Jack Slater's transplant update 1946-2006

some of you may remember my friend Jack and his series in the Seattle Times(WA) on hep c and his trnasplant 18mos ago.  Well, he didn't make it and @ the end 'welcomed' death.

Jack never tx'd and just went for the transplant.  We had an on going dialogue about who made the right decision-I tx'd and Jack transplanted.

I guess I won b/will always believe Jack could have extended his life w/tx'ing.  Trnasplanting isn't all its cracked up to be.

Rest in Peace Jack.

[NYgirl]

Wow I am so sorry for your friend - but so happy for you.

You made a great decision - and now you can fully appreciate it. This is horrible news I am so sorry for you. But I am glad for you.

Honestly I think transplant is the last option and I would pursue it after tx'ing to rid myself of the virus (if possible) before hand. Plus trying to dial that clock back a bit of damage...

Gosh I just honestly don't know what to say so I'll stop rambling. Sorry for your news new.

[cuteus]

thanks for the update on Jack. Too bad he did not listen to your suggestions, but he made his choice with the knowledge of what the outcome could be. Hopefully, he was prepared for any of the possible outcomes and left filled with acceptance and peace.

[mikesimon]

Gee, you and I have never had an issue that I can recall but....you know that I'm a tranpslant recipient and I gotta ask you: where did you see that transplantation was cracked up to be something? It is a last resort, you know. And the fact that someone died doesn't indict the procedure any more than the fact the someone doesn't clear the virus indicts treatment. Some of us do well and others struggle and unfortunately some of us succumb. I'm very sorry to learn about Jack but I don't like it when I see someone disparage a procedure that saved my life and the lives of many that I know. I did TX and that worked for me too. I was fortunate in both regards but evryone isn't as fortunate. Mike

[Mister beagle bailey]

I'm so sorry about Jack, but happy you made the right choice.  What many don't understand is that the virus is not just in the liver but all organs. Wish he had listened to you, may he rest in peace.  Will say a prayer for him, family and friends.

            Beagle

[can-do-man]

Being a stage 4 and knowing the odds that i have of clearing this. I had a short talk with my hepatologist on being a tranpslant recipient. But with that statement on being its not all its cracked up to be. Has me wondering if it comes to that point would it be worth it. I thought the odds of living longer were better and even being able to tx.

You cleared AFTER your tranpslant right.

[mikesimon]

I'm not sure that I understand your question but I'll assume that it is: "Is tranplantation worth while?". In my case it was and in several other Hep c people I know it was. And, of course, there are other recipients I know who were afflicted with other diseases such as Primary Biliary Cirrhosis and Primary Sclerosing Cholangitis who also are alive today because they were fortunate to have recieved a liver transplant. I don't know Jack's history but hepatitis c is the number one reason for liver transplantation. My opinion is that it would be preferable if the virus was eradicated prior to transplantation but that isn't always possible. And it's not always possible to eradicate it after transplatation, often because of anemia and other side effects and in some cases it just doesn't work. Recently there is evidence that interferon can cause rejection. When I was transplanted that was a big fear but after a few years it was thought that interferon didn't present a risk of rejection. Newer evidence, or the interpretation of recent case studies, suggest that interferon may induce acute and even result in  chronic rejection. It's hard for me to buy since I rejected 2 or 3 times before I treated but never during the 3.5 years that I did TX. But nevertheless I have seen that assertion very recently. My approach today would be to treat with TX and, if time allowed, possibly wait for PIs to treat and hope that the virus would be cleared and that the liver achitecture would be improved to the point where transplantion wouldn't be necessary. I did clear after transplant and I wasn't offered the choice of treating pre-transplant. My liver was pretty bad - I had 2 major esophageal bleeds- and at that time they didn't think that cirrhotics could be treated with TX. That proved to be false. I hope I have been responsive to your question. If there is more that I could tell you please just ask me and I'll give it my best shot. Mike

[can-do-man]

Thanks, i realise theres only so much we can do, then its out of our hands. It is good to hear your doing good. Just some things just smack ya up side your head. Guess you know that to being in that bike wreck though. Best to you going forward.

