Jack Slater's transplant update

[new-sojourn]

My friend, Jack Slater writes an ongoing feature story about his transplant-before, during and after-in the SEATTLE TIMES Seattle WA.  for those of you who remember or care to read his story, Jack published a front page update in today-Sunday"s Seattle Times.

He followed a different road than I did altho our stories are similar.  I tx'd and cleared 3 yrs ago and am back to my globe trotting ways.

i beleive in tx-Schring's peg-inton pen-3 shots a wk for 24 wks-72 shots in all- and daily riba.  And Jack still doesn't.

Who knows who's right?  who's wrong?  b/it does show difference in mindsets.  and outcomes!

[mfsca]

Thanks for posting a reminder of Jack Slater's journey of waiting for a liver transplant and then recovering from the surgery.  I believe that one of the trademarks of HCV is that people are injured in very, very individual ways from it.  Your postings have always been a reminder that there may be a strong life after serious end stage problems. Jack Slater's situation seems like a more difficult path since he still looks so thin and weak even after a transplant.  I have not read his complete story but will now that you have pointed it out.  I don't know if he is even strong enough for treatment with the new liver.  I am very interested in this story and your story because I am 1b and treated with peginterferon, riba and then pegysus for close to three years  and did not clear but it did drop my vl quite a bit.  But now it is climbing again. This spring my doctor said I should get listed for a liver transplant.  Despite, clearly explaining that I did not want one, he has persisted to keep pushing it.  Of course, it may be the best thing and as a doctor he should try to help.  I have compensated cirrhosis.  However, I am fine so far, I have never had anything more serious than swollen ankles and diurectics have dealt with that.    I acknowledge that could change and by three or six months I could be sick. And then again, maybe a year or five years.  But, and this is important to me--I am capable, energetic, happy and really enjoying life now that I am off of interferon and riba.  I am 61, and I have had HCV from a blood transfusion for thirty years. There does come a point when enough is enough.  The father of a friend tells me he has had HCV for forty years and never had tx.  He is very overweight but still happy and traveling and just retired.  Yet, one of my first cousins, a nurse, died last year after 13 years with HCV. I was first diagnosed in 1993 with HCV and in 2000 another doctor insisted I be  tested for a liver transplant.  It was a grueling procedure and I could not believe the cattlecall way I was treated--the hospital (Cedars Sinai--L.A.) was obsessed with listing me despite minimal problems and refused to give me interferon tx. I was told, in 2000, it would hurt me more than help me.  I finally backed out, found another specialist and got tx.  So, now, I am not waiting for some miracle, I am just living, working, and loving my family and friends.  I am not putting my husband through some grueling ordeal. I am more than this disease.  I know as much about the possible new treatments as I need to know, and  I am not going to be reckless. If something wonderful appears to help, great, but I am not going through a liver transplant in my sixties so that I can start treating again to get rid of it in the new liver. I totally understand why a person would do that. When you are dying, a person can be desperate. I have already accepted this situation.  Gosh, I went on but I appreciate you calling attention to Jack's story. It is important to know how everyone is dealing with this. I trully believe medical science is learning as it goes along on this issue. Those of us in the proverbial hot seat have to choose and make the decisions that we can live and die with.

[honey11]

Thanks for posting that,,,,I wish Jack would have done the tx after the transplant like mikesimon did.  The tx is definitely not fun but I feel its not near as bad as Jack seems to think.  I know his wife and him have been through so much with this disease.  Just shows with hep,,,,,nothing is set in blue print! Its crazy that so many can barely know they have it and take tx and clear and then others get so much damage.

[cuteus]

I can't understand the reason for not treating but agreing to a transplant. He is a very informed person and knows that the liver will be attacked by hep c, even faster than his own liver was. Was he never intending to treat? I honestly can't see accepting a precious organ donation with the intention of not ridding yourself of the illness. Perhaps he thought that he had enough time to wait?

[couchpotato]

I agree with Cuteus, why would this man put himself through the transplant and then not carry on with ridding himself of this virus. Seems to me maybe the liver should have gone to someone else who would have given it the BEST chance possible? Did the transplant team know of his decision before transplant? Maybe they wouldn't have given it to him? Ummmm.........

Mattie

[MerrieJane]

What does it take to be put on the transplant list? I have stage 3 (15/18 knodell score) fibrosis.  I know there aren't enough livers to go around.  Does anyone know how this "list" works?

MerrieJane

[johnisme]

They go by whats called a meld score, if you go to the site below it explains it. You can punch in the numbers and it will give you your meld score also.

http://www.unos.org/resources/MeldPeldCalculator.asp?index=98

[Kanzou]

Treating before transplant? Some of your replies are uncalled for. Its not always possible. And to say who gets a liver and who doesn't, that's up to the transplant center and where one is on the wait list. Unless you know personally the real reason behind someone getting a tp, please do not make rash judgements from what you hear in the rumor mill. Keep in mind, some people are diagnosed with HCV when they enter the hospital with late stages of ascites and/or cirrohis and/or hcc. Their only chance of survival is a tp. Tx beforehand is out of the question.

