LONG update and religious content

[Guest guest]

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,