[strator]

Sorry to hear about Jack Slater

[mikesimon]

Thanks can-do. I know how fortunate I am to be alive after 2 very threatening situations. People ask me why I think I am still alive and I tell them that I think every cell in my body wants to live. I don't think it's because I'm strong - I have determination but I have known others with incredible determination who have not fared as well as I. It's not because of my deep faith either, although I do believe in God. Maybe I'm just lucky or maybe I'm too mean to die. But really, I think it's that my cells just want to live for some reason. I wish you the very best can-do-man. Mike

[dyce]

Cando--how are things today? I've got a pretty strong feelin your liver is gettin better, your just to ornery to stay sick! Keep pumpin the icecream , your gonna be fine.

Mike, thanks for the post, you've been there and I commend you for fightin this thing tooth and nail.

Dyce

[NYgirl]

Pump it up! Doot doot doot do doo PUMP IT UP doot doot doot do doo!

Ice cream is the TICKET! :) Notice how I could NOT get UND UNTIL I started with ice cream and then voila?

Pump it up! Doot doot doot do doo PUMP IT UP doot doot doot do doo!

[couchpotato]

First I'd like to extend my condolences to you, the loss of a good friend is hard for all of us to take and I am sorry you are grieving.

I am bewildered by 2 of your statements and maybe you can explain more in depth what they mean.

"Transpantation isn't all it's cracked up to be". Excuse me but in my experience tp comes at a very high cost...the ultimate cost for the donor and a very real one for the recipient. I don't know that tp is a choice anyone really makes for themselves. Either you need one to stay alive or you don't. A person can not just arrive at the decision on their own and think tp is going to be the answer to all their problems. Along with tp comes a host of other complications and medical conditions that anyone would do anything to avoid in the first place. Tp is the best case scenerio for people with no other options.

My husband tried to tx before his tp but was pulled off when his platelets tanked at 20. Did Jack actually get the choice.....treatment or transplant??? The doctor's in Seattle left the total decision in his hands? If that was the case, you are right, I would have opted for tx before tp but, that's just me. My husband was on a ventilator, kidney dialasis (?) and ICU. He was bleeding. He wasn'e even aware he had the tp until I was able to tell him after the fact. No choice. No options. No second guessing. No promises. Just a second chance at life.

Mattie

[couchpotato]

How are you doing these days Mike? Have to tell you....you sure certainly are not afflicted by any lingering brain fog moments. Always, always so well spoken and concise. Your postings are a joy to read as they are so well delivered.

My hat is off to you, sir.

Mattie

[can-do-man]

If you don't mind me asking, hows your husband doing? And i agree with you on mikesimon. He's a fine gentlemen and after all he's been through he still comes here and leaves us with alot of hope. Been many a time when some one pops in asking about transplant info and i've put out the sos for mike.

Its sad that jack passed on and a family lost a loved one but gave jack a second chance and new-sojurn lost a friend. I don't see where anyone won there.

[couchpotato]

My husband is now 16 months post-transplant and is doing really well. We even went to Mexico for 2 months in Oct. He was not able to complete his tx before tp and we again asked his tp doctor's in Sept. if he could please try tx. They are opposed to it at the moment as all his liver enzymes are normal as is all his other blood work. He never experienced any signs of rejection so I guess the doc's don't want to rock the boat while things are status quo. We want to get rid of the virus but will wait until they decide it is time. He feels way better than he has in years, although a bit more tired but that could be age also. (He's 53)

I guess in some ways tp is a choice, but when he was first told of the possibility, all we could think of was saving his life. Anyway it could be done, we were going to sign on. He is lucky to have not had any real lingering problems post-tp, but a walk in the park, it wasn't. Guess it's not for everyone, but for us, death was something we weren't ready to sit back and wait for. Everyone who is now enduring tx is fighting for their lives, tp is just one major step up. LOL     Mattie

[new-sojourn]

Jack knew since 1997 he had hep c b/decided not to tx b/c of the sx's etc.  He thought he had plenty of time since he didn't feel sick yet.  He had been infected since the 70's.  5 yrs later, his disease had progressed to the point of Jack being eligible for the transplant list.