As far as the HCV spreading more rapidly after tp? In some case, yes. However, not with me and many other tp'ers. My docs says it all depends on your health and what one does to maintain a healthy lifestyle. If one watches their diet, excercise on a regular basis, maintain the proper medication schedule, the hcv does grow, but slowly.

I know I will have to tx someday and I keep coming to this forum to be educated on the latest news.

By the way, The Liver Meeting in San Francisco has a presentation by UC San Francisco's Medical Center lead hepotologist on HCV infection, and others, about Interferon causing acute liver rejection in tp'ers tx during the 1st year after tp.

Thanks

[mfsca]

I would never question if he deserved a liver transplant.  My point is that he clearly from the photos looks too ill a year after the transplant to undergo treatment even if he decided to have it. Many people at that point, I assume,  are in much better physical health.  So, again, is this an example of the individual response to treatment/transplant?  The people who have had a transplant must have an idea.  I just don't think that even with all the ducks lined up in a row, doctors can guage success of the procedure and how well a person will be afterwards.  Maybe in another year, treatment would be an option for Jack. Maybe in three or four years, he'll be back to his art and teaching.

[Kanzou]

My best wishes to Jack. I do hope he becomes a tp survivor and returns to his normal way of life soon.

[couchpotato]

I feel I must clarify my last statement and say that in no way did I mean that Mr. Slater did not deserve his transplant and I too, wish him all the best. But, in saying that, I also have to suggest this: Is it not a transplant recipient's responsiblity (for lack of a better word) to take care of that liver and to perhaps do anything possible to ensure the health of that liver if it is within his control? I don't know the facts behind Mr. Slater's decision, maybe new-sojourn will be kind enough to elaborate. My husband will go on tx the minute he gets advised to from his tp doctor's, no doubt about it. We want this damned virus out of our lives! We never asked for any of this, but we will do anything within our power to protect this liver from the ravages of Hep C.

Mattie

[cuteus]

I can see how my post could be read as questioning not treating before tp, but it is not what I said.  There are many reasons why people can't treat before tp or have not cleared the virus pre tp, including non-response to tx.
Of course, I also did not make a judgement as to the deserving of a new organ. What I do find troubling is accepting a life giving gift, with the knowledge that there was no intention to get rid of the life threatening illness.  Planning to wait to tx and carefully monitoring the new liver is an entirely different thing than planning to again live with HCV in the light of a possible rapid progression with no desire to utilize the medications available to take care of the new organ.  I do not know if that is what Mr. Slater planned, I am reading the sentence by NS: " I beleive in tx-Schring's peg-inton pen-3 shots a wk for 24 wks-72 shots in all- and daily riba. And Jack still doesn't."  that makes it sound as if did not intend to use these meds, even if the face of ongoing liver damage.
I might not earn my way to Heaven with the following belief but it is how I feel; I would not want to see the organs from my loved one placed in the body of someone who intended to continue the life that brought him to ESLD, be it alcoholism, drugs, or accepting the damaging organism as a life partner(if in  medical condition to treat).  Thousands die each year waiting for the limited precious organs, and it can't be morally correct to not cherish the new opportunity.  I don't know Mr Slater's full story. My opinion would apply to any organ recipient.  If anyone here would donate their wife, child, parent's liver to an alcoholic, for example,  who would continue his behavior, they are a higher being than me.

[new-sojourn]

Jack was advised not to tx before tp.  We exchanged emails before and I kept urging Jack to tx.  The U of WA has a very good tp unit and hep c unit so I was surprised that he wasn't really offered or encouraged to tx, just tp.

I personally think its all about insurance and who has the bucks and who doesn't.  My liver failed while having a massive esophageal bleed.  The visuals were not encourageing.  B/I had no insurance and no big bucks and didn't qualify for any charity-gov or not.

My option was to go home and die.  until another specialist had me enroll in a study of end stage liver diseasers.  The meds were free, I cl'd in 18days and moved on.

It WAS mentioned briefly that my only hope was a transplant until my poor, uninsured ass was exposed.  then it was unplug her and send her home before she dies here.

Now even if a transplant is successful, there is the on going monitoring and expense of anti rejection drugs, etc.  My l;ifestyle is much more mobile and now alternative medicine oriented.

Bottom line, I couldn't afford a tp b/Jack could.  We both went to teaching hospitals in Seattle and had very different experiences and outcomes.  It's as if we have 2 completely different diseases of the blood.  he's a 1a and I'm a 2b