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Author Topic: Liver Transplant  (Read 1751 times)

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Offline Anne A

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Liver Transplant
« on: February 11, 2018, 08:04:29 pm »
Well the time has come to make a decision about getting a liver transplant. I wanted to talk to anyone who has had one and exactly what to expect. So far I've heard just from the doctors. Not one single person that's done it. Please someone help me decide, that's IF I get all the requirements beforehand which I almost have them. The money for the pills is an issue as 10% of the high prices is a lot. I need to apply to some places that will pick that up. All the other tests, except the pulmonary-had a lung infection which may zero the whole deal out. Had the Y-90  for the first two small tumors but when I went back for the one very small one my liver enzymes were sky high-too much stress on the liver to do another. Now it's abration(sp) burning with a needle.The doctor said "some people do good and some do not". Any help ?
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Liver Transplant
« Reply #1 on: February 12, 2018, 04:01:35 am »
Hi Anne

Not sure if anyone here has undergone a transplant. I had a friend on another forum who tragically passed away from an unfortunate accident about a year and a half ago. He has much loved and respected on that forum. We shared with him, his battle with hep c, liver cirrhosis, liver cancer and finally his successful transplant. I can sent you a link to his profile on the other forum so you can read his many posts.

Here is a post of his I found I will let him speak for himself:

HectorSF Interview on another forum

I have been asked to post my own story with hepatitis and liver disease. I will try to make this brief as there have been so many ups and downs over the last number of years and tons of experiences as does everyone dealing with with HCV and liver disease.

I was infected as best as I can figure to HCV & HBC about 40 years ago. In May 2007 found out I had a low platelet count while preparing for an unrelated minor surgery. This was the first time ever that my blood levels were abnormal. Meaning my platelet count was below 100,000. Then I had a biopsy performed which confirmed that I had cirrhosis. Throw in portal hypertension and mild varices while you’re at it. ;-)

I then tried Hep C treatment in May of 2008 with peg-IFN & RBV but was a null-responder and my platelet count dropped to under 20,000. So I stopped. This is when I first started working with both my current Gastro and my great hepatologist at the local Liver Transplant Center. I still was compensated and felt fine.

In the Summer of 2009 I developed a very rare cancer in my foot. No one had ever seen it before. My doctor had only read about the few hundred cases ever recorded. But luckily I lucked out and had a great Orthopedic cancer surgeon who cut all the cancer out of the bottom of my foot. My foot was like new just 6 months post surgery and to this day….BUT the anesthesia from the surgery had caused my cirrhosis to decompensate. I had really terrible ascites, couldn't breathe or eat because there was no more room in my abdomen. Feet and lower legs bloated and did even look like a part of me. Then I started have hepatic encephalopathy. One day I was at the hospital as usual and was lost. I didn't know where I was or why. Really scary. Since decompensating I have been taking all the usual drugs for the complications of cirrhosis. Diuretics, lactulose, Xifaxan, Nadolol, etc. Once the right dosages got dialed in I felt so much better.

I became unable to work any longer, as just getting to work felt like climbing Mt. Everest. Horrible fatigue, couldn't remember what I was doing, if I had done something or not, could sleep as my body clock was off from the HE. My MELD score at the time was only 18-19 so there was no way I was going to get a transplant anytime soon. I was kinda hoping my liver would fail so I could get a transplant and start feeling better and stop being disabled. Well in two years my wish came true in a way that I was unprepared for.

In May of 2011 I had an MRI as the last test I need to join a special study to try the new protease inhibitors even though I was decompensated. Well on June 1st I received a phone message from my hepatologist. She never calls me we always communicate via email. I knew something was wrong but was afraid to guess what it could be. We connect up later that day. After saying "Hi, what has you calling me?" She said I had liver cancer after finding a 1.4 cm tumor in my left lobe. Needless to say I was in shock. I made it through the call being logical and asking about what this means and what is next. After I hung up I starting crying and felt like nothing mattered any more. Pay my bills? Why? I’ll be dead soon anyway. So I was in shock on and off for a month or two before picking myself back up and saying I will carry on as best I can no matter what happens.

I had to wait 6 months for my tumor to grow to 2.0 cm so I could be my MELD exception points. That was a very scary time. Who else waits for their tumor to grow??? !It felt crazy but I know that was my only chance, as I would never get a transplant here in Northern California where you have to have a MELD score of at least 34 to even hope to get a transplant. My doctor told me if I didn't wait for the tumor to grow chances would be very high that the cancer would kill me before ever getting close to a transplant. Sobering, but I new she was right.

