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Posted 11/19/2009 1:52 PM (GMT 0)
Hi, my husband, Gary, and I live in northern Vermont.  Gary is 51 and has hep c.  He has cirrhosis and was put on the transplant list at Mass General in August of this year.  His MELD is 21.  His diet is lots of fresh veggies and fruits, cranberry juice, water, oatmeal, cream of wheat, fish, eggs, protein powder, and one cup of coffee every morning.  He takes lots of meds:  xifaxan (1200mg/day), furosemide (80 mg/day), spironolactone (200 mg/day), lactulose (15 ml 3x/day), prescription zinc, prescription vit D with calcium, prescription magnisium, multivitamin w/out iron, hydricodone, tylenol, and insulin (nova log, short acting 23 units premeal and lantis 55 units every morning).

 

Gary is dealing with all the same things that everyone else is.  Hepatic encephalopathy, low red and white blood cells, high ALT and AST, low albumin, low platelets, low eGFR, etc. . . He sleeps a lot, has abdominal pain, leg swelling, headaches, itchy skin, red spots, weight loss, leisons on his liver, nausea and more. 

 

He was first diagnosed with Hep C in 2002.  He has a tatoo, but he also was in a bad accident in 1975 and believes he had a blood transfusion then.  So how he contracted the virus?, not possitive.  We started seeing a hepatologist in Burlington Vt, in December of 2007.  His viral load was 1.3 million.  His Dr. recommended treatment, but left it up to us when we wanted to start.  At the time, Gary was an owner/operator of a tractor trailer.  He had a contract with Home Depot.  He was doing well, working hard, making plenty of money, our third child was a senior in high school and our youngest was on her way to Chile in Sept. of 2008 for an exhange year thgouh the Rotary for her junior year in high school.  The other two were in their 2nd and 4th year of college.  Things were going quite well.  The kids are still hanging in there, so things are still going quite well, just not for Gary.  My life is not so "nifty" either, but I am hanging in there.

 

So anyhow, I wanted him to start the treatment as soon as possible.  His strain is 1b, so that means that he had a lower chance of the treatment working, but at the time, we were told at least a 50/50 chance, maybe higher.  So we started the treatments in May.  By July first, there was NO WAY he was safe driving, so I forced him to quit, I filled out all the disablity paperwork and Gary continued treatments.  Unfortunately, by this time last year, his blood cells were so low, platelets, hemoglobin, etc. he had to stop treatments.  His viral load was down to 2500.  So I had hope, but within a month after treatments stopped, they shot back up into the millions.  In December he was approved for SSD (but that was a huge, huge, huge, huge ordeal.  Pretty much a books worth of b.s., but we got it without a lawyer.  I think I should be a consultant I learned so much!)  Financially, we are hanging in there.  Since we still had kids in school, we got a little extra, so that made him feel better.  Gary is a proud hard working wonderful husband and father!  I am so lucky to have him my life.  This is a second marriage for us both, but our blended family has worked out great for us all.  We met in 1997 and got married in 2001, so his son and daughter and my son and daughter all grew up together, basically.

 

Well that pretty much brings us to the present, give or take a lot! lol.  He is now a man that is very sick.  I am very worried about his survival.  We have worked on our Advance Directives together.  We have spent many hours crying and worring.  As like everyone else, I keep hoping I will find information online that gives me a time line on his life, chance of survival, when to expect a transplant, etc.  All I have found was statistics or case studies on MELD values.  If you google MELD 21, I found quite a bit of disturbing information.  At the MELD calculator page, I think its the Mayo one, there are other calculators to use that give you an idea of what to expect. 

 

I guess I should stop, this is already turning into a large post, sorry.  I have really enjoyed reading and getting to know some history on all your lives.  My daughter would call me a "facebook stalker"  lol.  It has helped me to read about everything you all have been through.  Our stories are very similar.  I look forward to becoming part of this community, it looks like a good one!!  smilewinkgrin

Thanks, Allison

Posted 11/19/2009 3:32 PM (GMT 0)
Hello Allison and welcome to HealingWell. So sorry that your family is dealing with this but I am so glad you found our family. And yes, we consider everyone family as everyone is dealing with liver disease in one way or another. So we understand all the stress and fears each one of us are facing.

