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Anyone had or schedule to have liver transplant due to Hep B

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Posted 7/30/2006 4:38 AM (GMT 0)
Gay man with chronic Hep B.  Been on transplant list for 1.5 years.  Dealing with pharmaceutical side effects. Getting anxious to have transplant and move on!  Would like to chat with anyone with similar situation.
Posted 7/30/2006 12:25 PM (GMT 0)
Hi, and welcome! Do you know anyone who might qualify as a living donor? What state are you in? Mayo Clinic (Rochester, MN, Jacksonville, FL, and Phoenix, AZ) have the shortest wait time in the nation for a transplant (I believe it's 4 months, but you can check their web site.) I thought I would need a transplant (as a result of hep C and liver cancer), which is how I got involved with Mayo. I didn't qualify for transplant, as my liver function is still good. However, through their cutting-edge knowledge and technology, they have been able to kill almost all of a very large, inoperable liver tumor. You might want to check it out, if you have insurance. They do not take HMOs, but will take Medicaid as a secondary insurance and Medicare as a primary.

I know there are some caregivers on here whose partners are waiting for transplant. Maybe they will hop in with some more input.

Good luck!
Connie
Posted 7/31/2006 12:27 AM (GMT 0)
Connie: Thanks so much for your prompt reply. I hope to hear from others just as quickly. I live near Nashville, TN and I am a patient of the Liver Transplant team at Vanderbilt University Hospital. Funny you should mention The Mayo Clinic. My current doctor at Vanderbilt has bee promoted to an administrative positon at the Medical School. His re;pacement, and my new doctor, will be dr. Perri, who will be coming from Mayo. as for a living donor program, I have only 10% functionality of my liver, so a living donor option is not applicable. I really am just seeking chat buddies that can relate to the waiting issues, the side affect issues, the anticipation issues, the surgery issues, etc. So I welcome any and all comments, particularly from those with like cercumstances.
Looking forward to receiving replies,
Michael.
Posted 7/31/2006 2:29 AM (GMT 0)
"my new doctor, will be dr. Perri, who will be coming from Mayo."

As long as you don't take my Ortho Surgeon, who is the only one there who has
the expertise to operate on my nonexistent hip socket and crumbling pelvis.

I can relate to the waiting, in regard to the liver. I was supposed to start a new drug study the beginning of Jan. Then it was delayed several times. I had artery mapping and found out that the TheraSphere couldn't be done because of too much flow to the lungs. We tried something else, which worked well, and 2 months later I was able to have the TheraSphere. I'll have a scan in two months and see how well I did with that. It's a roller coaster ride for sure. I can only advise you to "go with the flow." Vanderbilt is a great hospital and medical school, so you should feel comfortable in whatever they do for you.

I hope you get some other input soon from the members here.

Connie
Posted 8/1/2006 8:37 AM (GMT 0)

Hello Michael and welcome to the forum! Sorry I didn't respond sooner, I work weekends. I am my husbands caregiver, he has HepC and cirrhosis, he is currently waiting for a transplant. He was listed in June, but it seems like it took forever, to get on the list. We have really been feeling very desperate lately, he is having alot problems with the fluid despite diet and diuretic theraphy. Hope to hear back from you soon.

Hugs

Teresa  

Posted 8/2/2006 1:55 AM (GMT 0)
Teresa: Your husband is very lucky to have a caregiver. I do not have a family member that can take on that sort of responsibility, so I will have t eventually arrange for a sevice to maintain my care after my surgery. I soo have to deal with the fluid retention. It really bothers me because I have always been very gym oriented and body concious. Well those days are long gone! Has your husband hade difficulty with muscle athrophy. I have lost all muscle definition I had worked so hard to maintain. Docs say that I want be able to regain that. How long have you guys been waiting on the list and where are you located (if you don't mind me asking)? If you know of anyone who's liver disease is because of HepB please let them know I would like to talk with them through this forum.
Thanks so much for your response. It means so much to me. My best to both you and your husband.
Michael.
Posted 8/2/2006 3:52 AM (GMT 0)

Michael, you are very fortunate that you are able to care for your self. My husband is not able to do that. He has trouble with encephalopathy, often also...to the point that it does scare me to leave him by himself while I work. He went into a coma in April. He has lost quite a bit of his muscle mass too! He has had problems with malnutrtion also, so he drinks nepro to help with that. He was in the hospital for a week last month, They put a catheter in his abdomin, and drained fluid off daily giving albumin replacement as well. He lost over 25 lbs. of fluid in that week. Now it looks like they will probaly being doing more paracentesis. I'm not really sure what the plan is going to be, because his renal function is taking a beating. Hopefully we will get the call very soon for a transplant. We live in Arkansas, his transplant will be at UAMS in Little Rock. So we are kind of neighbors here. The waiting time in Arkansas is not a very long wait actually, the clinic is pretty new, it opened in April of 2005. My husband has been on the list for 2 months now. My prayers and thoughts are with you!

