Transplants

[Guest guest]

>New to the " one list " but not the disease. My husband, who is a recovering

>alcoholic, was diagnosed 2 yrs ago with HepC. A liver biopsy in 1997 revealed

>some cirrhosis. In the months he was arranging participation in the NIH

>protocol for interferon with ribovarin, he was taking milk thistle

>religiously. After 4 mos, he suddenly felt better, and tests showed his liver

>functions went from in the millions to the hundreds of thousands (still

>elevated, but going the right way). He backed out of the protocol (since the

>percentages of its predicted success were dismal anyway) and continued to

feel

>like a new man for about a year. Then alcohol reared its head again, and he

> " fell off the wagon " briefly (a couple of weeks). This seems to have

triggered

>the HepC symptoms again with a vengeance.

Hi,

Check out the following sites for information on how successfully beat

addictions.

http://www.asktom-naturally.com/naturally/addictions.html

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http://www.asktom-naturally.com/naturally/sane.html

The book used in these programs is " Seven Weeks to Sobriety- the Proven

Program to Fight Aalcohol through Nutrition " by Joan s Larson, PhD,

Director of health Recovery Center.

This nutritional therary is also used for other addictions of drugs,

nicotine, bulimia, anorexia, etc.

Jeannette

[Guest guest]

Deb,

With all the info I've been reading lately, I'm starting to think that possibly I might not want to go the transplant route, if & when the time comes for such decisions to be made. I don't think I want to go through all that if a few years down the line I'll be back where I started from. That plus all the antirejection meds & their side effects make me think that the quality of life after transplant isn't what I want.

Don't get me wrong, I'm not a quitter - I'll keep on fighting the dragon tooth & nail ( & I've got some great nails.) It's just that there are certain things that make me wonder if it's the right choice for me.

Suzie

Next time I'm coming back as a cat .

[Guest guest]

Being listed for a liver transplant from HCV is a personal decision that each person must make. What upsets me greatly is that this important life or death decision is made by patients unaware and are not told of all the facts to make the best decision for themselves.

A transplant is not a cure for HCV it is only a procedure to prolong ones life with a shortened life expectancy. The average is 3 to 5 good years post transplant because Chronic HCV returns after transplant for at least 90 percent of post transplant patients if you are lucky enough to receive a transplant because of the severe shortage of organ donors.

I was told these facts but decided I would do everything in my power to prolong my life. I bet the odds for transplant not because UNOS found me a donor because I found my own cadaver donor.

These last 3 years post transplant have been a miracle and a God send that I shared with my family and friends but it also took it's toll on me my family and loved ones. Both my children told me they also gained strength and many positive things from seeing me good through all I did without giving up my strength determination and positive attitude without ever complaining to them. I wonder how many negative aspects stress fear and worry was also caused and how all this affected their lives.

It's very hard almost impossible to weight all the pros and cons all the good and bad and put a price on life even if it's for a short period of time.

It is more difficult after being post transplant with Chronic HCV to decided to be listed again for a repeat transplant. This time around the odds are much less for being given a donated liver and if so Chronic HCV complications and life expectancy is much shorter than after the initial transplant with more complications if one survives a second one.

Where do we draw the line ???

When is Quality of Life more important than Length of Life ????

There are definitely exceptions to all the statics and some have lived many many good years and lives after a transplant.

When is taking the slightest chance better than taking no chance at all ?????

No one every said life was going to be easy but we with HCV must face many more hells than the average person without HCV must endure in their lifetimes.

Take Care and Enjoy Life Now !!!!!!!

Love and Hugs.

Deb

[Guest guest]

My 18 year old nephew died in an auto accident and I lived because of his Gift of Life to me.

My children family and friends left the Transplant Unit to attend his services which were scheduled after my surgery.

I was not upset this week because of my complications and needing a biopsy. I can handle anything HCV throws at me. I have been their and done it before. I get very emotional seeing the hell my HCV continues to put my family and friends through especially my own children.

