> surgery then you need to do it NOW. " I was in a state of shock and was

> shaking all over on the verge of tears. I know I take him alot different than

> my

> mom does but he has a way of almost coming across like a dad when you're in

> trouble or something. I have very close relationships with my physicians and

> I

> take things to heart. I think it wasn't that he was mad but that he was

> really

> upset and thru his emotions it came thru to me as being very stern.My mom

> asked him what he would reccomend as the Boost didn't put weight on me, the

> TPN

> didn't put weight on me and I'm currently eating as much as I physically

> can. He looked at us and very distraughtly said he had no other ideas for me.

> I

> knew that my EF being 35% was bad, but until a doc. says it to your face that

> you have heart failure and it's going to kill you it's just not the same.

> Reality BITES! I was so shook up! My mom then asked him when he would be in

> town as we would want a co-admission with him so that he could take care of

> my

> metabolic needs. He said that was a great idea and he would take care of it.

> But when he looked at his schedule he said he would only be in town thru the

> 13th of Jan and then gone here and there much of the next few months. He said

> I was not to wait on him for this surgery. At this point my mom is asking if

> we should even go home at all. He went out into the hall to call Dr.

> and was gone for sometime. When he came back in he said that the

> paging

> system was down thru-out the clinic and that noone was answering the office

> phone line. He also asked if we had heard of a drug called Thalidomide. Those

> of

> you who are older than me most likely know all about it. But for those who

> were like me and never heard of it I will share the story that Dr. C shared

> with me. He said it was a drug that came out in the 1950's and women who were

> preg. took it for nausea because it worked so well. It was never available in

> the US but women would go to Europe etc and obtain it. Well it caused these

> horrible birth defects and shortened limbs,etc got a really bad reputation.

> Then in the 1960's a woman in Israel who had leprosy went to a doc and he

> gave

> her this same med and it cured the rash and took away all her pain. Since

> then

> it has been studied and used in 2 types of cancer and now for AIDS patients

> who are losing weight. Something about it helps to halt the weight loss

> process. Dr. C has been studying it and using it for 10 years. He said it is

> very

> safe as long as you aren't pregnant or don't get pregnant. The only side

> effect is sedation and it would be given at bedtime so could actually benefit

> me

> there because I can't sleep well. I aggreed to give it a try so he went out

> and got a big packet that I had to bring home and study and a disk for the

> computer to fill out the forms. The thing is you have to get weekly pregnancy

> tests done for the first 4 weeks and then monthly after that. You also have

> to

> prove you are using 2 forms of birth control. Dr. C said abstinence counted

> as

> one. It was nearly 2 'o'clock by this time and Denis was waiting to take us

> back to the airport. We were really in a bind what to do. Dr. C called Dr.

> one more time from the room and got him on the line. The

> conversation

> was very direct, just exactly how he gave it to me. " You saw my patient

> today and she is here with me now. She has a severe

> cardiomyopathy

> due to the weight loss with an EF of 35%. I don't think anesthesia would be a

> HUGE risk but she needs this surgery done asap. When Dr. C hung up the phone

> he said Dr. will call you Wed and it will be the first of next

> week. Everything just went WAY, WAY fast! I have complete and total trust in

> Dr.

> as well as my anesthesiologist but I just thought I was going to

> have more time. I asked Dr. C about repeating my gluthatione levels since

> I've

> been taking the NAC for 3 months now. He stared at me blankly for a few

> moments and then said not to waste my blood. I must have gotten a funny look

> on

> my face for then he said " I'm serious. " " You can't afford to loose one drop

> of your blood. " I remember back when I had the bone marrow biopsy and I was

> given the same talk then. He said that it was eating my bone marrow and then

> would go to my heart and then my brain and would not be here anymore. Dr. C

> told us it was no use to stay just to take our flight home and we could

> finish

> the rest over the phone. Now I'm in a holding pattern to find out when I'm

> going back. It will prob. be this weekend so I can be prepped for the surgery

> the first of next week.

> We arrived at the airport (still have had nothing to eat since the little

> muffin at 5:30 a.m.) Quickly called my sis and dad and then it was time to

> board the plane. We got into Nashville and stopped on the way and ate fast

> food

> in the car. It was after my bedtime when we got in, but I was glad to be

> home.

>

> We had recieved a belated C-mas gift from my aunt and uncle who were unable

> to get together with over the holidays due to the snowstorm. My mom opened it

> right before I went to lay down and it was a Christian CD by W.

> called Healing Rain. There was also a book by the same title to go with

> it.

> It gave me cold chills. If you remember the story I shared a while back

> about the young boy, Matt Ross, who had cancer and wrote this same artist and

> he

> sent a CD and autographed poster for Matt. Unfortunately the very day it

> arrived he passed away. The title of that CD was " I'll Lead You Home. " It was

> just

> like a sign from God as my mom puts it that He is going to send his healing

> rains for me this year. The song has so much meaning and was just what we

> needed. I also don't think it was a coincidence that it was pouring rain

> yesterday in every place we were from Nashville, to Owensboro, to Cleveland.

> It is my prayer- Lord POUR out your healing rain on me.

>

> Thank you for your prayers as always, love,

>

>

>

>

[Guest guest]

Hi ,

You had quite a day and I can imagine how unsettling it was to hear

Dr. Cohen's distress after seeing your recent echo.

Keep up your faith in the power of those rains and I'll be sending a

prayer or two along for good measure.

Maggie

>

> Just take this for what it is...a synopsis of how my day in

Cleveland went.

> This is my release and the more I talk about it the easier it is

for me to

> accept.

>

> Mom and I were up at 4:30 to get ready and get the shuttle over to

the

> Nashville airport at 5:45. There was a little breakfast at the

hotel. I had some

> of a blueberry muffin and OJ. The flight was turbulent because of

storms but

> not too bad or long. We arrived and Denis picked us up and took

us directly to

> the clinic. I was at my first appt about 20 mins early. We waited

some time

> and then my mom asked if the doc was running on time as I had

another appt in

> 40 mins. She checked and said that he was running 30 mins behind

but that

> they would go ahead and take me back. It took a little while to

get everything

> updated in the computer with meds,etc. Dr. came in a

little while

> later and was ever so nice. My GI who referred me back to him had

never sent

> any letter or any records like they said they were going to back

in early Nov.

> Everything was suppose to be in place and so that the doc would

be prepared

> when he saw me. Anyways..he had no idea why I was there so it

took some time

> to explain and share with him the records that I had with me from

home. The

> most important report he needed I didn't have which is the

colonic manometry to

> see how much of the colon is involved to advice for surgery. As

it stands I

> have been given two viable options for surgery to improve my

Intestinal

> Pseudo Obstruction. The first being a partial colectomy. It would

be a bikin line

> cut, similar to a C-section but a smaller incision and then a

navel cut to

> disect the colon before removal thru the opening. I would be

given a catheter

> epidural that would be put in after I was asleep so that when I

awake I will

> be all numb. I would have a catheter so that I wouldn't have to

get out of bed

> for a couple of days. In my case I will have to have the catheter

to remain

> in quite a few days as I have really bad complications with the

anesthetics

> and my bladder. I won't be able to strain to void after having

major abdominal

> surgery. There would be no nasal tubes or drainage tubes. It

would be about

> a week hospitalization.The other option which my surgeon has

always done

> second is something really cutting edge called an apendecostomy.

It is a more

> minor procedure that involves a navel cut and a cut at the

appedix. The appendix

> is brought to the service and cut level with the skin. It is left

open and

> exposed as the appendix is very dry unlike the colon. Each day I

would have to

> insert a 10 French catheter into the apendecostomy about 2 inches

and

> connect it to some tubing and a bag of hung tap water and flush

my colon until all

> I am passing is clear.This is much better than a cecostomy as it

can't leak

> and doesn't require a tube to hold the opening open and no

dressing is requird

> either. He said your appendix is about the size of a top of a

pen. This

> would be a shorter procedure and hospital stay. My surgeon has

patients that

> have gone both routes and have been very happy. He has had no

complications with

> either. There is a 100% success rate for both surgeries for the

first year.

> There is a 20% chance with the partial colectomy that the prob

could reoccur.

> Then you would still have the option to get the apendecostomy.

It's really a

> hard decision and I keep changing my mind. I was prepared to have

the colon

> removed and if that works then I would be cured of the CIP and I

wouldn't

> have to take any meds or maintence,etc. It's going to come down

to what the

> gastro tells the surgeon about the functioning of my colon. Dr.

is

> calling me Wed. to let me know and to make my arrangements. He

was so nice and

> very descriptive and drew pictures of everything so I could

really understand

> my options. He really gave me hope because either way I go I have

a backup and

> a second option if the first one fails. I'm really trying to not

let anyone

> influence me but it's hard because everyone does seem to have

their definite

> ideas about it.

> We rushed thru the skyway; mom pushing me in the wheelchair with

her coat

> and backpack and purse. Bless her heart! We were late to my mito

doc's appt and

> actually passed him leaving the floor to go to lunch when we

arrived. The

> nurse got me checked in and put me in a room and paged Dr. C. We

had not had

> anytime to stop for lunch and it was nearly 1 o'clock. The nurse

offered us

> some apple juice which we gladly accepted. Dr. C came in a little

later and was

> very nice and we discussed the surgical consult and my weight and

what the

> doc in NY had said,etc. He was going to order labs but I had labs

from last

> week that showed my Albumin to be within normal range although in

the lower

> norm. He was satisfied with that as it was still normal. The appt

was wrapping up

> and I proceeded to tell him that I had had my first abnormal

echocardiogram.

> I gave him a copy of the report and he began typing it all into

the computer

> but never saying anything. It was quiet for awhile and then just

suddenly

> out of the blue he turned to me and said " this is very, very,

concerning! " " You

> are in heart failure, and you are going die. " " Your PCP can put

you on

> Lanoxin to make your heart contract better, but it will NOT stop

the progression

> of this heart failure. It is irreversible. " " If Dr. has

reccomended

> surgery then you need to do it NOW. " I was in a state of shock

and was

> shaking all over on the verge of tears. I know I take him alot

different than my

> mom does but he has a way of almost coming across like a dad when

you're in

> trouble or something. I have very close relationships with my

physicians and I

> take things to heart. I think it wasn't that he was mad but that

he was really

> upset and thru his emotions it came thru to me as being very

stern.My mom

> asked him what he would reccomend as the Boost didn't put weight

on me, the TPN

> didn't put weight on me and I'm currently eating as much as I

physically

> can. He looked at us and very distraughtly said he had no other

ideas for me. I

> knew that my EF being 35% was bad, but until a doc. says it to

your face that

> you have heart failure and it's going to kill you it's just not

the same.