So on December 12, 2011 after my tumor had grown to 2.4 cm I had a TACE-DEB (Doxorubicin) procedure. A month later an MRI showed the tumor to be completely obliterated. 100% gone! I was really to celebrate...just one thing...they also found another tumor in my right lobe. Can't a guy get a break? I guess not. So they setup another $64k TACE-DEB procedure for Feb 22. I thought I knew what to expect since I had already done one treatment. Wrong. The first procedure was easy I was awake the whole time and watched it all on the monitors along with the doctors as they inserted the various catheters and moved right into my liver and next to the ugly tumor and its feeding arteries. After the procedure I stayed up all night in my hospital bed and watched music videos on my laptop and drank ice cold cranberry juice and ate cherry popsicles. And of course all the while I am floating on a cloud of morphine.

(I thought this was gonna be brief!) Ok. Ok here we go...

So for TACE-DEB #2 I walk in the OR and see it is all the same team that worked on my first tumor. I thanked them for killing my first tumor and said "let do it again”. Then the surgeon asked if he could talk to me. "Sure" I said. He said they may not be able to get to this tumor because of an abnormality I have in the structure of my arteries. I told him to do your best, whatever you have to do. Just don't kill me, please. He laughed. So there I was getting preped and before they even cut my femoral artery. Wham, I am out like a light.
Later on I do remember someone coming close to my ear and saying they got the tumor though. When I woke up I was in more pain then I had ever experienced. I thought kidney stones could be bad. This was about 4x as bad. I was hoping to pass out. I couldn’t stand it. Usually I am mild mannered but I was begging my nurse to give me something, anything! She gave me a few shots of morphine. It may as will have been water. Nothing! Didn't touch the pain. I was writhing around like a mad man in pain. It was so excruciating. Finally they hooked me up to those morphine pumps that beeps every 10 minutes so you can get another dose. I kept hitting the button until I was semi-conscious but I could still hear it go off so I would lift my hand and punched the button again until I passed out. The next morning I wake up and I am being strangled by the oxygen line which is on my left side behind me and all of the IVs on my right. (Can you tell I hated my nurse and will never, ever have her "take care" (abuse me) again? NEVER!). One last lovely experience was when the nurse says "well you have to get really to leave now". I can't even sit up and you want me to walk? She say "get your clothes on now". So I go to the side of the bed it takes me 20 minutes just to take of the hospital gown. Then I try to put my leg in my pants. Splat I am down on the floor naked and can't get up. Great. What next? Well of course my nurse it no where to be found. Finally another nurse comes by and asks what I am doing. I say "I'm searching for spare change!" “What do you think I'm doing”? “Nurse Ratched asked me to get dress 'cause I have to leave”. “I told her I could do it, but she ignored me.” Anyway I finally escaped from "the asylum" (i.e. recovery room) and it took about two weeks to recover from the procedure. Dilaudid got me through the pain.

A month later and I learned that my 2nd tumor had been totally obliterated too. YES! What a great Interventional Radiology team I have.

I am now tumor free for the first time since last June and loving it!!!

I go back for my next 3 month MRI is June.

After that I should have about 6 months to wait for my transplant as I will have a MELD score of 34 in December and 37 in March of 2013.
So I think I am gonna make it. I had my doubts before. But the closer I get to transplant the less time there is for my cancer to get out of control and kill me.

I know I am one of the lucky ones. I have to close friends that both had MELD scores over 40 before there got there life saving transplants. And what they went through makes my problems look minor. I visit pre and post transplant patients at the transplant center on a regular basis so my now I have meet probably between 100 - 200 liver transplant patients.
I am also a volunteer Ambassador for the California Transplant Donor Network (CTDN) and sign up donors and speak to various groups about the need for donors so we can relieve some of the horrible suffering and deaths that happen because the waits are so long.

So that is part of my story anyway.
HectorSF 2012
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

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Re: Liver Transplant
« Reply #2 on: February 12, 2018, 04:17:25 am »
This was written before he received his transplant November 16, 2013 by then we all were afraid he wasn’t going to make it his cancer had returned and had no transplant coming. Suddenly he disappeared from the forum and we all thought the worst but were relieved to hear he had received his transplant and was back posting words of encouragement to all of us and also announcing his great news.

His doctors successfully treated his hep c. He achieved SVR 12 in February 2015.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

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Re: Liver Transplant
« Reply #3 on: February 12, 2018, 04:30:29 am »
These were his first posts after his transplant 11/16/2013

Thank you for all of your support!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am doing very well post-transplant and came home on Thursday afternoon.
My sister is here from Connecticut taking care of me as I go through the recovery process. She has worked in healthcare for many decades and so is able to communicate with all of the doctors and nurses. I am taking multiple walks outside everyday and learning all of the medicines.

I am so grateful to have been been given a brand new lease on life thanks to the generosity of a 36 year old woman who donated her liver and all the people at my transplant center who worked tirelessly for me over many years.