3mo after the transplant, the hep c came back to attack the new liver-since it had never gone away- and w/in a yr had destroyed his new liver.  Altho many transplant patients gain 4 or more yrs, some even 15yrs or more, some don't.  And he still didn't tx, even a maintance dosage.

I'm convinced that tx'ing will halt, reduce and perhaps reverse liver damage even if the virus persists.

B/people who don't want to trreat won't.

None of us know if we will clear until we try.  And none of us know if we are that 3% who have a virualent strain that can destroy a new liver in less than 18 mo, after it took 20+ yrs to destroy the 1st liver.

Many people think a transplant will solve the problem.  Liver transplants are a staple on the soaps and no one ever has any trouble.  That's why there is a common impression that transplants are easy.

no offense meant mikesimon.  I know your story.  I just think that Jack's story might make help others on the fence to make a decision while they still have a choice.  You never know what can happen.

After my massive bleed and my liver failed, I was told my only hope was to get on a transplant list.  So I know the pressure.  B/I'm a Jeh Witns and that wasn't an option for me.

[beamishboy]

Mike,thanks for your perspective ...we are the lucky ones!!!!
Strator,thanks for your thotful musings as always-You guys are my spiritual guides...
NYGIRL- are yu indulgin in 'Heavenly Hash' ice cream??? i want whatever your having..

[GoofyDad]

Maybe she thought she was posting under the 'Fallen Johnson' thread?

[LvdByGod]

this is very sad to hear to hear... i'm so sorry about your friend... may God bless his soul...

don very nice thoughts... he did things his way, the way he felt most comfortable with his own life... i too had a friend that opted for quality instead of quanity of remaining days when he was dieing of cancer... the meds for his melenoma were destroying him and his family and he had to go off...

interestingly enough he was on (((800ml))) of interferon for it and in a trial... it was making him loose his mind and family and turning him into hateful angry person...so he went off and later he passed on... but after he went off, his remaining time with his family, in the end, was very precious...

you're in my prayers sojourn, take care sweetie...i'm so sorry for your loss...

sandi

[friole]

I am sorry for the loss of Jack Slater.  I had read some of his articles some months ago - I think you provided a link - and thought it was sad, maybe tragic, that he rejected treatment for hep C totally.  Now I am saddened even more that his body rejected the liver.

Phil Lesh, bass player for the Grateful Dead, made the same decision and so far (as I know) his liver has held and given him a new lease on life even though he lives still with the hep C -- here is his story and his websight for anyone interested

http://www.phillesh.net/philzonepages/friends_stuff/hotline-010904.html

We are all trying as best we can.
Kathy

[OnAPrettyPoison]

So sorry for the loss of your friend.  My "real world" support friend lost her husband to HCV and liver cancer.  He was on the wait list.  She successfully treated and just got her 2 years clear PCR.  She is a great source of inspiration to me and knows how frustrating this whole disease and treatment process is.  She keeps telling me how much better I am doing on treatment than she did, but in fact I suspect the meds may be a little kinder than they were three years ago, and I think they step in a little faster with rescue drugs than they did in the past.

[MissMiss]

If I may, I would like to share a short story about my sister.

She did not have HCV, in fact, I'm not sure exactly what she had except maybe zarcids(sp).  She endured an abusive husband for about 20 years, home schooled her four children most of the time, was a great cook, even made her own noodles.  Never drank, smoked, no drugs, no swear words.

