Transplants

[hopiangel]

Has anyone here known anybody or had a transplant themselves?  My 35 yr.old nephew has been told that he will have to have a transplant if things get worse and that's happening now.  What options are open if waiting for a liver is not what he wants to do? He just doesn't want to wait around and waste the rest of his life maybe waiting for a liver. It probably will come to that, but is there anything else??????????? I'd appreciate input if anybody has info that relates. This nephew is very special to me and my husband, we are devastated because we got by with TX for 6 months and "got well."  We've lived our lives but he's just too young to face all this trauma in life yet.....I want to know also the odds of surviving a transplant at his age. I'd appreciate any help.  Thanks, **Hopiangel**

[scooz]

HI,I had my transplant at 48yrs of age.I am at my 5yrs now.Had my bloodwork 2wks ago.Doing great.Waiting for my 1yr pcr right now to see If I am still clear.Did 6 months of pegasys and riba last yr.Was clear all the way through.Bloodwork was one of the best I have ever had.I am still anemic from the treatment I guess.I tend to go anemic every now and then.Last biopsy last year was a stage 0 grade 1.They said the grade 1 was just the residual effect of coming off the treatment.My transplant was a breeze was only in hospital 5 days.No complications.Good luck to you,and the best to your nephew..


Steve..

[Showboat]

Hopi::: Sorry to hear about your nephew....I hope everything works out well for him.  I am sending prayers.

Scooz::: Wow....I am so happy to hear that you are doing so well. Bless you.

Chevy::: How are you feeling????  I am so sad that you have been having so many challenges with tx lately...I am praying for you and your brother.

[new-sojourn]

You may want to read a report in 5-19-04 USA Today under Health.  The jest is that 'marginal' livers are now used in transplants and livers are often planted in the surgeons' own patients, not the sickest according to the MELD score.  Also, in -02, 16,974 people needed liver transplants, 5,060 received transplants-only 359 from living donors, down 30+% from 2001.

So, you better also have the right doc, not just a high MELD score.

[cindee]

Hopiangel, I don't know much about liver transplants, but I do know that Prayer works...I will lift your nephew up to God in my prayers tonite. Much love, Cindee

scooz, Wow what a wonderful testimonial. Sounds like you've really kicked "dragon butt". I wish you the best of health and to remain CLEAR for the rest of your life!!!! Sincerely, Cindee

Scott, Hey, I haven't talked to you in a while. I hope you are feeling good these days. I admire your words of wisdom and I always look forward to reading your posts. You have been a God send to alot of us here. You are so well informed...I wish we could "copy and paste" your knowledge into my brain! Thanks for always sharing your information with me. Much love and many prayers, Cindee

[new-sojourn]

i never thought you were serious and i, too, am amazed at a 5 day recovery.  I also thought that the news that the standards for donor livers have been lowerd and that the allocation is unfair, favoring the less sick b/connected and rich is disturbing.  doc C on his web site clearly states that one's best chance @ a transplant is to be healthy w/great insurance and resources.  Altho I always kinda beleived him, I was still a little shocked and disappointed to find out he's right.

[mikesimon]

I thought you'd have your 1 year pcr by now. Let us know when you get it because I'm rooting for you big time. I too was out of the hospital in 5 days. That's not typical but they do like to get you out of there if all goes well to minimize the risk of infection. I got mine in Pittsburgh and Karen drove me in early afternoon. We were going through the Fort Pitt tunnel at around 1:30 pm on Friday. The following Wednesday we were coming home and going through that same tunnel at 2:30 pm and I couldn't believe I had another man's liver. It seemed like just yesterday when we were going into Pittsburgh. Of course I was anesthetized for most of Saturday so I wasn't conscious for the whole 5 days. It was almost sureal. Good luck Steve. Mike

[mikesimon]

<a href="http://www.medscape.com/viewarticle/477529?src=mp/"> Article on Non Heart Beating Donors

[couchpotato]

