Re: LONG update for

[Guest guest]

I know we are not allowed religous content but I will pray for you

when my priest next comes for my home communion ...(((hugs)))

Gillian

>

> 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,

>

>

>

>