> Reality BITES! I was so shook up! My mom then asked him when he

would be in

> town as we would want a co-admission with him so that he could

take care of my

> metabolic needs. He said that was a great idea and he would take

care of it.

> But when he looked at his schedule he said he would only be in

town thru the

> 13th of Jan and then gone here and there much of the next few

months. He said

> I was not to wait on him for this surgery. At this point my mom

is asking if

> we should even go home at all. He went out into the hall to call

Dr.

> and was gone for sometime. When he came back in he said

that the paging

> system was down thru-out the clinic and that noone was answering

the office

> phone line. He also asked if we had heard of a drug called

Thalidomide. Those of

> you who are older than me most likely know all about it. But for

those who

> were like me and never heard of it I will share the story that

Dr. C shared

> with me. He said it was a drug that came out in the 1950's and

women who were

> preg. took it for nausea because it worked so well. It was never

available in

> the US but women would go to Europe etc and obtain it. Well it

caused these

> horrible birth defects and shortened limbs,etc got a really bad

reputation.

> Then in the 1960's a woman in Israel who had leprosy went to a

doc and he gave

> her this same med and it cured the rash and took away all her

pain. Since then

> it has been studied and used in 2 types of cancer and now for

AIDS patients

> who are losing weight. Something about it helps to halt the weight

loss

> process. Dr. C has been studying it and using it for 10 years. He

said it is very

> safe as long as you aren't pregnant or don't get pregnant. The

only side

> effect is sedation and it would be given at bedtime so could

actually benefit me

> there because I can't sleep well. I aggreed to give it a try so he

went out

> and got a big packet that I had to bring home and study and a

disk for the

> computer to fill out the forms. The thing is you have to get

weekly pregnancy

> tests done for the first 4 weeks and then monthly after that. You

also have to

> prove you are using 2 forms of birth control. Dr. C said

abstinence counted as

> one. It was nearly 2 'o'clock by this time and Denis was waiting

to take us

> back to the airport. We were really in a bind what to do. Dr. C

called Dr.

> one more time from the room and got him on the line.

The conversation

> was very direct, just exactly how he gave it to me. " You saw my

patient

> today and she is here with me now. She has a severe

cardiomyopathy

> due to the weight loss with an EF of 35%. I don't think

anesthesia would be a

> HUGE risk but she needs this surgery done asap. When Dr. C hung

up the phone

> he said Dr. will call you Wed and it will be the first

of next

> week. Everything just went WAY, WAY fast! I have complete and

total trust in Dr.

> as well as my anesthesiologist but I just thought I was

going to

> have more time. I asked Dr. C about repeating my gluthatione

levels since I've

> been taking the NAC for 3 months now. He stared at me blankly for

a few

> moments and then said not to waste my blood. I must have gotten a

funny look on

> my face for then he said " I'm serious. " " You can't afford to

loose one drop

> of your blood. " I remember back when I had the bone marrow biopsy

and I was

> given the same talk then. He said that it was eating my bone

marrow and then

> would go to my heart and then my brain and would not be here

anymore. Dr. C

> told us it was no use to stay just to take our flight home and we

could finish

> the rest over the phone. Now I'm in a holding pattern to find out

when I'm

> going back. It will prob. be this weekend so I can be prepped for

the surgery

> the first of next week.

> We arrived at the airport (still have had nothing to eat since

the little

> muffin at 5:30 a.m.) Quickly called my sis and dad and then it

was time to

> board the plane. We got into Nashville and stopped on the way and

ate fast food

> in the car. It was after my bedtime when we got in, but I was

glad to be home.

>

> We had recieved a belated C-mas gift from my aunt and uncle who

were unable

> to get together with over the holidays due to the snowstorm. My

mom opened it

> right before I went to lay down and it was a Christian CD by

W.

> called Healing Rain. There was also a book by the same title

to go with it.

> It gave me cold chills. If you remember the story I shared a while

back

> about the young boy, Matt Ross, who had cancer and wrote this same

artist and he

> sent a CD and autographed poster for Matt. Unfortunately the very

day it

> arrived he passed away. The title of that CD was " I'll Lead You

Home. " It was just

> like a sign from God as my mom puts it that He is going to send

his healing

> rains for me this year. The song has so much meaning and was just

what we

> needed. I also don't think it was a coincidence that it was

pouring rain

> yesterday in every place we were from Nashville, to Owensboro, to

Cleveland.

> It is my prayer- Lord POUR out your healing rain on me.

>

> Thank you for your prayers as always, love,

>

>

>

>

[Guest guest]

,

sending along paryers adn good thoughts. Keep your chin up.

[Guest guest]

RH-

Thank you very much. I value your support and friendship so much!

[Guest guest]

Laurie-

Thank you for your kind words. Hope your kitchen is soon in working

order again!

[Guest guest]

Barbara-

You were so thoughtful and gentle with your words. I really appreciate

your support and prayers.

Thank you,

[Guest guest]

I just remembered this. My mother had severe cardiomyopathy as did her

mother (at least we think she did). My mother's heart must have been helped

by the CoQ10. Her heart survived several strokes and being removed from all

but body care. Hopefully once your nutrition problems are solved, your heart

will get stronger as well.

Laurie

>

> Reply-To:

> Date: Wed, 05 Jan 2005 04:31:51 -0000

> To:

> Subject: Re: LONG update and religious content

>

>

> Hi ,

>

> You had quite a day and I can imagine how unsettling it was to hear

> Dr. Cohen's distress after seeing your recent echo.

>

> Keep up your faith in the power of those rains and I'll be sending a

> prayer or two along for good measure.

> Maggie

>

>

>>

>> Just take this for what it is...a synopsis of how my day in

> Cleveland went.

>> This is my release and the more I talk about it the easier it is

> for me to

>> accept.

>>

>> Mom and I were up at 4:30 to get ready and get the shuttle over to

> the

>> Nashville airport at 5:45. There was a little breakfast at the

> hotel. I had some

>> of a blueberry muffin and OJ. The flight was turbulent because of

> storms but

>> not too bad or long. We arrived and Denis picked us up and took

> us directly to

>> the clinic. I was at my first appt about 20 mins early. We waited

> some time

>> and then my mom asked if the doc was running on time as I had

> another appt in

>> 40 mins. She checked and said that he was running 30 mins behind

> but that

>> they would go ahead and take me back. It took a little while to

> get everything

>> updated in the computer with meds,etc. Dr. came in a

> little while

>> later and was ever so nice. My GI who referred me back to him had

> never sent

>> any letter or any records like they said they were going to back

> in early Nov.

>> Everything was suppose to be in place and so that the doc would

> be prepared

>> when he saw me. Anyways..he had no idea why I was there so it

> took some time

>> to explain and share with him the records that I had with me from

> home. The

>> most important report he needed I didn't have which is the

> colonic manometry to

>> see how much of the colon is involved to advice for surgery. As

> it stands I

>> have been given two viable options for surgery to improve my

> Intestinal

>> Pseudo Obstruction. The first being a partial colectomy. It would

> be a bikin line

>> cut, similar to a C-section but a smaller incision and then a

> navel cut to

>> disect the colon before removal thru the opening. I would be

> given a catheter

>> epidural that would be put in after I was asleep so that when I

> awake I will

>> be all numb. I would have a catheter so that I wouldn't have to

> get out of bed

>> for a couple of days. In my case I will have to have the catheter

> to remain

>> in quite a few days as I have really bad complications with the

> anesthetics

>> and my bladder. I won't be able to strain to void after having

> major abdominal

>> surgery. There would be no nasal tubes or drainage tubes. It

> would be about

>> a week hospitalization.The other option which my surgeon has

> always done

>> second is something really cutting edge called an apendecostomy.

> It is a more

>> minor procedure that involves a navel cut and a cut at the

> appedix. The appendix

>> is brought to the service and cut level with the skin. It is left

> open and

>> exposed as the appendix is very dry unlike the colon. Each day I

> would have to

>> insert a 10 French catheter into the apendecostomy about 2 inches

> and

>> connect it to some tubing and a bag of hung tap water and flush

> my colon until all

>> I am passing is clear.This is much better than a cecostomy as it

> can't leak

>> and doesn't require a tube to hold the opening open and no

> dressing is requird

>> either. He said your appendix is about the size of a top of a

> pen. This

>> would be a shorter procedure and hospital stay. My surgeon has

> patients that

>> have gone both routes and have been very happy. He has had no

> complications with

>> either. There is a 100% success rate for both surgeries for the

> first year.

>> There is a 20% chance with the partial colectomy that the prob

> could reoccur.

>> Then you would still have the option to get the apendecostomy.

> It's really a

>> hard decision and I keep changing my mind. I was prepared to have

> the colon

>> removed and if that works then I would be cured of the CIP and I

> wouldn't

>> have to take any meds or maintence,etc. It's going to come down

> to what the

>> gastro tells the surgeon about the functioning of my colon. Dr.

> is

>> calling me Wed. to let me know and to make my arrangements. He

> was so nice and

>> very descriptive and drew pictures of everything so I could

> really understand

>> my options. He really gave me hope because either way I go I have

> a backup and

>> a second option if the first one fails. I'm really trying to not

> let anyone

>> influence me but it's hard because everyone does seem to have

> their definite

>> ideas about it.

>> We rushed thru the skyway; mom pushing me in the wheelchair with

> her coat

>> and backpack and purse. Bless her heart! We were late to my mito

> doc's appt and

>> actually passed him leaving the floor to go to lunch when we

> arrived. The

>> nurse got me checked in and put me in a room and paged Dr. C. We

> had not had

>> anytime to stop for lunch and it was nearly 1 o'clock. The nurse

> offered us

>> some apple juice which we gladly accepted. Dr. C came in a little

> later and was

>> very nice and we discussed the surgical consult and my weight and

> what the

>> doc in NY had said,etc. He was going to order labs but I had labs

> from last

>> week that showed my Albumin to be within normal range although in

> the lower

>> norm. He was satisfied with that as it was still normal. The appt

> was wrapping up

>> and I proceeded to tell him that I had had my first abnormal

> echocardiogram.