God, 5 days!!!!!!!!! That is something to hold onto and remember! We go to see hubby's transplant team on May 31 for another evaluation, we are optomistic that things have not progressed further and that we will be told to come back again in another year's time. I was wondering if anyone knows the answer to this (I will also ask the team). If I am able to clear this disease would I be able to volunteer to be a living donor for my husband?? I would do it in a heartbeat, but maybe they won't want it. What do you all think? Thanks

[Honey15637]

I will be thinking of both of you guys on that date because I know how scary this can all be and overwhelming at times!  Great question....And I am like you if possible if I could clear and my hubby couldn't...I would do same also as I know he would for me.  I guess it all depends if you guys are a match for each other, blood work and all.. Some days I feel on top of world and some days...I wonder how I am going to get through the rest of this year!  I had a bad one awhile back,,,just one of those days...headache constant, and feeling depressed and told My husband that night,,,,I don't think I can make it through the rest of year.  His words...You will make it and so will I as we both will Carry each other if need be to the Finish Line!  Couch...I cried that night out of happiness that the support is so strong so in a nutshell...I know exactly what you mean about donating part of liver and I think of you both so often knowing exactly how hard it can be at times!!  My prayers are with you both!!

[couchpotato]

Yeah, that's it in a nutshell. We both sound like we are in very loving relationships, that man is my right arm and I would lay down my life for him, as he would for me. The thought of losing him paralizes me, but, we will trudge through the difficult times as we have the good, and with alot of trust and faith we will both survive. In the past 6 years we have lost his father, my father, our best friend and then my mom 3 months before getting his diagnosis, to say we have been through the ringer is an understatement. So, we have many angels on our shoulders to help carry our burdens, and it is of some comfort to me. (course, I would give anything to be able to whine and cry to my "mommy" at times!) LOL. Good luck to you and your husband, honey, and yes, you can make it. One day at a time, right??  Couch

[couchpotato]

Thanks for the kind words, you are some kind of cheerleader, lady! Now all I have to do is kill this son of a b-itching virus and maybe if things fall into place I can have the honor of trying to save that man's life. Couch

[new-sojourn]

I went thru a different tunnel-kinda white-b/I was turned around and sent back!  I decided my chances were slim to none.  I reached transplants, life on the waiting lst, my REAL chances w/no insurance.  Liver transplants are so common now, few are comp't any more.  My blood type O neg.  Knowing I would be way down on any list, having to relocate to a big city, undergo all that testing, having to justify past behavior-esp since I'm a transfused vic-and take only 'approved' drugs seemed like death to me.

I chose to tx and stay home to either live or die.  Imkindly pointed out that 18 people a day die on the waiting list.  The average wait is 23+MO.  I am so greatful I was able to tx and cl.
My 'incident' was almost 30mo ago, so I beat all the odds so far-varicies mortality rate is 50+% within 2 yrs of 1st incident.  Transplant list is 23+mo, w/25+% mortality.  Liver failure is within days or weeks,uncontrolable bleeding due to non-existant clotting factors is real quick.

B/here I am.  Healthier than I've been in yrs.  The mental change is the most remarkable.  The severity of the 'hepatic encephalopathy' completely altered my personality.  My step bro has brain tumors and once when I was explaining the returning mental facilities, he said "At least your mind is coming back!"  Another reason to feel lucky!

I think that 'hepatic encephalopathy' is the most overlooked sx of hepatitis.  I can kinda monitor it by watching protein consumtion. Usually, when I can't remember phone #'s, I go veggie for a few days.

[Honey15637]

Well see...you have a game plan going and I can tell...You are focused and noone but noone is going to get in your way!! You are right...we will get through this one day at a time because you sure can't look to far in future...haha I do remember when I told my husband...I wanted to quit and after we rationalized why I can't...He says anyways...if you do...would you feel normal again tomorrow??  haha Noooooo  As we all know alot of times...it takes a while to get out of our system so yeah..I think alot of times we just scream but know we are on a one way train at moment and can't just jump off.  I'm sorry to hear that you both have lost loved ones and yes I do whine to my mom alot and love her for listening so greatful I have her still with me! Of course...You do know you have all of us right here to listen....