They were told more than once I probably would not make it because of complications and each time they came in and said their final good byes to me while I was unconscious. To this day they can not walk into that hospital with me without becoming very emotional and they can not go to the 4th floor to the Transplant Unit.

Deb

My Web Page - Deb posttransplantMy web page dedicated to my directed liver donor my nephew and Organ Donor Awareness - 3 pages total with a next button bottom of pages. http://hometown.aol.com/posttransplant/index.html

[Guest guest]

In a message dated 7/3/2006 7:24:03 PM Central America Standard Time,

JJCATHCART@... writes:

Transplants are done with a living donor when your MELD score is down

around 15 to 18.. After that you become too ill and need a cadaver so as to

receive the entire liver. In a living donor you get 65 percent of the

donors.both of your livers grow back quickly to normal size. No.you do NOT go

on

immunosuppression BEFORE transplant....! You do NOT want to go into surgery

with

no immune system.you need to be able to fight off infections.which we tend to

get. I think you need to talk with other docs for their opinion. I had a

transplant 2 1/2 yrs. ago and was on nothing until after my transplant/by

nothing i mean no meds to suppress my system. I of course was on URSO for my

PBC and by then on lasix, blood pressure meds.and a whole pile of

stuff....nausea meds., Atarax for itching...........can't remember them all.

AFTER

transplant I went on Cellcept and cyclosporin. Who wanted to put you on them

before transplant??????????? I really do no go alone with that thinking.

Joanne post tx and doing great

I am on IMuran and getting ready for tx evaluation in Aug/ Sept. Will they

stop the immunosuppression and how long will I need to be off of them before a

tx surgery?

Tammy

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[Guest guest]

Jj Cathcart: The message that you posted regarding liver donors was very good

news for me. I'd received one at the start of the holiday weekend from Addie B.

who's M.D. had told her that people with PBC couldn't use a living donor. I find

it frustrating that all of these doctors opinions vary so. Won't see mine until

July 25th (got it moved up by a month when I called). I have a pulmomoligist

telling me that if I don't get a transplant soon-I'll never pass the liver

function tests (due to problems with apiration r/t Sjogren's syndrome). I've had

almost continuous pneumonia, upper respiratory, and ear infections since

Halloween. And just this past week, I really am ready for Atarax, too.

Do you have information that you could pass on regarding the evaluation of the

donor & recepient? If not, I'm sure that they'll have it when I go to the

medical center. I've just been reading every thing I can find lately.

Jj Cathcart <JJCATHCART@...> wrote:

Transplants are done with a living donor when your MELD score is down

around 15 to 18.. After that you become too ill and need a cadaver so as to

receive the entire liver. In a living donor you get 65 percent of the

donors.both of your livers grow back quickly to normal size. No.you do NOT go on

immunosuppression BEFORE transplant....! You do NOT want to go into surgery with

no immune system.you need to be able to fight off infections.which we tend to

get. I think you need to talk with other docs for their opinion. I had a

transplant 2 1/2 yrs. ago and was on nothing until after my transplant/by

nothing i mean no meds to suppress my system. I of course was on URSO for my PBC

and by then on lasix, blood pressure meds.and a whole pile of stuff....nausea

meds., Atarax for itching...........can't remember them all. AFTER transplant I

went on Cellcept and cyclosporin. Who wanted to put you on them before

transplant??????????? I really do no go alone with that thinking.

Joanne post tx and doing great.

[Guest guest]

is there a fee to be put on the transplant list

I am wondering how long of a lsit they have

sherry

[Guest guest]

There are two descriptive terms used to describe " hematopoietic transplants " .

The first term describes who the cells come from. They can either be from the

patient themselves (autologous) or from someone else (allogeneic).

The second term describes the source of the cells. The cells are either taken

from the bone marrow directly (bone marrow) or from the peripheral blood (stem

cells).