>> I gave him a copy of the report and he began typing it all into

> the computer

>> but never saying anything. It was quiet for awhile and then just

> suddenly

>> out of the blue he turned to me and said " this is very, very,

> concerning! " " You

>> are in heart failure, and you are going die. " " Your PCP can put

> you on

>> Lanoxin to make your heart contract better, but it will NOT stop

> the progression

>> of this heart failure. It is irreversible. " " If Dr. has

> reccomended

>> surgery then you need to do it NOW. " I was in a state of shock

> and was

>> shaking all over on the verge of tears. I know I take him alot

> different than my

>> mom does but he has a way of almost coming across like a dad when

> you're in

>> trouble or something. I have very close relationships with my

> physicians and I

>> take things to heart. I think it wasn't that he was mad but that

> he was really

>> upset and thru his emotions it came thru to me as being very

> stern.My mom

>> asked him what he would reccomend as the Boost didn't put weight

> on me, the TPN

>> didn't put weight on me and I'm currently eating as much as I

> physically

>> can. He looked at us and very distraughtly said he had no other

> ideas for me. I

>> knew that my EF being 35% was bad, but until a doc. says it to

> your face that

>> you have heart failure and it's going to kill you it's just not

> the same.

>> Reality BITES! I was so shook up! My mom then asked him when he

> would be in

>> town as we would want a co-admission with him so that he could

> take care of my

>> metabolic needs. He said that was a great idea and he would take

> care of it.

>> But when he looked at his schedule he said he would only be in

> town thru the

>> 13th of Jan and then gone here and there much of the next few

> months. He said

>> I was not to wait on him for this surgery. At this point my mom

> is asking if

>> we should even go home at all. He went out into the hall to call

> Dr.

>> and was gone for sometime. When he came back in he said

> that the paging

>> system was down thru-out the clinic and that noone was answering

> the office

>> phone line. He also asked if we had heard of a drug called

> Thalidomide. Those of

>> you who are older than me most likely know all about it. But for

> those who

>> were like me and never heard of it I will share the story that

> Dr. C shared

>> with me. He said it was a drug that came out in the 1950's and

> women who were

>> preg. took it for nausea because it worked so well. It was never

> available in

>> the US but women would go to Europe etc and obtain it. Well it

> caused these

>> horrible birth defects and shortened limbs,etc got a really bad

> reputation.

>> Then in the 1960's a woman in Israel who had leprosy went to a

> doc and he gave

>> her this same med and it cured the rash and took away all her

> pain. Since then

>> it has been studied and used in 2 types of cancer and now for

> AIDS patients

>> who are losing weight. Something about it helps to halt the weight

> loss

>> process. Dr. C has been studying it and using it for 10 years. He

> said it is very

>> safe as long as you aren't pregnant or don't get pregnant. The

> only side

>> effect is sedation and it would be given at bedtime so could

> actually benefit me

>> there because I can't sleep well. I aggreed to give it a try so he

> went out

>> and got a big packet that I had to bring home and study and a

> disk for the

>> computer to fill out the forms. The thing is you have to get

> weekly pregnancy

>> tests done for the first 4 weeks and then monthly after that. You

> also have to

>> prove you are using 2 forms of birth control. Dr. C said

> abstinence counted as

>> one. It was nearly 2 'o'clock by this time and Denis was waiting

> to take us

>> back to the airport. We were really in a bind what to do. Dr. C

> called Dr.

>> one more time from the room and got him on the line.

> The conversation

>> was very direct, just exactly how he gave it to me. " You saw my

> patient

>> today and she is here with me now. She has a severe

> cardiomyopathy

>> due to the weight loss with an EF of 35%. I don't think

> anesthesia would be a

>> HUGE risk but she needs this surgery done asap. When Dr. C hung

> up the phone

>> he said Dr. will call you Wed and it will be the first

> of next

>> week. Everything just went WAY, WAY fast! I have complete and

> total trust in Dr.

>> as well as my anesthesiologist but I just thought I was

> going to

>> have more time. I asked Dr. C about repeating my gluthatione

> levels since I've

>> been taking the NAC for 3 months now. He stared at me blankly for

> a few

>> moments and then said not to waste my blood. I must have gotten a

> funny look on

>> my face for then he said " I'm serious. " " You can't afford to

> loose one drop

>> of your blood. " I remember back when I had the bone marrow biopsy

> and I was

>> given the same talk then. He said that it was eating my bone

> marrow and then

>> would go to my heart and then my brain and would not be here

> anymore. Dr. C

>> told us it was no use to stay just to take our flight home and we

> could finish

>> the rest over the phone. Now I'm in a holding pattern to find out

> when I'm

>> going back. It will prob. be this weekend so I can be prepped for

> the surgery

>> the first of next week.

>> We arrived at the airport (still have had nothing to eat since

> the little

>> muffin at 5:30 a.m.) Quickly called my sis and dad and then it

> was time to

>> board the plane. We got into Nashville and stopped on the way and

> ate fast food

>> in the car. It was after my bedtime when we got in, but I was

> glad to be home.

>>

>> We had recieved a belated C-mas gift from my aunt and uncle who

> were unable

>> to get together with over the holidays due to the snowstorm. My

> mom opened it

>> right before I went to lay down and it was a Christian CD by

> W.

>> called Healing Rain. There was also a book by the same title

> to go with it.

>> It gave me cold chills. If you remember the story I shared a while

> back

>> about the young boy, Matt Ross, who had cancer and wrote this same

> artist and he

>> sent a CD and autographed poster for Matt. Unfortunately the very

> day it

>> arrived he passed away. The title of that CD was " I'll Lead You

> Home. " It was just

>> like a sign from God as my mom puts it that He is going to send

> his healing

>> rains for me this year. The song has so much meaning and was just

> what we

>> needed. I also don't think it was a coincidence that it was

> pouring rain

>> yesterday in every place we were from Nashville, to Owensboro, to

> Cleveland.

>> It is my prayer- Lord POUR out your healing rain on me.

>>

>> Thank you for your prayers as always, love,

>>

>>

>>

>>

[Guest guest]

I just remembered this. My mother had severe cardiomyopathy as did her

mother (at least we think she did). My mother's heart must have been helped

by the CoQ10. Her heart survived several strokes and being removed from all

but body care. Hopefully once your nutrition problems are solved, your heart

will get stronger as well.

Laurie

>

> Reply-To:

> Date: Wed, 05 Jan 2005 04:31:51 -0000

> To:

> Subject: Re: LONG update and religious content

>

>

> Hi ,

>

> You had quite a day and I can imagine how unsettling it was to hear

> Dr. Cohen's distress after seeing your recent echo.

>

> Keep up your faith in the power of those rains and I'll be sending a

> prayer or two along for good measure.

> Maggie

>

>

>>

>> Just take this for what it is...a synopsis of how my day in

> Cleveland went.

>> This is my release and the more I talk about it the easier it is

> for me to

>> accept.

>>

>> Mom and I were up at 4:30 to get ready and get the shuttle over to

> the

>> Nashville airport at 5:45. There was a little breakfast at the

> hotel. I had some

>> of a blueberry muffin and OJ. The flight was turbulent because of

> storms but

>> not too bad or long. We arrived and Denis picked us up and took

> us directly to

>> the clinic. I was at my first appt about 20 mins early. We waited

> some time

>> and then my mom asked if the doc was running on time as I had

> another appt in

>> 40 mins. She checked and said that he was running 30 mins behind

> but that

>> they would go ahead and take me back. It took a little while to

> get everything

>> updated in the computer with meds,etc. Dr. came in a

> little while

>> later and was ever so nice. My GI who referred me back to him had

> never sent

>> any letter or any records like they said they were going to back

> in early Nov.

>> Everything was suppose to be in place and so that the doc would

> be prepared

>> when he saw me. Anyways..he had no idea why I was there so it

> took some time

>> to explain and share with him the records that I had with me from

> home. The

>> most important report he needed I didn't have which is the

> colonic manometry to

>> see how much of the colon is involved to advice for surgery. As

> it stands I

>> have been given two viable options for surgery to improve my

> Intestinal

>> Pseudo Obstruction. The first being a partial colectomy. It would

> be a bikin line

>> cut, similar to a C-section but a smaller incision and then a

> navel cut to

>> disect the colon before removal thru the opening. I would be

> given a catheter

>> epidural that would be put in after I was asleep so that when I

> awake I will

>> be all numb. I would have a catheter so that I wouldn't have to

> get out of bed

>> for a couple of days. In my case I will have to have the catheter

> to remain

>> in quite a few days as I have really bad complications with the

> anesthetics

>> and my bladder. I won't be able to strain to void after having

> major abdominal

>> surgery. There would be no nasal tubes or drainage tubes. It

> would be about

>> a week hospitalization.The other option which my surgeon has

> always done

>> second is something really cutting edge called an apendecostomy.

> It is a more

>> minor procedure that involves a navel cut and a cut at the

> appedix. The appendix

>> is brought to the service and cut level with the skin. It is left

> open and

>> exposed as the appendix is very dry unlike the colon. Each day I

> would have to

>> insert a 10 French catheter into the apendecostomy about 2 inches

> and

>> connect it to some tubing and a bag of hung tap water and flush

> my colon until all

>> I am passing is clear.This is much better than a cecostomy as it

> can't leak

>> and doesn't require a tube to hold the opening open and no

> dressing is requird

>> either. He said your appendix is about the size of a top of a

> pen. This

>> would be a shorter procedure and hospital stay. My surgeon has

> patients that

>> have gone both routes and have been very happy. He has had no

> complications with

>> either. There is a 100% success rate for both surgeries for the

> first year.

>> There is a 20% chance with the partial colectomy that the prob

> could reoccur.

>> Then you would still have the option to get the apendecostomy.

> It's really a

>> hard decision and I keep changing my mind. I was prepared to have

> the colon

>> removed and if that works then I would be cured of the CIP and I

> wouldn't

>> have to take any meds or maintence,etc. It's going to come down

> to what the

>> gastro tells the surgeon about the functioning of my colon. Dr.

> is

>> calling me Wed. to let me know and to make my arrangements. He

> was so nice and

>> very descriptive and drew pictures of everything so I could

> really understand

>> my options. He really gave me hope because either way I go I have

> a backup and

>> a second option if the first one fails. I'm really trying to not

> let anyone

>> influence me but it's hard because everyone does seem to have

> their definite

>> ideas about it.

>> We rushed thru the skyway; mom pushing me in the wheelchair with

> her coat

>> and backpack and purse. Bless her heart! We were late to my mito

> doc's appt and

>> actually passed him leaving the floor to go to lunch when we

> arrived. The

>> nurse got me checked in and put me in a room and paged Dr. C. We

> had not had

>> anytime to stop for lunch and it was nearly 1 o'clock. The nurse

> offered us

>> some apple juice which we gladly accepted. Dr. C came in a little

> later and was

>> very nice and we discussed the surgical consult and my weight and

> what the

>> doc in NY had said,etc. He was going to order labs but I had labs

> from last

>> week that showed my Albumin to be within normal range although in

> the lower

>> norm. He was satisfied with that as it was still normal. The appt

> was wrapping up

>> and I proceeded to tell him that I had had my first abnormal

> echocardiogram.

