liver transplants

[pete c]

MY names pete C
I came on here late last yr. Now have gotten all the end results of all test.I have geno type 3 hep which is the good news.Stage 4 which i just found out yesterday.It sure has knock the wind from my sail.The doc is telling me about liver transplants,and tkeing the interfeon treatment befor .I do not know if this is all needed  the treatment prior to transplant.The doc said he is sendind me to pittsburg pa to doc out there to see if i m a  good candadate for  trans plnt.The one question i have is does any one know how long the process is at stage 4 befor your liver stops working? and how long does one live at this point.Im sorry for just poping up again not one to share alot with people yet now im just not sure of any thing I feel like i was handed  my last chance card  and cant fine any hope at this time. thanks for letting me cry on yall, shoulder i just dont know what to do.Yea the doc said it,s going to hard to fine aliver do to the factor i have a rare blood type. Well God bless you all and you have been in my prayers.

                                                                                    pete c

[Helen]

Pete,
 Im sorry to hear this. Im glad you came back because support is so important.

 None of us can tell you how long stage 4 can last, BUT it can go for many years if you take care of yourself. You can also clear in stage 4 though its harder it has been done, and I believe there are a few here that have done it and one for sure.
 You havent said how your health is? And why is your Dr. considering transplant at this time? All is NOT lost and you DO have hope. Being geno 3 your chances of clearing with treatment are fairly good as compared to 1's.

 Im sure others will come along that will give you more input. Please remember you have options and just because your a stage 4 dosent mean it's over.

 keep asking questions, there are pleny here who can help you thru.

 Take care, Helen 

[MissyMouse]

Pete,

I know there's at least 3 people here who are gonna respond to you so keep checking back. 

Take a deep breath in the mean time.  Like Helen said, lot of people live very long lives with stage 4.

Keep us posted and I'm sending good positive thoughts your way!

Mouse

[Hank's mom]

Hi petec -
The news of a transplant is really scary - I know because I recently was put on a list. In some ways I am glad because it means a new door has opened and liver failure has a solution, and yet it is a big thing. I have met with almost all the members of the transplant team. (I still have to meet the 3 other surgeons as no one knows which one will be performing the surgery.

I'll share what I've learned so far:
1) A transplant saves your life by giving you a fresh liver which will ultimately make you stronger and take away much of the fear that hep will ruin you.
2) It does not remove the virus from your body, in fact you can get a liver or part of one, you only need a half or so as the liver can regenerate, from somebdy with the virus. Remember none of us will ever be totally free of the virus as even those cleared have it in their blood forever. Don't let this knowledge stand in your way, honestly, a new liver is a life saver.
3) Having a rare blood type can work in your favor as it reduces the length of the list that may precede you. I too have a rare blood type. It is actually harder for those with the most common blood types because there are so many more candidates.
4) Transplant specialists may want you to go on treatments before transplanting, they may not, it all depends on how advanced the scarring to your liver is. I am a nonresponder with no new wonder treatments at my disposal. So I am going in with an unchecked virus. On the other hand if the doctor decides that you go on treatments first, the doc and team will monitor your status much more carefully and make sure you have helper meds to keep you strong and not impact your liver.
5) Try to make sure you have absolute faith and can communicate easily with both the hep doc and the treatment doc or teams. This is so important, probably the most important because your comfort and sense of security will help bolster your health and ability to withstand treatment and surgery. That said, bring a written list of questions with you so you remember to ask them. It can be awfully hard to remember all of it when you are dealing with such big, spooky issues. If you can bring a buddy to listen to the responses you might not hear as well. (Sometimes I bring a tape recorder if I can't bring a buddy.)
6) Give yourself time to manuever around this information. And, if you're not already in therapy, see about a good therapist who has dealt with people who have chronic illnesses. It is hard to go it alone and a therapist will help you have a safe place to talk about your fears and struggles. Many times he or she can teach you ways to cope. (My transplant team insists that candidates do have therapy which I already do, but if you don't they may provide you with someone. (All transplant candidates are required to do this by my team.)

I was told early on when I was first diagnosed that a transplant MIGHT ultimately be needed. Not to scare me, but just as fact because you never know. I was terrified then, but now know how important and liberating from at least one of my fears it is. Everyday I wonder if I'm up to it and then remember my life is important for myself and my family. I ain't going down without a fight and if this is part of the fight I am ready to have at it.