Transplants can be an allogeneic bone marrow or allogeneic stem cell transplant.

They can also be autologous bone marrow or autolougous stem cell transplants.

At the present, most transplants are peripheral stem cell, either allogeneic or

autologous, depending on the indication.

Rick Furman, MD

-----Original Message-----

From: Chonette <chonette@...>

Subj: Transplants

Date: Mon Nov 19, 2007 6:20 pm

Size: 11K

I would like to know what, if any, is the difference from Stem Cell

transplant and allogenic bone marrow transplant. Would be most grateful

for some sort of definition or explanation, I am getting confused about

the amount of terminology on the subjec of transplants.

Sue, you said " It was pure hell at times, 3 months after the transplant

my graft failed, my liver went south and I thought the GVHD was going to

drive me crazy with the skin rash itching " .

Are you still having skin rash itching after all these years? when you

say your graft failed, how did you feel? sorry to be asking all these

questions, but I will have to face some decisions in the new year and I

like to feel I am making the decisions knowing what I am taking on.

regards

Chonette

[Guest guest]

For the bone marrow transplants, the donor has to go through multiple bone marrow biopsies. Because of the discomfort associated with them, they are usually performed under general anesthesia. The only real risk is that of the general anesthesia. Most of the time they perform peripheral stem cell collections because of differences with the collected cells and the fact that it is easier on the donor. There are still some situations where they prefer marrow.

Re: Transplants

> Thank you very much Dr. Furman, your explanation is very clear and > I now understand the differences. > Am I to assume that on an allogeneic bone marrow transplant the > donor has to give the cells from the marrow and an allogeneic stem > cell transplant the cells are from the peripheral blood? > Is there any risk at all for the donor? if the cells come from the > marrow, would the donor have to have something similar to our bone > marrow biopsy test to donate the cells?. > Is it any where that I can read more about the actual work > involved in such procedure. > > regards > Chonette > >

[Guest guest]

Thank you very much Dr. Furman, your explanation is very clear and I now understand the differences.

Am I to assume that on an allogeneic bone marrow transplant the donor has to give the cells from the marrow and an allogeneic stem cell transplant the cells are from the peripheral blood?

Is there any risk at all for the donor? if the cells come from the marrow, would the donor have to have something similar to our bone marrow biopsy test to donate the cells?.

Is it any where that I can read more about the actual work involved in such procedure.

regards

Chonette

[Guest guest]

Thanks Dr. Furman,

This clears up my mind on the issues I was concerned about.

Thanks to all of you that have contribute to this subject.

regards

Chonette

dx 10-02 (aged 57)unmutated, CD38 20%, ZAP70 9%, 2003 Prednisolone 8 weeks 50 mg., 2004 Prednisolone 8 weeks 50 mg.and low doses chlorambucil (2 mg.), 2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14 days off) 6 rounds, 2007 Low doses Rituximab, 2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)planning the future

[Guest guest]

Hey Bethi. Are you talking about Dawn from HCVSupport? I can't remember where she lives but I am thinking it is up by you. She and Wayne do a LOT for Hepatitis C! Wayne designed the shield for the cover of the Georgia HCV Handbook.

http://www.healsofthesouth.org/Hep_C_Handbook.html

I REALLY appreciated that!

Don't let your family get you down. I think we all deal with crap like that because most of us do look good even though we feel terrible :-( Never ending battle! You don't need to justify anything to your family. That is between you and your doc and they should know that!

My friend who was transplanted about 2 months ago had platelets of TWENTY for over FIVE YEARS so don't let the low platelets necessarily stress you out. She couldn't even have them transfused because she wouldn't "hold them" I think I start to worry about people when the Albumin transfusions start though. How is your albumin? Hang in there! The right liver will come along :-)

Peace

Pam

Re: [ ] Transplants

Pam:

Thanks for the info. I went to dr. today and he said my iron is really low, now I'm on supplements. My biliruban is very low, platelets are 35 but he wanted to sit with