>> I gave him a copy of the report and he began typing it all into

> the computer

>> but never saying anything. It was quiet for awhile and then just

> suddenly

>> out of the blue he turned to me and said " this is very, very,

> concerning! " " You

>> are in heart failure, and you are going die. " " Your PCP can put

> you on

>> Lanoxin to make your heart contract better, but it will NOT stop

> the progression

>> of this heart failure. It is irreversible. " " If Dr. has

> reccomended

>> surgery then you need to do it NOW. " I was in a state of shock

> and was

>> shaking all over on the verge of tears. I know I take him alot

> different than my

>> mom does but he has a way of almost coming across like a dad when

> you're in

>> trouble or something. I have very close relationships with my

> physicians and I

>> take things to heart. I think it wasn't that he was mad but that

> he was really

>> upset and thru his emotions it came thru to me as being very

> stern.My mom

>> asked him what he would reccomend as the Boost didn't put weight

> on me, the TPN

>> didn't put weight on me and I'm currently eating as much as I

> physically

>> can. He looked at us and very distraughtly said he had no other

> ideas for me. I

>> knew that my EF being 35% was bad, but until a doc. says it to

> your face that

>> you have heart failure and it's going to kill you it's just not

> the same.

>> Reality BITES! I was so shook up! My mom then asked him when he

> would be in

>> town as we would want a co-admission with him so that he could

> take care of my

>> metabolic needs. He said that was a great idea and he would take

> care of it.

>> But when he looked at his schedule he said he would only be in

> town thru the

>> 13th of Jan and then gone here and there much of the next few

> months. He said

>> I was not to wait on him for this surgery. At this point my mom

> is asking if

>> we should even go home at all. He went out into the hall to call

> Dr.

>> and was gone for sometime. When he came back in he said

> that the paging

>> system was down thru-out the clinic and that noone was answering

> the office

>> phone line. He also asked if we had heard of a drug called

> Thalidomide. Those of

>> you who are older than me most likely know all about it. But for

> those who

>> were like me and never heard of it I will share the story that

> Dr. C shared

>> with me. He said it was a drug that came out in the 1950's and

> women who were

>> preg. took it for nausea because it worked so well. It was never

> available in

>> the US but women would go to Europe etc and obtain it. Well it

> caused these

>> horrible birth defects and shortened limbs,etc got a really bad

> reputation.

>> Then in the 1960's a woman in Israel who had leprosy went to a

> doc and he gave

>> her this same med and it cured the rash and took away all her

> pain. Since then

>> it has been studied and used in 2 types of cancer and now for

> AIDS patients

>> who are losing weight. Something about it helps to halt the weight

> loss

>> process. Dr. C has been studying it and using it for 10 years. He

> said it is very

>> safe as long as you aren't pregnant or don't get pregnant. The

> only side

>> effect is sedation and it would be given at bedtime so could

> actually benefit me

>> there because I can't sleep well. I aggreed to give it a try so he

> went out

>> and got a big packet that I had to bring home and study and a

> disk for the

>> computer to fill out the forms. The thing is you have to get

> weekly pregnancy

>> tests done for the first 4 weeks and then monthly after that. You

> also have to

>> prove you are using 2 forms of birth control. Dr. C said

> abstinence counted as

>> one. It was nearly 2 'o'clock by this time and Denis was waiting

> to take us

>> back to the airport. We were really in a bind what to do. Dr. C

> called Dr.

>> one more time from the room and got him on the line.

> The conversation

>> was very direct, just exactly how he gave it to me. " You saw my

> patient

>> today and she is here with me now. She has a severe

> cardiomyopathy

>> due to the weight loss with an EF of 35%. I don't think

> anesthesia would be a

>> HUGE risk but she needs this surgery done asap. When Dr. C hung

> up the phone

>> he said Dr. will call you Wed and it will be the first

> of next

>> week. Everything just went WAY, WAY fast! I have complete and

> total trust in Dr.

>> as well as my anesthesiologist but I just thought I was

> going to

>> have more time. I asked Dr. C about repeating my gluthatione

> levels since I've

>> been taking the NAC for 3 months now. He stared at me blankly for

> a few

>> moments and then said not to waste my blood. I must have gotten a

> funny look on

>> my face for then he said " I'm serious. " " You can't afford to

> loose one drop

>> of your blood. " I remember back when I had the bone marrow biopsy

> and I was

>> given the same talk then. He said that it was eating my bone

> marrow and then

>> would go to my heart and then my brain and would not be here

> anymore. Dr. C

>> told us it was no use to stay just to take our flight home and we

> could finish

>> the rest over the phone. Now I'm in a holding pattern to find out

> when I'm

>> going back. It will prob. be this weekend so I can be prepped for

> the surgery

>> the first of next week.

>> We arrived at the airport (still have had nothing to eat since

> the little

>> muffin at 5:30 a.m.) Quickly called my sis and dad and then it

> was time to

>> board the plane. We got into Nashville and stopped on the way and

> ate fast food

>> in the car. It was after my bedtime when we got in, but I was

> glad to be home.

>>

>> We had recieved a belated C-mas gift from my aunt and uncle who

> were unable

>> to get together with over the holidays due to the snowstorm. My

> mom opened it

>> right before I went to lay down and it was a Christian CD by

> W.

>> called Healing Rain. There was also a book by the same title

> to go with it.

>> It gave me cold chills. If you remember the story I shared a while

> back

>> about the young boy, Matt Ross, who had cancer and wrote this same

> artist and he

>> sent a CD and autographed poster for Matt. Unfortunately the very

> day it

>> arrived he passed away. The title of that CD was " I'll Lead You

> Home. " It was just

>> like a sign from God as my mom puts it that He is going to send

> his healing

>> rains for me this year. The song has so much meaning and was just

> what we

>> needed. I also don't think it was a coincidence that it was

> pouring rain

>> yesterday in every place we were from Nashville, to Owensboro, to

> Cleveland.

>> It is my prayer- Lord POUR out your healing rain on me.

>>

>> Thank you for your prayers as always, love,

>>

>>

>>

>>

[Guest guest]

,

Did you ask Dr. C about upping your CoQ10? I think I mentioned this

before your appointment at some time. And if you can take the Q-Gel,

that may help more than the others if your body can handle it. Sorry if

I am repeating myself. I suspect Dr. C was angry that your local docs

hadn't told you of the severity of your heart issues. I'm sure he

didn't mean to freak you out, as that just isn't like him in my

experience anyway.

Please know that you will continue to be in my prayers.

Gentle Hugs,

Laureta Fitzgerald wrote:

>

>

>I just remembered this. My mother had severe cardiomyopathy as did her

>mother (at least we think she did). My mother's heart must have been helped

>by the CoQ10. Her heart survived several strokes and being removed from all

>but body care. Hopefully once your nutrition problems are solved, your heart

>will get stronger as well.

>

>Laurie

>

>

>

>>

>>Reply-To:

>>Date: Wed, 05 Jan 2005 04:31:51 -0000

>>To:

>>Subject: Re: LONG update and religious content

>>

>>

>>Hi ,

>>

>>You had quite a day and I can imagine how unsettling it was to hear

>>Dr. Cohen's distress after seeing your recent echo.

>>

>>Keep up your faith in the power of those rains and I'll be sending a

>>prayer or two along for good measure.

>>Maggie

>>

>>

>>

>>

>>>Just take this for what it is...a synopsis of how my day in

>>>

>>>

>>Cleveland went.

>>

>>

>>>This is my release and the more I talk about it the easier it is

>>>

>>>

>>for me to

>>

>>

>>>accept.

>>>

>>>Mom and I were up at 4:30 to get ready and get the shuttle over to

>>>

>>>

>>the

>>

>>

>>>Nashville airport at 5:45. There was a little breakfast at the

>>>

>>>

>>hotel. I had some

>>

>>

>>>of a blueberry muffin and OJ. The flight was turbulent because of

>>>

>>>

>>storms but

>>

>>

>>>not too bad or long. We arrived and Denis picked us up and took

>>>

>>>

>>us directly to

>>

>>

>>>the clinic. I was at my first appt about 20 mins early. We waited

>>>

>>>

>>some time

>>

>>

>>>and then my mom asked if the doc was running on time as I had

>>>

>>>

>>another appt in

>>

>>

>>>40 mins. She checked and said that he was running 30 mins behind

>>>

>>>

>>but that

>>

>>

>>>they would go ahead and take me back. It took a little while to

>>>

>>>

>>get everything

>>

>>

>>>updated in the computer with meds,etc. Dr. came in a

>>>

>>>

>>little while

>>

>>

>>>later and was ever so nice. My GI who referred me back to him had

>>>

>>>

>>never sent

>>

>>

>>>any letter or any records like they said they were going to back

>>>

>>>

>>in early Nov.

>>

>>

>>>Everything was suppose to be in place and so that the doc would

>>>

>>>

>>be prepared

>>

>>

>>>when he saw me. Anyways..he had no idea why I was there so it

>>>

>>>

>>took some time

>>

>>

>>>to explain and share with him the records that I had with me from

>>>

>>>

>>home. The

>>

>>

>>>most important report he needed I didn't have which is the

>>>

>>>

>>colonic manometry to

>>

>>

>>>see how much of the colon is involved to advice for surgery. As

>>>

>>>

>>it stands I

>>

>>

>>>have been given two viable options for surgery to improve my

>>>

>>>

>>Intestinal

>>

>>

>>>Pseudo Obstruction. The first being a partial colectomy. It would

>>>

>>>

>>be a bikin line

>>

>>

>>>cut, similar to a C-section but a smaller incision and then a

>>>

>>>

>>navel cut to

>>

>>

>>>disect the colon before removal thru the opening. I would be

>>>

>>>

>>given a catheter

>>

>>

>>>epidural that would be put in after I was asleep so that when I

>>>

>>>

>>awake I will

>>

>>

>>>be all numb. I would have a catheter so that I wouldn't have to

>>>

>>>

>>get out of bed

>>

>>

>>>for a couple of days. In my case I will have to have the catheter

>>>

>>>

>>to remain

>>

>>

>>>in quite a few days as I have really bad complications with the

>>>

>>>

>>anesthetics

>>

>>

>>>and my bladder. I won't be able to strain to void after having

>>>

>>>

>>major abdominal

>>

>>

>>>surgery. There would be no nasal tubes or drainage tubes. It

>>>

>>>

>>would be about

>>

>>

>>>a week hospitalization.The other option which my surgeon has

>>>

>>>

>>always done

>>

>>

>>>second is something really cutting edge called an apendecostomy.