It really helps to communicate with others who really understand what we are going through. For me, I have learned so much more and received so much support from this forum that I was able to make it through the liver disease journey in one piece. It's a lot harder trying to get the information you need to fight the battle just from the doctors. So this forum has been a life saver to me and lot's of others.

Sounds like that you are a very strong woman. Just remember to take care of yourself too. It's easy to get so caught up in it all that you forget about or put yourself last. Once in a while you have to put yourself first.

Take care......thoughts and prayers........
Posted 11/19/2009 10:39 PM (GMT 0)

Allison, I also want to welcome you to the forum.  Your SS disability expertise can be helpful to others on here.  Meanwhile, I take it that your husband is on a transplant list, but you are wondering how long he has to wait for transplant?  That depends on the availability of a donor. 

The question of How Long? is impossible to answer, as liver disease is such an individual thing.  It is best not to even focus on that, but to do what needs to be done now and to enjoy the time you have left, as much as possible...though I understand that's rather difficult when the patient is so sick.

Please do remember to take some time for yourself, as PG suggested.  And again, a big welcome to our family.

Hugs,

Connie

Posted 11/20/2009 3:50 PM (GMT 0)
Hi Allison,

Hep is right, no one can answer "how long", but humans being what they are, keep trying. One tool to determine prognosis is the Child-Pugh score. My understanding is that the Child Pugh was replaced by the MELD score several years ago as an indicator for the need for a transplant, but as a prognosis indicator its still used. More info on Child Pugh is here: http://en.wikipedia.org/wiki/Child-Pugh_score and an online calculator for determining it is http://homepage.mac.com/sholland/contrivances/childpugh.html Also, ask your husband's GI what his prognosis is, that answer will usually be given in years which I find more informative than survival percentage. His GI has the best answers you will get to your questions.

Each hospital determines its own guidelines for liver transplants. Mass General usally won't take you in for a transplant until your MELD approaches 30, and as I understand it, Mayo-Jacksonville will transplant as low as 16.

How did the evaluation process go for you and your husband at Mass General, how was their response time? They are evaluating me now for the list and things seem to be proceding slowly, but perhaps they are just swamped.
Posted 11/21/2009 12:46 AM (GMT 0)

Kierstin, thank you for that helpful information.  I have bookmarked it for future reference.

Hugs,

Connie

Posted 11/21/2009 5:52 AM (GMT 0)
Kierstin,
Mass General was very thorough. It does take a while. We were at Mass General for two full days of testing and meeting with the transplant team and support people. Then Gary had to do blood tests to determin his MELD. Are you working with Dr. Pratt and Abigail?

Sorry it is late and we are having a rough evening. Both Gary and I are afraid and there is lots of tears tonight.

I do have more to tell about SSD. I will post that tomorrow. Good night!
Posted 11/22/2009 7:40 PM (GMT 0)
Allison,

I have never met Dr Pratt and Abigail.

It is difficult when you are feeling very sick and have all sorts of emotions, but try to keep a positive outlook and enjoy each day you have together. Best wishes,

Kiersta
Posted 11/27/2009 4:01 PM (GMT 0)
Hi Allison,
I received a liver transplant at MGH four months ago, and things are going well. My MELD score right before the transplant was 24, but had been 13-18 for five years. Prior to that (2004) I went through the interferon cocktail therapy, all seemed fine and then three months later had a cerebral hemorrhage then two weeks later a seizure. That's when my Hep C really took over and I got on the transplant list. Dr. Pratt and Abigail took care of me until the transplant team took over in July. They were outstanding, as was my primary care physician. My surgeon was Dr. Hertl and he too has been amazing. If your husband has a MELD score of 21, it might be wise to explore getting into the MGH transplant program. I checked with the Mayo Clinic in Jacksonville(4 years ago) and they did a lot of transplants at fairly low MELD scores. Now I've heard that so many people have heard of them, it's as easy to get a liver at MGH. As I said, my score was 24, though my blood type is B+. More common blood types often require higher MELD scores. One final detail, part of the reason I was given a new liver was size of my liver and the donor liver. I weighed 150 pounds, and I'm 5' 8" tall. Now I'm 143 pounds. This is my experience, yours may be different, although many of my pre-transplant meds and symptoms were identical to Gary's. **David**
Posted 11/27/2009 10:19 PM (GMT 0)

