New forum _ Liver Transplant

[hcvanon]

New forum _ Liver Transplant!

[DjTurtle]

This is an excellent idea! Unfortunately the number of us needing a liver transplant is increasing. I pray I never reach that stage. I think that is why I am being so stubborn about sticking this tx out! There are many out there that can share their knowledge about transplants for those that are waiting for one. And those waiting can help the rest of us understand the steps that you take to get on a transplant list. And we can all encourage each other here!

Thanks hcvanon,
DjTurtle

[hanklive39]

Hey! I mean Yay!!!

October 8th, 2006 will make it NINE YEARS for me and my "Gift of Life" - Liver Transplant that is!!!

If I can help anyone out who needs to find out more about liver transplantation, please do not hesitate to send me either a personal message or post a question right here!

There are a few individuals in another forum currently waiting for a liver transplant and one of them frequents this forum also so, whoever you are, you're NOT ALONE!!!

I personally am involved with TRIO = Transplant Recipients International Organization here in
Pittsburgh which is known as "Transplant Central" because more  organ transplants are performed here than any other place in the WORLD PERIOD!!! Thus, more people of diverse backgrounds come to Pittsburgh looking for an organ Transplant of any type, especially multiple organ transplants than any other pllace in the WORLD and UPMC has the best success rate of any of the MAJOR transplant centers of excellence in the World, Period!!! 

Anyone that's very successfull performing liver Transplants here in the US more than likely got their training right here in Pittsburgh or @ UCLA although more recently like in the last five years or so, some other university hospitals have been offering training in liver transplantation at their own facilities and yet, Pittsburgh is the place where the first successfull transplants of the Liver occurred... 

The place where the first Liver transplant occurred was in Denver, Co but, unfortunately they were suspended because of a lack of an immunosppressant drug at the time that would successfully  minimize the risk of 'allograft" (transplanted organ) rejection which at the time was the main cause of death in patients that recieved liver transplants during the early days of liver transplantation

Dr. Thomas E. Starzyl, The "Father" of Liver Transplantation still does research here in Pittsburgh and maintains a "Watchful Eye" over the transplant center named after him @ UPMC (University of Pittsburgh Medical Center)... Although he no longer performs the actual transplant surgery any longer, he still contributes to improve the surgical techniques that are the most widely used in the world today - known as the "Pittsburgh Technique" which is also the most successful of the surgical liver transplant techniques out there!!!

Hey! I'm living proof because, If you would've seen how bad I deteriorated health wise when I finally recieved my "Gift of Life" You would then know how much of a Miracle it was for myself to even last this long!!! But do'nt take my word for it, just ask all of the other transplant survivors that were either in Pittsburgh at one time or another or ask them if their surgeons were trained in Pittsburgh, and I'll bet the farm that they would all agree that we all owe our lives to the great pioneering efforts made by the most dedicated teams of surgeons & hepatologists that were first established right here in "THE BURGH"!!!

Dr. John Fung, who was the director of the Thomas E. Starzyl Transplant Center is now in charge of the Cleveland Clinic where he's establishing the clinic as one of the next transplant centers of excellence on the same level as UPMC, is the co-developer of "Prograf ", FK-506 or otherwise known as Tacrolimus, which revolutionized immunosuppressant therapy for recipients of most types of organ transplants today and btw, is the anti-rejection drug that I'm currently using today at a very low dose and with no sides!!!   Dr. Fung, who was Dr. Starzyl's "protoge", is also seen in the world of transplantation as one of the true "Champions" of patient care and regularly advocates in congress, the NIH and @ HHS for patients that would not normally have someone as a voice for them because of their limited financial staus, or any other factors that might inhibit their chances of recieving "The Gift of Life" - A TRUE CHAMPION FOR PATIENTS & MY HERO!!!

If UPMC says you're not a candidate for transplantation then, you might as well prepare yourself to die because, UPMC (Maybe the Cleveland clinic is also performing these types of transplants)  is the only transplant center besides UCLA that will perform tranplants on patients that are NOT accepted anywhere else due to a variety of complications PERIOD!!! Cancer of the Liver or certain other types of cancer are one of the contrindications that will make a candidate unacceptable in other transplant centers and, being HIV positive is another at most centers but, UPMC & UCLA and maybe even the Cleveland Clinic perform transplants on many individuals with these same contraindications every day!!! So if anyone is desparate and cannot be accepted at any other transplant center, there's a very GOOD chance of being accepted at either UCLA in the west or UPMC here in the east!! !