>>>

>>>

>>It is a more

>>

>>

>>>minor procedure that involves a navel cut and a cut at the

>>>

>>>

>>appedix. The appendix

>>

>>

>>>is brought to the service and cut level with the skin. It is left

>>>

>>>

>>open and

>>

>>

>>>exposed as the appendix is very dry unlike the colon. Each day I

>>>

>>>

>>would have to

>>

>>

>>>insert a 10 French catheter into the apendecostomy about 2 inches

>>>

>>>

>>and

>>

>>

>>>connect it to some tubing and a bag of hung tap water and flush

>>>

>>>

>>my colon until all

>>

>>

>>>I am passing is clear.This is much better than a cecostomy as it

>>>

>>>

>>can't leak

>>

>>

>>>and doesn't require a tube to hold the opening open and no

>>>

>>>

>>dressing is requird

>>

>>

>>>either. He said your appendix is about the size of a top of a

>>>

>>>

>>pen. This

>>

>>

>>>would be a shorter procedure and hospital stay. My surgeon has

>>>

>>>

>>patients that

>>

>>

>>>have gone both routes and have been very happy. He has had no

>>>

>>>

>>complications with

>>

>>

>>>either. There is a 100% success rate for both surgeries for the

>>>

>>>

>>first year.

>>

>>

>>>There is a 20% chance with the partial colectomy that the prob

>>>

>>>

>>could reoccur.

>>

>>

>>>Then you would still have the option to get the apendecostomy.

>>>

>>>

>>It's really a

>>

>>

>>>hard decision and I keep changing my mind. I was prepared to have

>>>

>>>

>>the colon

>>

>>

>>>removed and if that works then I would be cured of the CIP and I

>>>

>>>

>>wouldn't

>>

>>

>>>have to take any meds or maintence,etc. It's going to come down

>>>

>>>

>>to what the

>>

>>

>>>gastro tells the surgeon about the functioning of my colon. Dr.

>>>

>>>

>> is

>>

>>

>>>calling me Wed. to let me know and to make my arrangements. He

>>>

>>>

>>was so nice and

>>

>>

>>>very descriptive and drew pictures of everything so I could

>>>

>>>

>>really understand

>>

>>

>>>my options. He really gave me hope because either way I go I have

>>>

>>>

>>a backup and

>>

>>

>>>a second option if the first one fails. I'm really trying to not

>>>

>>>

>>let anyone

>>

>>

>>>influence me but it's hard because everyone does seem to have

>>>

>>>

>>their definite

>>

>>

>>>ideas about it.

>>>We rushed thru the skyway; mom pushing me in the wheelchair with

>>>

>>>

>>her coat

>>

>>

>>>and backpack and purse. Bless her heart! We were late to my mito

>>>

>>>

>>doc's appt and

>>

>>

>>>actually passed him leaving the floor to go to lunch when we

>>>

>>>

>>arrived. The

>>

>>

>>>nurse got me checked in and put me in a room and paged Dr. C. We

>>>

>>>

>>had not had

>>

>>

>>>anytime to stop for lunch and it was nearly 1 o'clock. The nurse

>>>

>>>

>>offered us

>>

>>

>>>some apple juice which we gladly accepted. Dr. C came in a little

>>>

>>>

>>later and was

>>

>>

>>>very nice and we discussed the surgical consult and my weight and

>>>

>>>

>>what the

>>

>>

>>>doc in NY had said,etc. He was going to order labs but I had labs

>>>

>>>

>>from last

>>

>>

>>>week that showed my Albumin to be within normal range although in

>>>

>>>

>>the lower

>>

>>

>>>norm. He was satisfied with that as it was still normal. The appt

>>>

>>>

>>was wrapping up

>>

>>

>>>and I proceeded to tell him that I had had my first abnormal

>>>

>>>

>>echocardiogram.

>>

>>

>>>I gave him a copy of the report and he began typing it all into

>>>

>>>

>>the computer

>>

>>

>>>but never saying anything. It was quiet for awhile and then just

>>>

>>>

>>suddenly

>>

>>

>>>out of the blue he turned to me and said " this is very, very,

>>>

>>>

>>concerning! " " You

>>

>>

>>>are in heart failure, and you are going die. " " Your PCP can put

>>>

>>>

>>you on

>>

>>

>>>Lanoxin to make your heart contract better, but it will NOT stop

>>>

>>>

>>the progression

>>

>>

>>>of this heart failure. It is irreversible. " " If Dr. has

>>>

>>>

>>reccomended

>>

>>

>>>surgery then you need to do it NOW. " I was in a state of shock

>>>

>>>

>>and was

>>

>>

>>>shaking all over on the verge of tears. I know I take him alot

>>>

>>>

>>different than my

>>

>>

>>>mom does but he has a way of almost coming across like a dad when

>>>

>>>

>>you're in

>>

>>

>>>trouble or something. I have very close relationships with my

>>>

>>>

>>physicians and I

>>

>>

>>>take things to heart. I think it wasn't that he was mad but that

>>>

>>>

>>he was really

>>

>>

>>>upset and thru his emotions it came thru to me as being very

>>>

>>>

>>stern.My mom

>>

>>

>>>asked him what he would reccomend as the Boost didn't put weight

>>>

>>>

>>on me, the TPN

>>

>>

>>>didn't put weight on me and I'm currently eating as much as I

>>>

>>>

>>physically

>>

>>

>>>can. He looked at us and very distraughtly said he had no other

>>>

>>>

>>ideas for me. I

>>

>>

>>>knew that my EF being 35% was bad, but until a doc. says it to

>>>

>>>

>>your face that

>>

>>

>>>you have heart failure and it's going to kill you it's just not

>>>

>>>

>>the same.

>>

>>

>>>Reality BITES! I was so shook up! My mom then asked him when he

>>>

>>>

>>would be in

>>

>>

>>>town as we would want a co-admission with him so that he could

>>>

>>>

>>take care of my

>>

>>

>>>metabolic needs. He said that was a great idea and he would take

>>>

>>>

>>care of it.

>>

>>

>>>But when he looked at his schedule he said he would only be in

>>>

>>>

>>town thru the

>>

>>

>>>13th of Jan and then gone here and there much of the next few

>>>

>>>

>>months. He said

>>

>>

>>>I was not to wait on him for this surgery. At this point my mom

>>>

>>>

>>is asking if

>>

>>

>>>we should even go home at all. He went out into the hall to call

>>>

>>>

>>Dr.

>>

>>

>>> and was gone for sometime. When he came back in he said

>>>

>>>

>>that the paging

>>

>>

>>>system was down thru-out the clinic and that noone was answering

>>>

>>>

>>the office

>>

>>

>>>phone line. He also asked if we had heard of a drug called

>>>

>>>

>>Thalidomide. Those of

>>

>>

>>>you who are older than me most likely know all about it. But for

>>>

>>>

>>those who

>>

>>

>>>were like me and never heard of it I will share the story that

>>>

>>>

>>Dr. C shared

>>

>>

>>>with me. He said it was a drug that came out in the 1950's and

>>>

>>>

>>women who were

>>

>>

>>>preg. took it for nausea because it worked so well. It was never

>>>

>>>

>>available in

>>

>>

>>>the US but women would go to Europe etc and obtain it. Well it

>>>

>>>

>>caused these

>>

>>

>>>horrible birth defects and shortened limbs,etc got a really bad

>>>

>>>

>>reputation.

>>

>>

>>>Then in the 1960's a woman in Israel who had leprosy went to a

>>>

>>>

>>doc and he gave

>>

>>

>>>her this same med and it cured the rash and took away all her

>>>

>>>

>>pain. Since then

>>

>>

>>>it has been studied and used in 2 types of cancer and now for

>>>

>>>

>>AIDS patients

>>

>>

>>>who are losing weight. Something about it helps to halt the weight

>>>

>>>

>>loss

>>

>>

>>>process. Dr. C has been studying it and using it for 10 years. He

>>>

>>>

>>said it is very

>>

>>

>>>safe as long as you aren't pregnant or don't get pregnant. The

>>>

>>>

>>only side

>>

>>

>>>effect is sedation and it would be given at bedtime so could

>>>

>>>

>>actually benefit me

>>

>>

>>>there because I can't sleep well. I aggreed to give it a try so he

>>>

>>>

>>went out

>>

>>

>>>and got a big packet that I had to bring home and study and a

>>>

>>>

>>disk for the

>>

>>

>>>computer to fill out the forms. The thing is you have to get

>>>

>>>

>>weekly pregnancy

>>

>>

>>>tests done for the first 4 weeks and then monthly after that. You

>>>

>>>

>>also have to

>>

>>

>>>prove you are using 2 forms of birth control. Dr. C said

>>>

>>>

>>abstinence counted as

>>

>>

>>>one. It was nearly 2 'o'clock by this time and Denis was waiting

>>>

>>>

>>to take us

>>

>>

>>>back to the airport. We were really in a bind what to do. Dr. C

>>>

>>>

>>called Dr.

>>

>>

>>> one more time from the room and got him on the line.

>>>

>>>

>>The conversation

>>

>>

>>>was very direct, just exactly how he gave it to me. " You saw my

>>>

>>>

>>patient

>>

>>

>>> today and she is here with me now. She has a severe

>>>

>>>

>>cardiomyopathy

>>

>>

>>>due to the weight loss with an EF of 35%. I don't think

>>>

>>>

>>anesthesia would be a

>>

>>

>>>HUGE risk but she needs this surgery done asap. When Dr. C hung

>>>

>>>

>>up the phone

>>

>>

>>>he said Dr. will call you Wed and it will be the first

>>>

>>>

>>of next

>>

>>

>>>week. Everything just went WAY, WAY fast! I have complete and

>>>

>>>

>>total trust in Dr.

>>

>>

>>> as well as my anesthesiologist but I just thought I was

>>>

>>>

>>going to

>>

>>

>>>have more time. I asked Dr. C about repeating my gluthatione

>>>

>>>

>>levels since I've

>>

>>

>>>been taking the NAC for 3 months now. He stared at me blankly for

>>>

>>>

>>a few

>>

>>

>>>moments and then said not to waste my blood. I must have gotten a

>>>

>>>

>>funny look on

>>

>>

>>>my face for then he said " I'm serious. " " You can't afford to

>>>

>>>

>>loose one drop

>>

>>

>>>of your blood. " I remember back when I had the bone marrow biopsy

>>>

>>>

>>and I was

>>

>>

>>>given the same talk then. He said that it was eating my bone

>>>

>>>

>>marrow and then

>>

>>

>>>would go to my heart and then my brain and would not be here

>>>

>>>

>>anymore. Dr. C

>>

>>

>>>told us it was no use to stay just to take our flight home and we

>>>

>>>

>>could finish

>>

>>

>>>the rest over the phone. Now I'm in a holding pattern to find out

>>>

>>>

>>when I'm

>>

>>

>>>going back. It will prob. be this weekend so I can be prepped for

>>>

>>>

>>the surgery

>>

>>

>>>the first of next week.