David, I just wanted to welcome you to the forum.  Congratulations on your successful transplant!  Also thank you for the information you shared.  I've been going to Mayo Jacksonville since '05 and they do have many more patients overall than they did at that time, especially since their hospital opened its doors about 1 1/2 years ago.  Prior to that, Mayo Clinic patients had to use St. Luke's Hospital, which was inconvenient for both patients and doctors.

I hope you will come here often.  We love to hear success stories, especially from the patients themselves.

Wishing you continued good health!

Connie

Posted 11/28/2009 1:00 AM (GMT 0)
Hi hep93,
Thanks for the welcome. When I spoke to the Mayo Clinic, they said they had done something on the order of 240 liver transplants, and that was at least 2-3 years back. I also had a conversation with someone in the Lahey Clinic. Both of the above clinics were really pushing their program. It was like:"Have I got a liver for you." It might be due to me having Blue Cross/Blue Shield health insurance. **David**
Posted 11/28/2009 3:17 AM (GMT 0)
David, I doubt the insurance played a part...as long as you had some that they accepted.  Their program was fairly new at the time.  Also, they were (maybe still are) sometimes using what would be considered subobtimal livers; i.e., putting a hep C positive liver in a patient with hep C.  Has treatment been mentioned to you yet?  As you know, hep C is a blood borne disease, so if you have chronic active hep C...it will affect your new liver at some point...though it may be many years down the road.

Connie

Posted 11/28/2009 5:14 PM (GMT 0)
You're right about insurance, the type probably didn't matter...just that I had some. But there's no question that insurance does make a difference to doctors and hospitals. When I went in MGH 5 years ago for a cerebral hemorrhage they kept for 5 days, then put me in rehab for another week. My roommate was ushered out after 3 days and he was practically comatose. His insurance didn't cover certain procedures and had a limit on costs. BC/BS (at least my plan) has no dollar limit.

I was told that they might put me on interferon prior to getting a transplant, but it happened so suddenly, so that never took place. I'm going to MGH for a check up next month and will ask my surgeon about further treatment. I had Hep C for 40 years without any knowledge or apparent effects from it. If I can get 40 years out of my new liver, I'll be 99 when it craps out. What really looks promising are the protease inhibitors to help knock down Hep C. I do realize that they're being used in conjunction with interferon as a cocktail. **David**
Posted 11/28/2009 5:26 PM (GMT 0)

Having insurance and "the right kind" does make a difference.

I know I contracted my hep C in '68 or '69.  I started having extreme fatigue in '89, but it wasn't followed up until '92 when they finally had a test for hep C.  Once a person starts to have symptoms, things tend to go downhill fast.  The next thing to become available adds a 3rd drug to the cocktail.  There is probably research being done on stem cells, as well.

Connie

Posted Yesterday 5:39 AM (GMT 0)
VTAllison, Mass G is a great transplant hospital. My husband went to Beth Isreal, he was listed at Lahey but they were not patient friendly, we were very uncompfortable there so we went to BI as we liked Dr Curry and Dr Afdhal. We also heard alot of great things about Mass G from the Dr at BI. It is true that most Transplants are done with a higher meld in New England in general. More patients less organs is why. I am known in three hospitals as the research queen! I kept a three ring binder with updated med lists ,every discarge summery and all labs by date current in front to oldest. We had alot of labs done locally so they would print me a copy and fax boston. I also had VNA here helping and made sure they gave me copies of notes that way any hospital we had to use I had all the answers to all questions. The ER here in town knew us on first name basis and my book was well known, Dr's loved it. Knowledge is not your enemy. There are small things that can save a life if you know them. Hang in there and learn what you can. Dr Curry told me he had many patients but I have one be the advocate it will make a difference.

Sue

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