Please don't be a stranger here where there is always support and understanding from those who have been there in one aspect or another. We have your back in other words.

Be steady and calm,
momxfive

[pete c]

Hello eveyone,
I thank God today that he gave me the courage to write  to you all.to answer your questions? 1 my health is good at this pont in time.Im still working at my job,yet tire out fast,I have been taken vitamens and drink alot of water which seems to help some.My liver gets to hurtting after awhile dureing the day,my stomach is not too extended at this point and time.My head has been like a box of fire works going offf at the same time, with toughts.I have been in AA for the past 3 yrs and working the steps and staying on my knees asking for helpfrom God.I will ask my doctor today about getting help dealing with all of this.I just want to say thank you for your support and kindness,it reallly has help me see this in anew light.I will keep you in my prayers and thoughts.
                                                              petec

[Angel]

Hi Pete
          I have been stage four since 2003...and I'm doing okay considering it all...I'm a 3b and have never done Tx and will not be doing so since MY doc's say that it would do more harm than good.... I do have pain, some days worse and some very little to none... I have meds for when I need it...I'm hoping to get listed some day...my meld score is 9 so I have a ways to go...but over all I'm doing damn good...I have to take naps LOL...then I'm good to go !!! Hang in there and try not to worry too much..any questions feel free to ask...Hugs for you...Angel

[robin]

Hi Pete...I was diagnosed in 2002, biopsied and told I was a stage 3. Within 3 years...I had gone to Stage 4 and early decompensating and now am listed for TP with a MELD of 19. I am going to ask about treating again when I go to the doctor on Tuesday. I tried in February and almost didn't survive it because of the decompensation. There is no way to really tell how quickly you will progress to end-stage but if I was a genotype 3...I would treat. It has to be a personal decision and something you feel comfortable with...I'm comfortable being proactive...especially when there is such a fine line between stages and so many factors that determine how quickly you will progress. Good luck in whatever you decide and keep your spirits high...robin

PS...when I was diagnosed...they told me that even if I didn't treat, at age 49 (then)...I would probably die from old age and now at age 54...if I don't get TP'd...I'll die of liver failure secondary to Hep C.

[pete c]

Hello Everyone
I just want to thank you for the support and help.I just want to let you know that i,am still hereand waitting  lol .the doc said that he wants to do a EGD on me to see how my throat is doing.My health at this time is pretty good im still working get tired very easy though.My doc isgoing to be setting up an appointment with a doc at pittsburgmedical center to talk to me about a transplant and too seeif iam a good canadate for one at this time.since im still at stage 3. I Just want to let you al know that you are in my thoughts and prayers,I hope Robin is doing well ,just remember that life may not be fair but God is always faithful.I hope all had a nice Thanksgiveing I know that i have alot to be thankful for. Well take care.
                                                                               Pete C

[19Dragon52]

(((Hey Pete)))

It's Dec. 8th already and was wondering what's up and if you have anything recent going on?!  Keep in touch, okay?

Love & Support.....

[hanklive39]

Hi Pete C.!!!

So far from what I've read, you have been given some excellent suggestions from everyone who has responded to you!!!

First, let me introduce myself... My name is Hank and I'm also a "friend of Bill's"... I also have Hep C, and I also found out after being sober after three years that I just might need a liver transplant.

I was also told before that time from other doctors in NJ that I had liver cancer and had roughly two years to live, only to find out that I was misdiagnosed yet, I was sent a bill for 800 somewhat dollars for those two doctors to shake my hand, and I forgot what the CT cost!!!

Anywho, I got a second opinion and was diagnosed with stage 3 liver disease with HepC, got on treatment as one of the first using Interferon in massive doses (up to 800 million units per day, five times a week ) for roughly 6 months and then, 500 million units per day until I could no longer handle it physically or mentally because, it turns out that I was what is now called a non-responder.

Once I got off the treatment, I thought and felt much better so I thought!!!
Anywho, I went back to work as a Boilermaker/tube welder and started to travel for work around the east coast until one day in 1993 while working at a Co-generation plant that Bechtel was building in Colver, PA... That is the day my health started going bad!!! My Verisces in my esophagus ruptured (That's why your Doctor wants to do a procedure of your throat) and I was bleeding internally at an uncontrollable rate due to the clogging of the Portal triad which normally controls the flow of blood to and from the liver and is normally working properly...