>>>We arrived at the airport (still have had nothing to eat since

>>>

>>>

>>the little

>>

>>

>>>muffin at 5:30 a.m.) Quickly called my sis and dad and then it

>>>

>>>

>>was time to

>>

>>

>>>board the plane. We got into Nashville and stopped on the way and

>>>

>>>

>>ate fast food

>>

>>

>>>in the car. It was after my bedtime when we got in, but I was

>>>

>>>

>>glad to be home.

>>

>>

>>>We had recieved a belated C-mas gift from my aunt and uncle who

>>>

>>>

>>were unable

>>

>>

>>>to get together with over the holidays due to the snowstorm. My

>>>

>>>

>>mom opened it

>>

>>

>>>right before I went to lay down and it was a Christian CD by

>>>

>>>

>> W.

>>

>>

>>> called Healing Rain. There was also a book by the same title

>>>

>>>

>>to go with it.

>>

>>

>>>It gave me cold chills. If you remember the story I shared a while

>>>

>>>

>>back

>>

>>

>>>about the young boy, Matt Ross, who had cancer and wrote this same

>>>

>>>

>>artist and he

>>

>>

>>>sent a CD and autographed poster for Matt. Unfortunately the very

>>>

>>>

>>day it

>>

>>

>>>arrived he passed away. The title of that CD was " I'll Lead You

>>>

>>>

>>Home. " It was just

>>

>>

>>>like a sign from God as my mom puts it that He is going to send

>>>

>>>

>>his healing

>>

>>

>>>rains for me this year. The song has so much meaning and was just

>>>

>>>

>>what we

>>

>>

>>>needed. I also don't think it was a coincidence that it was

>>>

>>>

>>pouring rain

>>

>>

>>>yesterday in every place we were from Nashville, to Owensboro, to

>>>

>>>

>>Cleveland.

>>

>>

>>>It is my prayer- Lord POUR out your healing rain on me.

>>>

>>>Thank you for your prayers as always, love,

>>>

>>>

>>>

>>>

[Guest guest]

Laurie,

I was just thinking along this same line. My mom has had heart

failure (cardiomyopathy) for years as did my grandmother. Up till

recently my mom's EF was 25. I'm not sure how she did it (she did

have a pacemaker put in 2 years ago but that didn't seem to change

her EF until recently). At 75 years old, her EF is now at 55.

Maggie

>

>

> I just remembered this. My mother had severe cardiomyopathy as did

her

> mother (at least we think she did). My mother's heart must have

been helped

> by the CoQ10. Her heart survived several strokes and being removed

from all

> but body care. Hopefully once your nutrition problems are solved,

your heart

> will get stronger as well.

>

> Laurie

[Guest guest]

Laurie,

I was just thinking along this same line. My mom has had heart

failure (cardiomyopathy) for years as did my grandmother. Up till

recently my mom's EF was 25. I'm not sure how she did it (she did

have a pacemaker put in 2 years ago but that didn't seem to change

her EF until recently). At 75 years old, her EF is now at 55.

Maggie

>

>

> I just remembered this. My mother had severe cardiomyopathy as did

her

> mother (at least we think she did). My mother's heart must have

been helped

> by the CoQ10. Her heart survived several strokes and being removed

from all

> but body care. Hopefully once your nutrition problems are solved,

your heart

> will get stronger as well.

>

> Laurie

[Guest guest]

Laurie,

Could you or someone please explain what cardiomyopathy is I know it is heart

failure I guess I would like to know what are some of the symptoms are as my

mothers , mother passed away in 1979 at the age of 67 due to I believe somekind

of a heart block. Both of my kids and myself went through the Boles study and

came back at greater than 95% with mito and have MIDS well I will be tested soon

and my mom has been tested and we are waiting for the results. I worry about my

mom as she does have some heart problems. Also for anyone who has gotten SSI/ OR

SSDI can you please help me I know it is different from state to state but the

woman who is handling my son case says she just does not know enough if the

doctors could just write a little something and I don't think they will. He has

an attorney but it is at the point where if she denies him again than he will

have to have a hearing. I am worried that the stress of a hearing will put him

into a vomiting episode and he will be admited to the hospital thanks for your

help sorry for all the questions.

Sincerely,

Donna K

---- whoewe2002 whoewe2002@...> wrote:

>

>

> Laurie,

> I was just thinking along this same line. My mom has had heart

> failure (cardiomyopathy) for years as did my grandmother. Up till

> recently my mom's EF was 25. I'm not sure how she did it (she did

> have a pacemaker put in 2 years ago but that didn't seem to change

> her EF until recently). At 75 years old, her EF is now at 55.

> Maggie

>

>

>

> >

> >

> > I just remembered this. My mother had severe cardiomyopathy as did

> her

> > mother (at least we think she did). My mother's heart must have

> been helped

> > by the CoQ10. Her heart survived several strokes and being removed

> from all

> > but body care. Hopefully once your nutrition problems are solved,

> your heart

> > will get stronger as well.

> >

> > Laurie

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Donna

Cardiomyopathy is the heart muscle being weak. With this, often the heart is

enlarged, but not always.

SSI/SSDI are federal programs, so it is much the same from state to state.

Since these programs are not actually social security, but a program

administered by SS, different offices seem to be more helpful than others.

My son applied for SSDI when 19 and we provided them with the booklet

available from UMDF and several internet articles. He ended up not getting

it, but we weren't surprised They seem to be more impressed with the

different things that mito can cause, such as seizures or heart problems,

etc. They can identify and understand them better than the mito which they

have never heard about.

laurie

>

> Reply-To:

> Date: Thu, 6 Jan 2005 8:38:24 -0500

> To:

> Subject: Re: Re: LONG update and religious content

>

> Laurie,

> Could you or someone please explain what cardiomyopathy is I know it is heart

> failure I guess I would like to know what are some of the symptoms are as my

> mothers , mother passed away in 1979 at the age of 67 due to I believe

> somekind of a heart block. Both of my kids and myself went through the Boles

> study and came back at greater than 95% with mito and have MIDS well I will be

> tested soon and my mom has been tested and we are waiting for the results. I

> worry about my mom as she does have some heart problems. Also for anyone who

> has gotten SSI/ OR SSDI can you please help me I know it is different from

> state to state but the woman who is handling my son case says she just does

> not know enough if the doctors could just write a little something and I don't

> think they will. He has an attorney but it is at the point where if she denies

> him again than he will have to have a hearing. I am worried that the stress of

> a hearing will put him into a vomiting episode and he will be admited to the

> hospital thanks for your help sorry for all the questions.

> Sincerely,

> Donna K

> ---- whoewe2002 whoewe2002@...> wrote:

>>

>>

>> Laurie,

>> I was just thinking along this same line. My mom has had heart

>> failure (cardiomyopathy) for years as did my grandmother. Up till

>> recently my mom's EF was 25. I'm not sure how she did it (she did

>> have a pacemaker put in 2 years ago but that didn't seem to change

>> her EF until recently). At 75 years old, her EF is now at 55.

>> Maggie

>>

>>

>>

>>>

>>>

>>> I just remembered this. My mother had severe cardiomyopathy as did

>> her

>>> mother (at least we think she did). My mother's heart must have

>> been helped

>>> by the CoQ10. Her heart survived several strokes and being removed

>> from all

>>> but body care. Hopefully once your nutrition problems are solved,

>> your heart

>>> will get stronger as well.

>>>

>>> Laurie

>>

>>

>>

>>

>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained herein

>> are not necessarily those of the list moderators. The author of this e mail

>> is entirely responsible for its content. List members are reminded of their

>> responsibility to evaluate the content of the postings and consult with their

>> physicians regarding changes in their own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends one is

>> automatically moderated or removed depending on the severity of the attack.

>>

>>

[Guest guest]

Donna

Cardiomyopathy is the heart muscle being weak. With this, often the heart is

enlarged, but not always.

SSI/SSDI are federal programs, so it is much the same from state to state.

Since these programs are not actually social security, but a program

administered by SS, different offices seem to be more helpful than others.

My son applied for SSDI when 19 and we provided them with the booklet

available from UMDF and several internet articles. He ended up not getting

it, but we weren't surprised They seem to be more impressed with the

different things that mito can cause, such as seizures or heart problems,

etc. They can identify and understand them better than the mito which they

have never heard about.

laurie

>

> Reply-To:

> Date: Thu, 6 Jan 2005 8:38:24 -0500

> To:

> Subject: Re: Re: LONG update and religious content

>

> Laurie,

> Could you or someone please explain what cardiomyopathy is I know it is heart

> failure I guess I would like to know what are some of the symptoms are as my

> mothers , mother passed away in 1979 at the age of 67 due to I believe

> somekind of a heart block. Both of my kids and myself went through the Boles

> study and came back at greater than 95% with mito and have MIDS well I will be

> tested soon and my mom has been tested and we are waiting for the results. I

> worry about my mom as she does have some heart problems. Also for anyone who

> has gotten SSI/ OR SSDI can you please help me I know it is different from

> state to state but the woman who is handling my son case says she just does

> not know enough if the doctors could just write a little something and I don't

> think they will. He has an attorney but it is at the point where if she denies

> him again than he will have to have a hearing. I am worried that the stress of

> a hearing will put him into a vomiting episode and he will be admited to the

> hospital thanks for your help sorry for all the questions.

> Sincerely,

> Donna K

> ---- whoewe2002 whoewe2002@...> wrote:

>>

>>

>> Laurie,

>> I was just thinking along this same line. My mom has had heart

>> failure (cardiomyopathy) for years as did my grandmother. Up till

>> recently my mom's EF was 25. I'm not sure how she did it (she did

>> have a pacemaker put in 2 years ago but that didn't seem to change

>> her EF until recently). At 75 years old, her EF is now at 55.

>> Maggie

>>

>>

>>

>>>

>>>

>>> I just remembered this. My mother had severe cardiomyopathy as did

>> her

>>> mother (at least we think she did). My mother's heart must have

>> been helped

>>> by the CoQ10. Her heart survived several strokes and being removed

>> from all

>>> but body care. Hopefully once your nutrition problems are solved,

>> your heart

>>> will get stronger as well.