Waiting to help someone!!! BTW, Thanks for starting this hcvanon!!!

Respectfully,
Hanklive39 Lives for Today and Tomorrow!!!

[robin]

Don't know about Pittsburg, but Cleveland Clinic also does living donor transplants, which aren't found in a lot of centers. Soooo....I'll just hang around, listed where I don't want to be until the place I want to be listed gets Medicare approval (new center). Keep your spirits high..robin

[hanklive39]

Hi Robin! The first Donor" liver transplants were performed in Pittsburgh!!! In fact, the first of usually anything that has to do with liver transplantation or any other organ transplant, more than likely was first done in PITTSBURGH!!! Btw, the Director of the Cleveland clinic's transplantation center is none other than Dr. John Fung who used to be my Doctor here in Pittsburgh as the Director of The Thomas E. Starzyl Transplantation Center and he "privately" advocated for my transplant when most of the other doctor's said that I was'nt sick enough although it was very clear  after post -op (when they send the original liver to pathology after surgery to perform a more in depth analysis of the failing organ) that had they've waited any longer, I may not have been able to survive the wait...

It may sound like I'm doing a "plug" for UPMC but, in reality I could'nt care less where anyone prefers to be transplanted I just wanted others to know that if they have a hard time being accepted at any other center for whatever reason - that they contact either UPMC, UCLA or The Cleveland Clinic because, these places will take patients that most other centers reject mainly because they want to maintain their own success rates so that they can maintain the flow of dollars from HHS!!!

Yes it is shocking to read what I just wrote but, It's absolutely TRUE no matter how hard of a time you or anyone else for that matter, may have believing the truth regarding success rates based on one year survival criteria, the reality of it is that most transplant centers shy away from high risk candidates because of the very reason I just stated!!!

I've been one of many patient advocates that have gone down to Washington D.C. more than once to protest for "Fairness inTransplantation" so that EVERYONE could have the SAME, EQUAL opportunities in recieving "The Gift of Life" and, this was barely one year after my own transplant as being the first time I went down to our nation's capital to protest for everyone that was to recieve "The Gift of Life" so that theyn could deservingly so, be able to recieve a transplant of ANY organ regardless of their own exposure to Hep C!!!

I can clearly remember as if it was yesterday that at one of the NIH meetings where the then Heart Transplant Surgeon Dr. Frist who is now the senate Majority Leader, testifiy that it was ludicrus to "waste" organs on "Questionable" candidates when clearly the need was for only the ones that lived "Squeaky Clean" lives and he especially singled out all of us Hep C candidates by stating that we were draining the pool of organs from candidates that really deserved "The Gift of Life" instead of us "Heppers"... Well when Dr. Fung heard that and was sitting next to myself and my friend Ken Vargo, He ran up to the stage of the auditorium where this panel was sitting on and grabbed the microphone from the then Dr. Frist and started to say to everyone that would listen: " I come running up to this stage in protest to what Dr. Frist is commenting on!!!

Dr Fung started out by contradicting the then Dr. Bill Frist by stating: "First of all, the center he represents (Pointing at Dr. Frist!) shows misleading success rates when you compare them to the more established centers, and his comments regarding the outright exclusion of transplant candidates that test positive to Hepatitis C from being valid candidates would regulate these patients to certain DEATH if his and his "allies" proposed changes were to be approved!!! If this happens, it will be transplantation's darkest days and all because of this former colleague's of mine, (Yes! Bill Frist did train at UPMC on how to perform a Heart Transplant!!!) opinion, becoming a reality!!!" Dr Frist's & his allies proposal's were shot down as a result of Doctor John Fung's "Storming" of the microphone and exposing the real Bill Frist - the "xenophobe" that he STILL is!!!

There have been other attempts to discriminate against candidates that have Hep C but, time and time again, they've been consistently shot down as being just that - DISCRIMINATORY!!!

This is why I'm still personally involved in the ongoing fight for fairness in transplantation!!!