However, when someone has liver disease no matter what stage, the portal triad can become clogged because the tissue either from the liver or at the triad itself may become cirrohtic, necrotic or both causing the clogging therefore interrupting the flow of blood... So what does the body do? it sort of reroutes the blood flow through other vessels in the body such as the verisces around the esophagus!!! However, the problem with this is that fact that th portal triad is a bigger & thicker bunch of blood vessels (Arteries 7 Veins) - sort of like heavy wall piping, and the blood vessels around the esophagus are not anywhere nears as big -sort of like thin wall interior plumbing...

The pressure that was being handled by the blood vessels in my portal triad were too much for my verisces around my esophagus so, something had to give - causing them to rupture.

I ended up vomitting blood at the 1186 ft. elevation of the power plant during lunch time...
My foreman took one look at me and told me to go home or go to the hospital although, he could've called an ambulance but did'nt because of all the paperwork he wanted to avoid!!! Btw, he's no longer with us from what I heard.... I believe it was a car accident or something to that effect!

Anywho, I drove myself all the way down to Johnstown, PA which is quite a ways from Colver but at the time, my Ammonia levels were so high, It did'nt seem like a long drive to the ER where they took one look at me and immediately put me in ICU... T They could'nt believe that I drove all the way down there by myself...They tried to perform sclerotherapy via and endoscope to close and repair the ruptured verisces but, ther was too much blood coming out of them that they were going to perform a shunt operation sort of like the one Robin had only in a different spot, and they were going to do it the next morning..

My Mother and my Sister arrived the next morning just as I was about to sign the consent form...
My Sister asked for a second opinion, and that's when this Pakistani doctor who was the surgeon decided that his integrity was being questioned by my sister and mother!!! He started yelling at them:  "How dare you question my integrity, my skills!!!" Then he started mumbling something in his own language which got me so mad that inspite me being as weak as I was and full of tubes all over the place, I got up from my bed and turned towards the doctor and in my most intimidating voice roared out loud: "Shut the @#%$ up!!! If I hear you disrespect my mother or sister again, I'll come back from the dead and kill your %^&&in ass DEAD COMPRENDE??? Diana! Get me out of here!!! You are no longer my doctor because no one speaks to my sister or my mother like that ever!!!"

Whithin about a half hour to 45 minutes later an ambulance came to transfer me to another hospital nearby which had a heli-pad... I was then Lifeflighted to UPMC The University of Pittsburgh Medical Center... I arrived there passed out with my blood pressure reading 80 over 60...

I believe it was the next day when I regained conscience, waking up only to think I was in heaven because when I opened my eyes, I was surrounded by what I thought were angels!!! They were nurses in the ICU, about 6 or 7 of them all smiling down on me, and I was totally unaware that they had just finished towel bathing me, so here I was in my birthday suit for all to admire, only to be embarrassed by the fact that I was butt naked in front of all these female strangers!!! I quickly got over that and felt quite royal about the situation but, that situation ended all too soon!!!

The Doctor in the ICU came to visit shortly after I woke up, and was abandoned by the nurses to inform me of my condition... He informed me that they performed sclerotherapy on me, and repaired the ruptures in my verisces without having to perform a shunt operation... That was the good news!
The bad news was that I had ESLD otherwise known as End Stage Liver Disease and that he wanted to refer me to the Liver Transplant clinic at UPMC...

Well, they ran all kinds of tests on me and told me that my liver has'nt totally decompesated yet but, it could happen at any time so they put me on the transplant list and every three months for about two years I went to Pittsburgh from New Jersey to get examined by the transplant clinic and get more blood work besides the monthly blood labs that were sent to them from my PCP in NJ...

Two years after I was put on the waiting list, (Prior to MELD scoring) my Mother and I decided to move to Pittsburgh in order to first reduce the amount of expenses it was costing me to get to the tri-monthly appointments in Pittsburgh from NJ. It was also hinted to my sister and me by my nurse coordinator that it would be adviseable for us to move to Pittsburgh because that would put us higher on the transplant waiting list, so we did!!!