Somewhere along the line, either was hit too many times or something chemical or physical happened and her liver went bad.  She lasted about 10 years, during which time she finally got enough strength (or her blood ammonia level got high enough) to get rid of the husband.  Her two oldest daughters always said she was faking, right up until about a week before she died.  

She fought so very hard.  At one point she asked the doctor if she would ever get a liver before hers gave out.  He took her to his computer and showed her that she was at the top of the nationwide list.  She fought even harder.  But, she was on medicaid and it seems the doctors didn't know how to multitask or it was always a Friday when something would happen and she would have to wait in the hospital until Monday for them to decide what other test to do.

But, she kept fighting, waiting and waiting.  Every week her liver would fail a bit more, then the kidneys and so on.  Several months went by since the doctor showed her name on the computer and still no kidney.  Always something.  One time she was taken off the list entirely because she needed some dental work.

In the end, while waiting over the weekend again for a doctor to come in and decide how to handle something, she got a staff infection in the hospital and finally ran out of strength.  

I'll never forget it.  Never in all my life.  I am happy for those who have gotten a new lease on life because of a transplant.  But, somewhere in my mind and heart, I wonder why my sister's turn never showed up.  Of all the people I know, she was one of the most sweet and kind of heart type of person I know.  Didn't drink, smoke, swear.  

Please, don't anyone be offended by what I say.  I just ask that anyone with that new lease would please honor and cherish it for what it is.  Like someone said, another paid a very high price for you to have your new life.  Make it a good life in honor of those that couldn't.  

Thanks for listening.

missmiss

[MissMiss]

But, she kept fighting, waiting and waiting. Every week her liver would fail a bit more, then the kidneys and so on. Several months went by since the doctor showed her name on the computer and still no kidney. Always something. One time she was taken off the list entirely because she needed some dental work.


I meant still no liver.  Sorry.

[can-do-man]

So sad to read that about your sister. I got the feeling from your post that you two were pretty close. Its sad she didn't get the transplant. In her case a transplant would have been  all its cracked up to be. Best of luck going forward and im sure glad your UD.

[can-do-man]

Thanks, im glad he's doing well and mikes doing well. And i hope for me or anyone it doesn't come to that. But if it comes to that i'd rather have the transplant. Best to the both of you.

[friole]

Thank you for sharing your sad and tragic story.  It is a great injustice that medicaid patients get pushed to the back, and that is what it sounds like happened to your sister.
I am so sorry for your loss.
kathy

[Mister beagle bailey]

My heart goes out to you and your family.  Your story has touched my heart as I'm sure all on the forum.  We may never know why someone's time doesn't come for a second lease on life.  Maybe because of her sweet and humbel soul God felt she suffered enough and it was time for her to come home.

A friend of my wife and I has PBC liver diease and needs a transplant, my wife is a match and offered her friend her liver as a live doner.  However, the ins. co. refused to pay as they say her liver is not bad enough yet. Sounds crazy but true.  She is not doingwell and still they say no.

God bless you and your family.

Beagle

[couchpotato]

Your sister's story is heartbreaking and I am terribly sorry for your loss. I don't know about the U.S. medical system ( I am Canadian), but we are all treated as the same here, no matter our income. It would be devestating to think that money played a role in her ability to receive a liver, I truly hope it didn't.

Mattie

[MissMiss]

Thank you all for your kind comments.

My sisiter married right out of high school and her new husband told my father he would not take her away from the area.  Six months later they were gone.  It wasn't until the end that we got to be a part of her life again.  I remember one day I was able to visit her after they returned to the area for a short time and the husband had a huge butcher knife in his hand with one of those leather things to sharpen it.  While quickly sharpening the knife over and over, he looked me in the eye and said "I have never made a mistake in my life."  We always figured we would lose her by his hands.

We tried to get her out but the usual battered housewife syndrom (syndrome) prevailed.  There was a lot to catch up on in the end.  