Teresa

Posted 8/2/2006 7:17 AM (GMT 0)
hi michael,welcome
my husband has hep b,with cirrhosis,,,,,,,end stage ,,and i am his caregiver,,i can no longer work,,,he also had triple bipass 2 weeks ago and is back in the hospital with congestive heart failure,,,,,,,he started back on interferon treatments too soon,but the drs wouldnt listen to me,and told him to resume them,,,,,,im not sure what lies ahead for him,or me,but he has told me NO transplant,,,,,,,told me to let him go if it comes to that,,,,,what a hard thing to ask of someone,,,,,,,,,we are still awaitin ss,,,,,,,they have put him off yet again,sayin heart conditions require bein put on hold for 3 mths due to evaluation,,,,,,,,i asked the guy if they are waitin on my hubby to die,,,seems like thats exactly what they are doin,,,,,,,,,,,,hm,,,im rembling,sorry yall,,,,since ricks bypass i havce had absolutely no time to vent,so its comin out all at once..hope ya keep comin back michael,this is a great place for support,,,,,,
Posted 8/2/2006 1:52 PM (GMT 0)
{{{{{{{{{{{Trish}}}}}}}} So sorry for all you are going through. I know it takes its toll, emotionally and physically. I can also understand where your husband is coming from. It is said that the strongest emotion is the will to live. However, when the body has gone through so much, it feels impossible to gather strength to go through more. As you know, docs are wanting me to have the rt. lobe of my liver excised to make sure there are no stray cancer cells. Of course, my hip needs surgery very soon. They virtually want me to have one after the other. I just don't feel I am up to that. I have also filled out a new Living Will stating no extraordinary measures, including food or liquid if only to keep me alive.

Regarding SS, sad to say that I have seen a couple of friends who were not approved until a week or two before they died. Have you asked about SSI? If his illness is expected to last at least 12 months, he should get something from that...depending on when he filed. When you file for SS, they also evaluate for SSI. Of course, then they take that money back, if approved for SS. I forfeited the 2 months of SSI in order to get my SS going. They make it almost impossible for the average person to understand all their rules. It's just crazy.

Hang in there, sweetie.

Hugs,
Connie
Posted 1/2/2007 1:42 AM (GMT 0)

Dear Mike:

  You wrote "I have only 10% functionality of my liver, so a living donor option is not applicable."  This refers to your liver. What stage are you in?  Are you in stage 3? What percent of your liver must be working to get a living donor to give you half? Please let me know.

Jarlett

Posted 1/3/2007 3:24 AM (GMT 0)

Jarlett:  I have been told by my doctors that a partial transfer is only applicable if the recipient has no more than 60% damage, and it is very rare for the transplant to be done at that stage.  Usually living donor transplants are done with minimal damage and the "if, ands, and buts"  MUST be in place for a successful outcome.  Remember, with a living donor you then have two patients going under the knife. all the more reason for the transplant to be successful.

The doctors have ascertained that I have only about 10% function through my bllodwork and reactions to my meds.  I asked if I needed to have a biopsy to determine the level of damage to my liver that the hepatitis has caused, but the doctors told me that a biopsy is not always neccessary.  My meld score is holding steady at 14.  2 years ago my MELD score was 18-19.  The meds I have been on have bewen nothing short of a miracle when it comes to my staying healthy.

When I was first diagnoised, I had 3 hospital stays due to encephalopathy, lapsing into coma each time.  My meds have kept the virus from doing any further damage to my liver and it seems that I have actually gained back some of my liver funtion.  That, of course, is not the case, but the regime of meds and my diet are proof positive that I can live with this horrible thing!  I am still not able to work (been on disability for 1.5 yrs.) because of meds side effects.  I have to pace myself due to the extremem fatique that seems to come quicker with each passing week. I also have insomnia sooooo bad....obviously leaving me exhausted.  The diaretics keep the fluid retention controled and the laculose (YUCK!) keeps my toxicity in check.  Currently I am taking Hepsera and Baraclude (anti-virals). 

So with all of the meds, the doctors monitoring, and diet I seem to be "stuck" in a good place....but as we all know....the waiting is the worst thing to deal with (thank goodness for thearpists!).

I hope this info helps you with whatever you are seeking.

Take care Jarlett...

Michael

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