I was again put on Inteferon treatment shortly thereafter, and in a very short period of time, was taken off it because of severe reactions I got from the treatment. now at the time the treatment was quite different that what isused today so do'nt let my experiences deter you from seeking treatment because the medicines today are much better tolerated by everyone!! In fact, I'm on this new batch of inteferon and ribavivarin treatment on a much lower dose and only once a week which my body and mind tolerate just fine!!!

Two years later, the call finally came in and on October Eighth, 1997 I recieved the Gift of Life!!!
All the waiting and stressing out was over so I thought... After all, I had a second chance in life!!!!
At first I thought it was going to be smooth sailing after all I've been through!!! Sure!!!!

Let me tell you something that I learned along the way to where I'm at today...
I learned that NOTHING that is worthwhile is easy, and I also learned to stop complaining that everything has to happen to ME!!! Why ME??? that's what I used to always whine about until a wise man told me that God only gives you what you can handle!!! "Well," I said to this great person who's no longer with us: "According to his eyes, God must think that I can handle alot!!!" He laughed and said: "Apparently so!!!" He also suggested to talk about your fears until they turn into faith in God that everything is going to turn out well, and that all of your needs will be provided no matter how impossible thing may look to you as long as you have faith in your higher power!!!

So talk to someone about your situation like Momxfive suggested... You also have your AA meetings where you can also talk about some of your fears and temptations, get a support network involved with you so you do'nt feel alone in this journey you are about to travel through... I can tell you this because I've been ther done that but, I also did it mostly alone and that is something I strongly DO NOT suggest for anyone to do - PERIOD!!! It will be better for you to have people around you that will be there to support you especially when you start feeling all alone in your situation.

Robin just recieved her Gift of Life this Thankgiving, and now she's on the road to recovery!!!
Wow!!! What an "Alive day" or second birthday she'll have to celebrate from now on!!!
She's  REAL Trooper!!! Heck, I kew all along that she'd do well after her transplant because of her attitude towards life and people!!!

Who knows, maybe the doc's in Pittsburgh will say that you need to be on treatment first especially if your liver is not as damaged as your PCP may be estimating... When do you have to go to Pittsburgh??? If it's before Christmas or you have'nt gone yet, send me a personal message and we'll meet before or afterwards! After all I've been living here for the past 12 years and know where everything is around here!!! If you want, I'll go with you to your appointment so I could explain to you in laymans terms what, and why they want to do with you with respect to being a candidate for liver transplant. Let me know soon so I can fit it in to my own schedule Okay???

Do'nt Worry!!!! You're not alone in this so please respond to my offer Pete!!!
Remember God LOVES YOU UNCONDITIONALLY!!!

Respectfully,
Henry

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[Hank's mom]

Dear Pete:
Were it me and I had Hank up in the Boston area I would take him up on the offer. I don't what you do for a living and you say you're still able to work, because as Hank years before the transplant actually did happen. On the other hand if work causes you to stress your body then listen to what your body is saying and back off on the work. Financially, this wait and subsequent surgery and recovery time will do to your pockets what the transplant will do to your old liver - toss it out. I'm fortunate to have good insurance, but my low copays can be pretty stiff as well as eating appropriate foods (healthy stuff like fresh fruits and vegetables cost a heap more than frozen or canned. There is also everything else that insurance doesn't cover such as living expenses specially as the docs will want you to initially want to remain in the Pittsburgh area. I am already looking for a living situation in Boston because my house is over one and half hours from the hospital. So unless you have Aflack or another insurance like that, it'll be a tough one to pull off. (Massachusetts doesn't allow for some insurance companies to be used here, IDIOTS, so that is not an option for me.)

My team recommended I contact liver transplant funding programs via internet. They can help you organize fund-raisers, as humiliating as that might be, and also oversee the accounts so you don't have to worry about rent or utilities or whatever while you're flat on your back. I have already begun the process, large gasp o breath!, and put out feelers for who might be able or want to assist me in this. (Did I mention - I HATE THIS VIRUS!!!) Again, the last thing you would want to interfere with your healing is financial concerns.

Anyway, I'm glad to hear your renewed faith and take much comfort from it - it's a powerful and empowering tool.

 If you want to chat further PM me - we're in this together.