>>>

>>> Laurie

>>

>>

>>

>>

>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained herein

>> are not necessarily those of the list moderators. The author of this e mail

>> is entirely responsible for its content. List members are reminded of their

>> responsibility to evaluate the content of the postings and consult with their

>> physicians regarding changes in their own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends one is

>> automatically moderated or removed depending on the severity of the attack.

>>

>>

[Guest guest]

Alison

I will be honest here and I tell you I don't really know what to say

to you that will not sound trite. Please know that my thoughts and

Prayers have been for you and your family since we met face to face

in Pittsburgh. I have marvled at your strength and your ability to

share your life with us. I am truly grateful for you and this group.

It is so very comforting to know that there are so many friends who

honestly care what happens to us at the end of an appointment, a

hopsital stay or just a " tough day " . I, as well as the rest of your

Cyber Family are sending you an embrace full of :::::::LOVE and

Support::::. Please keep up updated with how you are feeling.

God Bless,

Golden

>

> Just take this for what it is...a synopsis of how my day in

Cleveland went.

> This is my release and the more I talk about it the easier it is

for me to

> accept.

>

> Mom and I were up at 4:30 to get ready and get the shuttle over to

the

> Nashville airport at 5:45. There was a little breakfast at the

hotel. I had some

> of a blueberry muffin and OJ. The flight was turbulent because of

storms but

> not too bad or long. We arrived and Denis picked us up and took us

directly to

> the clinic. I was at my first appt about 20 mins early. We waited

some time

> and then my mom asked if the doc was running on time as I had

another appt in

> 40 mins. She checked and said that he was running 30 mins behind

but that

> they would go ahead and take me back. It took a little while to

get everything

> updated in the computer with meds,etc. Dr. came in a

little while

> later and was ever so nice. My GI who referred me back to him had

never sent

> any letter or any records like they said they were going to back

in early Nov.

> Everything was suppose to be in place and so that the doc would be

prepared

> when he saw me. Anyways..he had no idea why I was there so it took

some time

> to explain and share with him the records that I had with me from

home. The

> most important report he needed I didn't have which is the colonic

manometry to

> see how much of the colon is involved to advice for surgery. As it

stands I

> have been given two viable options for surgery to improve my

Intestinal

> Pseudo Obstruction. The first being a partial colectomy. It would

be a bikin line

> cut, similar to a C-section but a smaller incision and then a

navel cut to

> disect the colon before removal thru the opening. I would be given

a catheter

> epidural that would be put in after I was asleep so that when I

awake I will

> be all numb. I would have a catheter so that I wouldn't have to

get out of bed

> for a couple of days. In my case I will have to have the catheter

to remain

> in quite a few days as I have really bad complications with the

anesthetics

> and my bladder. I won't be able to strain to void after having

major abdominal

> surgery. There would be no nasal tubes or drainage tubes. It would

be about

> a week hospitalization.The other option which my surgeon has

always done

> second is something really cutting edge called an apendecostomy.

It is a more

> minor procedure that involves a navel cut and a cut at the

appedix. The appendix

> is brought to the service and cut level with the skin. It is left

open and

> exposed as the appendix is very dry unlike the colon. Each day I

would have to

> insert a 10 French catheter into the apendecostomy about 2 inches

and

> connect it to some tubing and a bag of hung tap water and flush my

colon until all

> I am passing is clear.This is much better than a cecostomy as it

can't leak

> and doesn't require a tube to hold the opening open and no

dressing is requird

> either. He said your appendix is about the size of a top of a

pen. This

> would be a shorter procedure and hospital stay. My surgeon has

patients that

> have gone both routes and have been very happy. He has had no

complications with

> either. There is a 100% success rate for both surgeries for the

first year.

> There is a 20% chance with the partial colectomy that the prob

could reoccur.

> Then you would still have the option to get the apendecostomy.

It's really a

> hard decision and I keep changing my mind. I was prepared to have

the colon

> removed and if that works then I would be cured of the CIP and I

wouldn't

> have to take any meds or maintence,etc. It's going to come down to

what the

> gastro tells the surgeon about the functioning of my colon. Dr.

is

> calling me Wed. to let me know and to make my arrangements. He was

so nice and

> very descriptive and drew pictures of everything so I could really

understand

> my options. He really gave me hope because either way I go I have

a backup and

> a second option if the first one fails. I'm really trying to not

let anyone

> influence me but it's hard because everyone does seem to have

their definite

> ideas about it.

> We rushed thru the skyway; mom pushing me in the wheelchair with

her coat

> and backpack and purse. Bless her heart! We were late to my mito

doc's appt and

> actually passed him leaving the floor to go to lunch when we

arrived. The

> nurse got me checked in and put me in a room and paged Dr. C. We

had not had

> anytime to stop for lunch and it was nearly 1 o'clock. The nurse

offered us

> some apple juice which we gladly accepted. Dr. C came in a little

later and was

> very nice and we discussed the surgical consult and my weight and

what the

> doc in NY had said,etc. He was going to order labs but I had labs

from last

> week that showed my Albumin to be within normal range although in

the lower

> norm. He was satisfied with that as it was still normal. The appt

was wrapping up

> and I proceeded to tell him that I had had my first abnormal

echocardiogram.

> I gave him a copy of the report and he began typing it all into

the computer

> but never saying anything. It was quiet for awhile and then just

suddenly

> out of the blue he turned to me and said " this is very, very,

concerning! " " You

> are in heart failure, and you are going die. " " Your PCP can put

you on

> Lanoxin to make your heart contract better, but it will NOT stop

the progression

> of this heart failure. It is irreversible. " " If Dr. has

reccomended

> surgery then you need to do it NOW. " I was in a state of shock and

was

> shaking all over on the verge of tears. I know I take him alot

different than my

> mom does but he has a way of almost coming across like a dad when

you're in

> trouble or something. I have very close relationships with my

physicians and I

> take things to heart. I think it wasn't that he was mad but that

he was really

> upset and thru his emotions it came thru to me as being very

stern.My mom

> asked him what he would reccomend as the Boost didn't put weight

on me, the TPN

> didn't put weight on me and I'm currently eating as much as I

physically

> can. He looked at us and very distraughtly said he had no other

ideas for me. I

> knew that my EF being 35% was bad, but until a doc. says it to

your face that

> you have heart failure and it's going to kill you it's just not

the same.

> Reality BITES! I was so shook up! My mom then asked him when he

would be in

> town as we would want a co-admission with him so that he could

take care of my

> metabolic needs. He said that was a great idea and he would take

care of it.

> But when he looked at his schedule he said he would only be in

town thru the

> 13th of Jan and then gone here and there much of the next few

months. He said

> I was not to wait on him for this surgery. At this point my mom is

asking if

> we should even go home at all. He went out into the hall to call

Dr.

> and was gone for sometime. When he came back in he said

that the paging

> system was down thru-out the clinic and that noone was answering

the office

> phone line. He also asked if we had heard of a drug called

Thalidomide. Those of

> you who are older than me most likely know all about it. But for

those who

> were like me and never heard of it I will share the story that Dr.

C shared

> with me. He said it was a drug that came out in the 1950's and

women who were

> preg. took it for nausea because it worked so well. It was never

available in

> the US but women would go to Europe etc and obtain it. Well it

caused these

> horrible birth defects and shortened limbs,etc got a really bad

reputation.

> Then in the 1960's a woman in Israel who had leprosy went to a doc

and he gave

> her this same med and it cured the rash and took away all her

pain. Since then

> it has been studied and used in 2 types of cancer and now for AIDS

patients

> who are losing weight. Something about it helps to halt the weight

loss

> process. Dr. C has been studying it and using it for 10 years. He

said it is very

> safe as long as you aren't pregnant or don't get pregnant. The only

side

> effect is sedation and it would be given at bedtime so could

actually benefit me

> there because I can't sleep well. I aggreed to give it a try so he

went out

> and got a big packet that I had to bring home and study and a disk

for the

> computer to fill out the forms. The thing is you have to get

weekly pregnancy

> tests done for the first 4 weeks and then monthly after that. You

also have to

> prove you are using 2 forms of birth control. Dr. C said

abstinence counted as

> one. It was nearly 2 'o'clock by this time and Denis was waiting

to take us

> back to the airport. We were really in a bind what to do. Dr. C

called Dr.

> one more time from the room and got him on the line. The

conversation

> was very direct, just exactly how he gave it to me. " You saw my

patient

> today and she is here with me now. She has a severe

cardiomyopathy

> due to the weight loss with an EF of 35%. I don't think anesthesia

would be a

> HUGE risk but she needs this surgery done asap. When Dr. C hung up

the phone

> he said Dr. will call you Wed and it will be the first

of next

> week. Everything just went WAY, WAY fast! I have complete and

total trust in Dr.

> as well as my anesthesiologist but I just thought I was

going to

> have more time. I asked Dr. C about repeating my gluthatione

levels since I've

> been taking the NAC for 3 months now. He stared at me blankly for

a few

> moments and then said not to waste my blood. I must have gotten a

funny look on

> my face for then he said " I'm serious. " " You can't afford to

loose one drop

> of your blood. " I remember back when I had the bone marrow biopsy

and I was

> given the same talk then. He said that it was eating my bone

marrow and then

> would go to my heart and then my brain and would not be here

anymore. Dr. C

> told us it was no use to stay just to take our flight home and we

could finish

> the rest over the phone. Now I'm in a holding pattern to find out

when I'm

> going back. It will prob. be this weekend so I can be prepped for

the surgery

> the first of next week.

> We arrived at the airport (still have had nothing to eat since the

little

> muffin at 5:30 a.m.) Quickly called my sis and dad and then it was

time to

> board the plane. We got into Nashville and stopped on the way and

ate fast food

> in the car. It was after my bedtime when we got in, but I was glad

to be home.

>

> We had recieved a belated C-mas gift from my aunt and uncle who

were unable

> to get together with over the holidays due to the snowstorm. My

mom opened it

> right before I went to lay down and it was a Christian CD by

W.

> called Healing Rain. There was also a book by the same title

to go with it.

> It gave me cold chills. If you remember the story I shared a while

back

> about the young boy, Matt Ross, who had cancer and wrote this same

artist and he

> sent a CD and autographed poster for Matt. Unfortunately the very

day it

> arrived he passed away. The title of that CD was " I'll Lead You

Home. " It was just

> like a sign from God as my mom puts it that He is going to send

his healing

> rains for me this year. The song has so much meaning and was just

what we

> needed. I also don't think it was a coincidence that it was

pouring rain

> yesterday in every place we were from Nashville, to Owensboro, to

Cleveland.

> It is my prayer- Lord POUR out your healing rain on me.