Yeah....What would we do without Chevy cheering us all on and making us laugh with her stories...She adds so much to this board and that is what we all love about her!

[couchpotato]

I have always read your comments with great interest and have a great deal of respect for what you have been through and how you have managed to beat so many odds. Your story is a long diffult one, and obviously you have fought tooth and nail to have gotten where you are today, do you mind if I ask you a few questions? First, you have had ESLD and all the complications that involves but do you know what kind of shape your liver is in now? Did you have cirrhosis and has that reversed to some great extent? Also, I know diet and nutrition is a big thing to watch (I never realized before I started reading the labels, how much salt is in everything, and I know the veggies that are higher in Vit.K, Milkthistle, Vit.A and such), but what else are you doing at home to help yourself heal? It can get so confusing and overwhelming at times. Anything you can think of, can you pass it along to me?? Thanks. Wow, having a day off for a change without a shot under my belt is wonderful!!!   Couch

[asmitaj]

I needed your advice on my father-in-law's health.

His condition has been diagnosed as the following:
Advanced liver cirrhosis,
oesophageal varices grade 2,
portal hypertension,
liver shrunken
chronic hepatitis C
Alpha feto protein (afp) value is 8578.

Please advise whether it is possible for him to undergo a liver transplant under these circumstances.

Thanks.

[asmitaj]

I wanted to add some more information to my earlier mail An ultrasound was performed on my father-in-law and the ultrasound report suggests a sol of approximately 50*52mm (tumor).

His hepatitis C infection was diagnosed in June 2002.
He had 6 months of anti viral therapy of pegylated interferon with ribavarin In december 2002, his HCV RNA count was less than 500 so treatment was discontinued then.
From January 2003 to December 2003, no anti viral therapy was given to him.
In December 2003, HCV RNA quantitative tested positive. Count was in some lakhs of cc/ml.
He is approximately 61 years. And has a history of diabetes for the last 6-7 years. His diabetes is in control using oral medication.

Please advise whether it will be possible to perform a liver transplant in the immediate future. Waiting for your reply.

Thank you in advance.

[cuteus]

Please  post your question in the top threads as you would have a better shot to get answers from the many patients that frequent this forum.  That is what you will find here, patients. there are no doctors monitoring us yet, but many here have gone through end stage liver disease and can advise on their experience.

[AK - Hepper]

(size=8) big? (/size)

[cuteus]

since i am bored and at lunch, idecided to peek at the bottom.
I am afraid to ask what is size 8, and what are you testing?
;-}

[Showboat]

Hi, Cuteus!!!!!!!  I am just curious if you will check to see if you got any responses way down here...................................................ANYWAY........here I am saying "Hey"
I was wondering what that "secret code" by *****AKHepper***** was myself.......PEACE

[Showboat]

Welcome to "down under" teeeheeeee

[Honey15637]

LOLOLOL  Remember...."Don't start that bullshit" in bigger size no less!  A.K, was checking out sizes haha or at least it appears to be,,,,,ROFL  too cute!!  Mr. Hepper...we love ya! And I want to hear some cajun lingo!! haha

[W SPOUSE]

MY HUSBAND HAS HEP. C- TYPE 1a PLATELET COUNT 46/NO TREATMENT
MILKTHISLE 3X A DAY, VITAMIN E HE ALSO HAS HAD VARISES & THEY’VE
BEEN REMOVED 3 DIFF TIMES IN 18 MONTHS- TAKING NADOLOL. WE’RE
WAITING FOR NEW MED. 3-5 YEARS AWAY. HE FEELS GREATBUT DOES
HAVE STAGE 3 -ANY SUGGESTIONS THANK YOU GOOD LUCK TO ALL
W SPOUSE

[cuteus]

Please feel free to post your question in the top threads, not too many of us come all the way down to  read posts, as you can see we were bored and playing and that is how we got here. You will get a lot of responses if you post in the upper threads.

showboat; lol what a silly game we play, I never got a response to my test. lol