With all the best wishes for you -

momxfive/Susie

[robin]

Hi Pete...having just gone through the TP system and receiving a new liver on Thanksgiving...I was a bit surprised that the TP team never suggested any kind of financial needs (in Arkansas) though when listed in Oklahoma...they did mention fund-raising. I was only hospitalized for four days and so far...two and a half weeks later...we have not been surprised by any major bills. Initially after TP, I stayed at my daughter for about a week and half since we are about an hour away and they wanted me closer. I'm now at home and am doing quite well. It appears that my co-pay for meds is going to run around $650 a month for now but that means we will just cut back on other things. I was listed in Oklahoma for two and a half years and don't think I was even close to being transplanted. I became listed in Arkansas in September and received my liver just a couple months later...a total shock. I do wish you the best of luck and keep your spirits high...robin

[pete c]

Hello  Everyone
I just read all your letters, and thank you very much for the support and prayers.On the 26th i go to the doctors for the EGD.I guess i will find out more the.I got my list of questions to ask the the doc as to my opptions at this time.I am going to ask him to transfer me to pittsburg U.PMC as i have been told my others that it,s one of the best.As far as insurance all i have is thru work bc/bs this is why im still going to work while i can.Im getting my family doc to write me a note saying that im not able to work over time,any more  it takes to much out of me.Thank you all for the hope and guidenss as to what to ask and what to do.I will keep you all in my prayers  with God in one Hand and Bill Win the other life is very good.

[Hank's mom]

Hi Pete -
Glad you got the info you needed here - the more armed the better. Just a quick note about insurance. When i was first diagnosed, plus needed surgery on my back and had kidney stones to deal with, my insurance was also thru work. My boss accomodated me for awhile as I paid the full amount thru her to keep the rate, but then when I found out how long a process tx, etc. would be, I switched to COBRA which keeps your same rate (plus the copay your boss threw in). They can't say no because of pre existing, the law, and you "buy" about 18 mos. to find an alternative. Can't remember if Jersey has a health insurance plan which reflects your income, but if you go to your Rehab/disabilities office you may find out that that is another addition (insurance) that you don't have to worry about - a free mind is a healthy body. You can also ask at the hospital finance office who will much of the work for you.
Just listing some options you may have at your disposal -
Susie

[hanklive39]

Hi Pete!
May I ask where your residence is?
Momxfive mentioned New jersey in her last post... Is that where you live?

Just to inform you ,there is an excellent Transplant Center in new Jersey also so ,unless you're considering to relocate to Pittsburgh in order to get listed and find a new Primary care Physician, a new life, considerable expenses on your part would have to be incurred just for relocation but ,that's just what I did because of new Jersey's poor record and limited existing opportunities for one to be listed at the only hospital that performs liver transplants in new Jersey currently.

Look at this recent article in the New York times:
http://query.nytimes.com/gst/fullpage.html?res=9D01E4D9163DF937A15752C1A960958260

It's outrageous that a state with such a large population only has one active liver Transplant center of excellence, eight transplant centers all together, when just across the river, the New York City metro area including Long Island which now has 11million residents compared to new Jersey's 8 million residents, has 22 hospitals offering organ transplants... I would imagine that across the river, there are more than one liver transplant center of excellence!!!

In fact, when I needed a liver transplant, I could'nt have been listed at a better place than UPMC because in those days, ther were even less transplant centers of excellence in both new Jersey or New York until after I got listed @ UPMC!!!

Whatever decision you make that is, if you need a liver transplant soon will be yours to make!!!
However, one thing for sure is that here in Pittsburgh, You'll have many resources to support you but bear in mind that you'll need to relocate and find work here if necessary, and a new Primary care Physician in the place of your currently existing one or, either drive or fly here every three months, car rental, hotel expenses meanwhile, apply for medicare, and wait at least two years before you become approved that is unless your current insurance will cover you for all of the expenses... If you're a Veteran, you can now opt to recieve a liver transplant at any of the Liver transplant Center's of excellence with the VA covering most if not, all of the expenses!!!

During the time I was waiting, I could've had my liver transplant at the VA medical center nearby but, I would've had to wait longer, and would've probably died waiting!!! So that's naother option that you might consider that was'nt available for me years ago when I was waiting. 
Do'nt worry because you're not alone in this!!! So, there it is!!! Reality can be overwhelming sometimes!!!

Respectfully,
Henry

Respectfully