Btw, Living Donor transplants have problems of their own, and most of them have to do with the donors themselves, and the Cleveland Clinic is'nt the only center that performs these types of transplants either, even though Dr. Fung is a pioneer in this type of transplant, the Current Director of UPMC's Transplant clinic is also a pioneer in "living donor" liver transplants so, the bottom line is to look for experience, and the guarantee that the donor will also recieve the necessary follow up care and monitoring for the life of both, the patient recipient and the patient donor that traditionally went only towards the recipients!!!

Respectfully,
Hanklive39 Lives for Today and Tomorrow!!!

[DjTurtle]

Hank!
This Dr. Fung sounds like my kind of guy! I know there are many that feel they have to keep it private that they have hepatitis C. I don't fault them at all. I know that you are not supposed to be discriminated against because of having this virus, but I do know, from being in a couple companies higher eschalon (sp?), that there are ways to get rid of an employee if they really want to. What I was getting to, though, was that those of us who can speak out are definitely needed to educate the ignorant. I know that before I knew I had hep c, I had no idea what it was. Some people may think that I put my chronic illness too much at the center of my life, but I will continue to talk about it whenever, wherever, I get a chance.

  It is amazing the things you find out about drug and research and insurance companies that is not good! It is sad. 

Hank, you sound like the person that I should ask this question. Do you know which hospital and/or doctors who do bloodless surgery? More pointedly, do bloodless liver transplants?

Hope to hear back. Thanks again for the info and introducing us to that wonderful man, Dr. Fung!

Turtle does not want to have to do transplant,
DjTurtle

[hanklive39]

Hi DJ!

Thank you for those kind words! Dr. John Fung is one of my true Hero's mainly because, once you get to know him, you realize that he's just like the rest of us down to earth folk!!!

I remember hearing about a former UPMC /Starzyl transplant surgeons named Nicholas Jabbour M.D.  and a Rick Shelby M.D. from USC's Liver Transplant program, already performing "Bloodless" Liver transplants for the last ten years to Jehovah Witnesses  as per their own wishes for the last ten years... Now that it's gaining popularity as an option to the traditional approach of tranfusional blood use in transplants, more and more centers are offering this type of surgical option!!!

Here's their website which also includes an article that one must read with regards to the world's first "Living Doner Liver Transplant" performed with the use of "Bloodless Surgery"!!!:
http://www.surgery.usc.edu/divisions/hep/bloodlesssurgery.html

I'm sure their are more centers than the one I posted that offers this option but ,I could only remember DR. Jabbour who did my initial transplant evaluation @ UPMC when he was a fellow there,  in training by the best in order to develop another generation of top notch surgeons to perform Life saving operations wherever they're needed most!!!

Btw, I also hope that you DO NOT NEED a liver transplant so. you're in my prayers that you achieve success with your current round of treatment!!! I'll look around the web and see what I can find regarding any more transplant centers that offer the "Bloodless Surgery " option!!!

May tranquility and peace become a common occurrance to all on a daily basis!!!

Respectfully,
Hanklive39 Lives for Today and Tomorrow!!!

[DjTurtle]

  Thanks Hank,
I had no doubts that you would find me some information. I read up on bloodless surgery a few years back, and thought that it sounded like a better way to do surgery with less chances of infection and shorter recovery time, in many cases. And I do know that it was first required with Jehovah's Witnesses, but has been seen to be beneficial in many abdominal surgical procedures.
 
I am going to reveal my true hair color with this next question.    As you may or may not know, I saw an ocean for the first time in my life this last November! So you must know that I have never been to either coast before this. Where is USC? University of   Southern California, South Carolina? That article gave me no hint either!  I know there are many getting a laugh out of that question, but I am serious! 

I know that someone will jump at the chance to answer this one! Sheeshcabob!