>

> Thank you for your prayers as always, love,

>

>

>

>

[Guest guest]

Alison

I will be honest here and I tell you I don't really know what to say

to you that will not sound trite. Please know that my thoughts and

Prayers have been for you and your family since we met face to face

in Pittsburgh. I have marvled at your strength and your ability to

share your life with us. I am truly grateful for you and this group.

It is so very comforting to know that there are so many friends who

honestly care what happens to us at the end of an appointment, a

hopsital stay or just a " tough day " . I, as well as the rest of your

Cyber Family are sending you an embrace full of :::::::LOVE and

Support::::. Please keep up updated with how you are feeling.

God Bless,

Golden

>

> Just take this for what it is...a synopsis of how my day in

Cleveland went.

> This is my release and the more I talk about it the easier it is

for me to

> accept.

>

> Mom and I were up at 4:30 to get ready and get the shuttle over to

the

> Nashville airport at 5:45. There was a little breakfast at the

hotel. I had some

> of a blueberry muffin and OJ. The flight was turbulent because of

storms but

> not too bad or long. We arrived and Denis picked us up and took us

directly to

> the clinic. I was at my first appt about 20 mins early. We waited

some time

> and then my mom asked if the doc was running on time as I had

another appt in

> 40 mins. She checked and said that he was running 30 mins behind

but that

> they would go ahead and take me back. It took a little while to

get everything

> updated in the computer with meds,etc. Dr. came in a

little while

> later and was ever so nice. My GI who referred me back to him had

never sent

> any letter or any records like they said they were going to back

in early Nov.

> Everything was suppose to be in place and so that the doc would be

prepared

> when he saw me. Anyways..he had no idea why I was there so it took

some time

> to explain and share with him the records that I had with me from

home. The

> most important report he needed I didn't have which is the colonic

manometry to

> see how much of the colon is involved to advice for surgery. As it

stands I

> have been given two viable options for surgery to improve my

Intestinal

> Pseudo Obstruction. The first being a partial colectomy. It would

be a bikin line

> cut, similar to a C-section but a smaller incision and then a

navel cut to

> disect the colon before removal thru the opening. I would be given

a catheter

> epidural that would be put in after I was asleep so that when I

awake I will

> be all numb. I would have a catheter so that I wouldn't have to

get out of bed

> for a couple of days. In my case I will have to have the catheter

to remain

> in quite a few days as I have really bad complications with the

anesthetics

> and my bladder. I won't be able to strain to void after having

major abdominal

> surgery. There would be no nasal tubes or drainage tubes. It would

be about

> a week hospitalization.The other option which my surgeon has

always done

> second is something really cutting edge called an apendecostomy.

It is a more

> minor procedure that involves a navel cut and a cut at the

appedix. The appendix

> is brought to the service and cut level with the skin. It is left

open and

> exposed as the appendix is very dry unlike the colon. Each day I

would have to

> insert a 10 French catheter into the apendecostomy about 2 inches

and

> connect it to some tubing and a bag of hung tap water and flush my

colon until all

> I am passing is clear.This is much better than a cecostomy as it

can't leak

> and doesn't require a tube to hold the opening open and no

dressing is requird

> either. He said your appendix is about the size of a top of a

pen. This

> would be a shorter procedure and hospital stay. My surgeon has

patients that

> have gone both routes and have been very happy. He has had no

complications with

> either. There is a 100% success rate for both surgeries for the

first year.

> There is a 20% chance with the partial colectomy that the prob

could reoccur.

> Then you would still have the option to get the apendecostomy.

It's really a

> hard decision and I keep changing my mind. I was prepared to have

the colon

> removed and if that works then I would be cured of the CIP and I

wouldn't

> have to take any meds or maintence,etc. It's going to come down to

what the

> gastro tells the surgeon about the functioning of my colon. Dr.

is

> calling me Wed. to let me know and to make my arrangements. He was

so nice and

> very descriptive and drew pictures of everything so I could really

understand

> my options. He really gave me hope because either way I go I have

a backup and

> a second option if the first one fails. I'm really trying to not

let anyone

> influence me but it's hard because everyone does seem to have

their definite

> ideas about it.

> We rushed thru the skyway; mom pushing me in the wheelchair with

her coat

> and backpack and purse. Bless her heart! We were late to my mito

doc's appt and

> actually passed him leaving the floor to go to lunch when we

arrived. The

> nurse got me checked in and put me in a room and paged Dr. C. We

had not had

> anytime to stop for lunch and it was nearly 1 o'clock. The nurse

offered us

> some apple juice which we gladly accepted. Dr. C came in a little

later and was

> very nice and we discussed the surgical consult and my weight and

what the

> doc in NY had said,etc. He was going to order labs but I had labs

from last

> week that showed my Albumin to be within normal range although in

the lower

> norm. He was satisfied with that as it was still normal. The appt

was wrapping up

> and I proceeded to tell him that I had had my first abnormal

echocardiogram.

> I gave him a copy of the report and he began typing it all into

the computer

> but never saying anything. It was quiet for awhile and then just

suddenly

> out of the blue he turned to me and said " this is very, very,

concerning! " " You

> are in heart failure, and you are going die. " " Your PCP can put

you on

> Lanoxin to make your heart contract better, but it will NOT stop

the progression

> of this heart failure. It is irreversible. " " If Dr. has

reccomended

> surgery then you need to do it NOW. " I was in a state of shock and

was

> shaking all over on the verge of tears. I know I take him alot

different than my

> mom does but he has a way of almost coming across like a dad when

you're in

> trouble or something. I have very close relationships with my

physicians and I

> take things to heart. I think it wasn't that he was mad but that

he was really

> upset and thru his emotions it came thru to me as being very

stern.My mom

> asked him what he would reccomend as the Boost didn't put weight

on me, the TPN

> didn't put weight on me and I'm currently eating as much as I

physically

> can. He looked at us and very distraughtly said he had no other

ideas for me. I

> knew that my EF being 35% was bad, but until a doc. says it to

your face that

> you have heart failure and it's going to kill you it's just not

the same.

> Reality BITES! I was so shook up! My mom then asked him when he

would be in

> town as we would want a co-admission with him so that he could

take care of my

> metabolic needs. He said that was a great idea and he would take

care of it.

> But when he looked at his schedule he said he would only be in

town thru the

> 13th of Jan and then gone here and there much of the next few

months. He said

> I was not to wait on him for this surgery. At this point my mom is

asking if

> we should even go home at all. He went out into the hall to call

Dr.

> and was gone for sometime. When he came back in he said

that the paging

> system was down thru-out the clinic and that noone was answering

the office

> phone line. He also asked if we had heard of a drug called

Thalidomide. Those of

> you who are older than me most likely know all about it. But for

those who

> were like me and never heard of it I will share the story that Dr.

C shared

> with me. He said it was a drug that came out in the 1950's and

women who were

> preg. took it for nausea because it worked so well. It was never

available in

> the US but women would go to Europe etc and obtain it. Well it

caused these

> horrible birth defects and shortened limbs,etc got a really bad

reputation.

> Then in the 1960's a woman in Israel who had leprosy went to a doc

and he gave

> her this same med and it cured the rash and took away all her

pain. Since then

> it has been studied and used in 2 types of cancer and now for AIDS

patients

> who are losing weight. Something about it helps to halt the weight

loss

> process. Dr. C has been studying it and using it for 10 years. He

said it is very

> safe as long as you aren't pregnant or don't get pregnant. The only

side

> effect is sedation and it would be given at bedtime so could

actually benefit me

> there because I can't sleep well. I aggreed to give it a try so he

went out

> and got a big packet that I had to bring home and study and a disk

for the

> computer to fill out the forms. The thing is you have to get

weekly pregnancy

> tests done for the first 4 weeks and then monthly after that. You

also have to

> prove you are using 2 forms of birth control. Dr. C said

abstinence counted as

> one. It was nearly 2 'o'clock by this time and Denis was waiting

to take us

> back to the airport. We were really in a bind what to do. Dr. C

called Dr.

> one more time from the room and got him on the line. The

conversation

> was very direct, just exactly how he gave it to me. " You saw my

patient

> today and she is here with me now. She has a severe

cardiomyopathy

> due to the weight loss with an EF of 35%. I don't think anesthesia

would be a

> HUGE risk but she needs this surgery done asap. When Dr. C hung up

the phone

> he said Dr. will call you Wed and it will be the first

of next

> week. Everything just went WAY, WAY fast! I have complete and

total trust in Dr.

> as well as my anesthesiologist but I just thought I was

going to

> have more time. I asked Dr. C about repeating my gluthatione

levels since I've

> been taking the NAC for 3 months now. He stared at me blankly for

a few

> moments and then said not to waste my blood. I must have gotten a

funny look on

> my face for then he said " I'm serious. " " You can't afford to

loose one drop

> of your blood. " I remember back when I had the bone marrow biopsy

and I was

> given the same talk then. He said that it was eating my bone

marrow and then

> would go to my heart and then my brain and would not be here

anymore. Dr. C

> told us it was no use to stay just to take our flight home and we

could finish

> the rest over the phone. Now I'm in a holding pattern to find out

when I'm

> going back. It will prob. be this weekend so I can be prepped for

the surgery

> the first of next week.

> We arrived at the airport (still have had nothing to eat since the

little

> muffin at 5:30 a.m.) Quickly called my sis and dad and then it was

time to

> board the plane. We got into Nashville and stopped on the way and

ate fast food

> in the car. It was after my bedtime when we got in, but I was glad

to be home.

>

> We had recieved a belated C-mas gift from my aunt and uncle who

were unable

> to get together with over the holidays due to the snowstorm. My

mom opened it

> right before I went to lay down and it was a Christian CD by

W.

> called Healing Rain. There was also a book by the same title

to go with it.

> It gave me cold chills. If you remember the story I shared a while

back

> about the young boy, Matt Ross, who had cancer and wrote this same

artist and he

> sent a CD and autographed poster for Matt. Unfortunately the very

day it

> arrived he passed away. The title of that CD was " I'll Lead You

Home. " It was just

> like a sign from God as my mom puts it that He is going to send

his healing

> rains for me this year. The song has so much meaning and was just

what we

> needed. I also don't think it was a coincidence that it was

pouring rain

> yesterday in every place we were from Nashville, to Owensboro, to

Cleveland.

> It is my prayer- Lord POUR out your healing rain on me.

>

> Thank you for your prayers as always, love,

>

>

>

>

[Guest guest]

,

Thank you so much. I too value all of the support I recieve from this

group. I feel so comforted to know that so many are praying for me and

supporting me. Thank you for your kind words and support.

[Guest guest]

,

Thank you so much. I too value all of the support I recieve from this

group. I feel so comforted to know that so many are praying for me and

supporting me. Thank you for your kind words and support.