MBB-I will pray for your wife's friend.  Can the insurance commissioner help at all?  This breaks my heart.  Please don't let her quit trying.  Bless you all three.

missmiss

[mikesimon]

Dyce & Beamishboy, I want to thank you for your kind words. I would like everyone with hep c or any liver disease to keep their own organ if possible. Transplantation can be a hard road and as said it's no cure - it's a treatment.
Mattie, I am so happy to hear that your husband is doing well. I too would like to see him treated and I know that many transplant physicians are reluctant to treat. Anemia looms quite large for transplant recipients and it's almost always a hurdle for people like us. I did reference the new information that suggests that interferon can induce rejection but as I said I will need more hard evidence before I will believe that it does. I know several people that treated and one recipient, aside from myself, who cleared so it can be done. The fellow I am referring to was type 2 so maybe that partially explains his good result. But I was type 1 and I really believe that had I treated with full dose drugs for an extended time I would have cleard on my second TX. That time I cleared but stopped too soon and relapsed immediately. My first was with the 3x per week regular and low dose ribavirin so I don't think I had a chance that time. I pushed my doctors pretty hard to allow me to do what I did but now I think I was correct to push.
New Sojourn: I am very sorry about Jack but thrilled that you're doing so well. I remeber when you first came here and you are a great success story. I don't watch soap operas so I don't know how the transplant subject is characterized. I wouldn't be surprised that the portrayal on soap operas is false - I mean it's a soap opera after all, and from what very little I have seen of soap operas they're not factually based and I would hope that the soap opera viewers wouldn't put much stock in anything they see there.
Mike

[PKCO]

"It is a great injustice that medicaid patients get pushed to the back, and that is what it sounds like happened to your sister."

I don't think that Medicaid patients get "pushed back" in the world of hepatitis c or liver transplantation. In fact, I have a friend who was a medicaid patient and wasn't even on a tp list and she received a transplant. I think my doc is pretty good and I know he has quite a few medicare/medicaid patients. These days, even prisoners serving life get livers. No one is supposed to be "pushed back" and I see no systematic effort in place to do this to any certain population. After all, the hospital could care less who pays them the money--the gov't or an insurance company. There is no incentive to 'push back' patients whose bills are drawn against the full faith and credit of the US treasury.   ;)

To address some of the inequalities that once existed in organ allocation UNOS was created. Their function is to provide a fair framework for potential recipients. They maintain a national database and administrate  the procurement and allocation of organs. (IF however, you have fulminant liver failure like my friend did, the list is a moot point. The sickest goes to the top regardless of "official" listing or not.)

Before UNOS and the MELD system, abuses occurred frequently in the allocation process, without question. So much of the grading/scoring was very subjective at one time  (encephalopathy,ascites,etc). Some people definitely "cut into line". I'm sure there are still a few abuses here and there, but for the most part UNOS and MELD have combined to greatly reduce their occurrences.

Close to ten percent of the people waiting on the liver transplant list will die this year without receiving a transplant.These are people who at one time were at the top of the list but no liver became available before they became too ill to transplant. There are currently about 18,500  on this list.  Almost every transplant performed at my center last year were performed on those who were already in ICU. I have a friend who received a liver 8 years ago. His beeper went off while he was on the golf course. They still give out the beepers here, but in these days of extreme organ shortage they are rarely, if ever used.

Best regards,
PK

[mikesimon]

I agree with you 100%. I was one of those guys that was paged but I wasn't on the golf course. I was in my office when I got the call. I was ambulatory and I was riding my motorcycle every chance I got. But I had had 2 major esophageal bleeds so I wasn't in good shape by any means. On a routine scan a lesion was seen and it was in a place that couldn't be biopsied. The physicians suspected cancer and had me get a chest x-ray. When it came back clear I got moved to the top of the list and was transplanted within 1 month. As it turned out my liver was not cancerous. I was so very lucky. I was in the hospital 5 days only. I wonder what would happen to me if I presented with the same syptoms (symptoms) and values today. Mike