Inland turtles take a while to find the ocean,
DjTurtle

[OZ]

University of Southern California.  I knew a guy, from New England that had a liver transplant without a blood transfusion there.  He is a Jehovah's Witness so it was his only option at the time.  His religious beliefs prevented any other type of surgery.  He did very well and had a fast recovery.  His brother was his donor.
Donna

[robin]

I think when you take into consideration the limited number of liver transplant surgeons and even with the hepatologists...they all seem to have connections, academically. Like the 6 degrees of separation...only closer. Not being real insistent on getting a liver, but more like, it will happen if that is what the universe has in store for me...I want to stay close to home. Having a problem here because I wanted to clear before transplant and that happened at week 12 but had to quit for other reasons, then I wanted a good hep C infected liver, or a split graft with an infant (which my state doesn't do), I'm all in turmoil with it all. Guess I'll sit back and see what happens...nothing else to do. Hank, you are such an advocate for transplantation and what you say is fact...they do look at the one year survival rate, but your centers that have been transplanting a while, will also give you their 5 and 10 year survival rates. Keep your spirits high...robin

[hanklive39]

Hi Robin!
Your feeling just like I did just before I recieved my "Gift of Life" and I hope that it's a goood sign of great things to come in your future!!! You're expressing yourself in a very similar manner that I did only back then, I did'nt have a forum to do so... All I had were the folks at the transplant clinic and they were just a bit biased for my cup of tea, if you catch my drift!!!

I also wanted the opportunity to clear the virus from my system  but, because I too was "pulled off" treatment due to complications, I was'nt given another opportunity... They kept emphasizing that the risks were too great to continue and I responded: "Well, are'nt the risks involved in liver transplantation just as high - if not higher??" Like Used car salespeople, they kept "reassuring me" that they have the best success rates PERIOD!!! I was pretty bummed out for quite awhile after recieving the news from transplant & my hepatologist that I could no longer stay on treatment, and that the only choice I had left at the time was a liver transplant
So I waited, and waited, and waited, and waited until one day especially after soooo many false alarms from the pager to getting to the hospital only to find out that the liver was'nt a match, I finally got the call to get my butt in ASAP because they were absolutely SURE that the liver was a MATCH!!!!! Almost NINE years & counting, you know something??? They were ABSOLUTELY CORRECT!!!!

During that time of waiting, I made PEACE with myself and GOD... I contacted as many people that I could, to make amends to them if they allowed me to do so... I was Okay with dying while I waited and that was very scary to realize at times because sometimes, I had to pinch myself to make sure that this was really happening to me and that it was'nt some horrible nightmare that would inevitably end soon enough, so I thought!!!

Hey Robin! Keep your Spirits HIGH Babe!!!!! Hank Loves you WOMAN!!!

Respectfully,
Hanklive39 Lives for Today and Tomorrow - THANK GOD!!!!!

[Bettye]

My name is A. J. Stembel.  Doctors in Nashville, TN discovered my Hepatitis C in 1998.  I moved in w/my mom in Cape Girardeau, MO in 1999 so that she could help me while I took Interferon for 18 months.  I was placed on the liver transplant list at Barnes Jewish Hospital in St Louis, MO., which in my opinion is one of the best hospitals in the nation.  In fact, statistics say Barnes Jewish is number 10 in the nation.

I received a new liver in 2002 and a kidney transplant during that same year. 

Keeping a positive attitude is so very important.

[linda]

hi a.j. and welcome to our site. a liver AND a kidney....this was done separately?  it sounds like you are doing very well. i'd like to hear more of your story.  and i agree about the positive attitude. i hope we hear more from you.  ~~linda~~

[Bettye]

Hi Linda:

Thanks for the reply.  Yes, I consider myself a miracle having received two life saving transplants within a year.  My mom has written a book entitled Fighting the Dragon.  It is listed on www.e-booktime.com, click on STORE at top of page, then Health and Fitness on left hand side of page.  It describes how she and I lived through the waiting and the receiving.  Yes, I am in good health considering the anti-rejection drugs and their side effects. I am not complaining!!! 

The God of my understanding has given me another chance at life and my mom says she has been given another chance to be a better mom....my parents married young and had me without really knowing how to be good parents. 

Hope all is well w/you.

A. J. and mom

[hanklive39]

Hi A.J.!!!
When is your anniversary?

I had a liver transplant after waiting around 4 yrs. on October 8th, 1997...
I'm back on treatment again and the results so far are good but, I'm more realistic while at the same time as positive as one can be and forever GREATFUL for the gift of life almost nine years later.

Respectfully,
Hanklive39 Lives for Today and Tomorrow!!!

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