Howie <3
Nov 23, 2013


and

UPDATE:

I have been making amazing progress. All the doctors have been amazed by my turn around. My transplant meds have been reduced to the level that it usually takes 2 months to do in only 2 weeks! I can now walk without a walker and a lot of the bruising on my arms and neck is fading. Soon my 54 surgical staples will be removed.

I had a setback last Monday when I had severe pain in the area of my belly button. It was caused by having a hernia that was a complication of my cirrhosis that was now strangled due to the changed volume of my abdomen after my transplant. I had surgery Monday afternoon when a large amount of bowel sac and some collateral veins were surgically removed. The remaining healthy tissue was then pushed back into my abdomen and the abdominal wall was then sewed together in 3 layers and a new belly button was created by one of the young surgeons. The only apparent issues now are related to pain coming from my hernia incision and my transplant incision. Since I have had the good fortune of reducing my immunosuppressants I am experiencing more pain than patients usually have. So I am now on scheduled narcotic pain relief to prevent "breakthrough" pain when pain gets to be uncontrollable.

The bottom line is I am recovering more quickly than most liver transplant patients do. And for that I am very grateful. I am learning to live with abdominal pain as best I can. Hopefully my recovery will continue and soon the pain will only be a memory.

I feel like one of the luckiest people in the world at this point. Compared to where I was only a month ago I have come a tremendous distance. The liver that I received seems to be an uncanny match for me. It is as if this liver was meant for me somehow. I am forever grateful to my donor. She was only 36 years old and had a wonderfully healthy liver that started working as soon as it was infused with my circulating blood. Lucky me.

XOXO
Howie
Nov 30, 2013


Hope this helps you
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Anne A

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Re: Liver Transplant
« Reply #4 on: February 12, 2018, 05:19:56 pm »
Thank you Lynn for letting me read this -Hector sure sounded like a great person. Especially liked his humor on the floor"looking for spare change" Ha. He went through hell as far as I could tell and felt his pain describing his feelings. It's so confusing. I'm not "on the list", several more tests. Thurs. they took 2 and a half liters of fluid off my abdomen, I was so uncomfortable like Hector said, can't breath or eat. Since then I've been in bed with no energy at all. Wish I could talk to people post transplant, from what little I have heard it's depressing. Want to stay positive and grateful but the flip side is I was so energetic before I wonder what's the use.Keep thinking "have faith in what will be". Hope you never have to go through any of these things. You are an angel to help people on this forum.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline andrew j

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Re: Liver Transplant
« Reply #5 on: February 12, 2018, 06:37:19 pm »
Hi Anne,

There is a blogger on this forum (go to Blogs section) ... her name is Karen Hoyt.
I think she is part of a support group for people considering / going through the process of transplantation.

Hoping that she can be of some assistance.

Best wishes,
A.


Offline Anne A

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Re: Liver Transplant
« Reply #6 on: February 12, 2018, 07:54:42 pm »
Yeah, didn't know there was a blog section, hope I can find it, not very good at computer stuff. Thank you for sending this -I'm about to lose my mind over the whole turmoil -can't sleep. Hope someone is willing to give their thoughts.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Liver Transplant
« Reply #7 on: February 12, 2018, 08:02:24 pm »
Here is a link for Karen

https://www.hepmag.com/blogger/karen-hoyt

I know a couple of post transplant folks they are all happy to be alive and in good health but transplant can be a challenging process for a period of time afterwards. My doctors have told me the better health you are in before transplant helps with recovery so trying to be at proper weight and as good of cardiovascular health as possible is the best you can do for your part to prepare.

Getting some walking in as tolerated and allowed by your doctor can really help with recovery post transplant.
« Last Edit: February 12, 2018, 08:14:48 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Anne A

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Re: Liver Transplant
« Reply #8 on: February 12, 2018, 08:53:26 pm »
Thanks (again) Lynn and A for Karen's blog-I wouldn't have found it but did. After reading her caregiver story I see why my doctor said I need more than I have. No family , friends are working, one available but not 3 as required. We would have to move closer to the hospital for two or three months. Not looking too promising at the moment. And the meds!!! Well, the more I learn the better. Thanks you all.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Liver Transplant
« Reply #9 on: February 12, 2018, 10:39:45 pm »
Here is a link to HectorSF profile if you are interested and would like to read some of his many posts.

https://www.medhelp.org/personal_pages/user/446474?personal_page_id=321077

Even though he was very sick he was still working to answer other peoples questions and offer reassurances about their situations even while his own health was failing. He also has some posts about his own situation.

Basically his posts are his legacy. How he is remembered by the many people he helped along the way including myself.

Is there a liver transplant support group associated with your liver transplant center? That might be a way to speak to someone who has had the procedure.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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