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Post Info TOPIC: Liver Transplant


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Liver Transplant
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Further, Canuck, the cat in the previous avatar wasn't taller than Lucy, she just had better posture. :}

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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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Same doggie, Canuck, different cat. Lucy was raised with cats and has great respect for them. She seeks out strange cats we encounter with an offer to bump noses, but has learned not to push the issue. Cats! This pic was of a strange cat encounter. It would take several more confrontations before these particular noses were bumped. Lucy is patient (and persistent ... she IS a terrier).

Speaking of tomatoes ... when we were still living way off in the country, my neighbor was an 82 year old man with a PhD in Anatomy. I was living with cirrhosis and HCV and Henry had a portable oxygen tank. When Henry started planting fruit and shade trees all over his property, all surrounded with proper cages to keep the deer out, I pointed out the folly of an 82 year old planting trees. I got the same look Boxers partner must have gotten when he confronted her with "why so many plants". Obviously, we were going to need a lot of fruit and shade going forward.

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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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I think it is a good thing to share thinking, knowledge, experience and perspective. It can only help (all of us)!

Boxers, your partner wondered why so many tomato plants?! Silly man, do you really have to explain that you simply need them and intend on eating a lot of them! wink (men!) Sigh.

SS, Are those the same two animals of yours that were in your old avatar? Not the 3 hear/see/speak no evil avatar, but the prior avatar, the one where the cat and dog were side by side and cat appeared huge/taller than your dog?? Ha! Just look who's bigger now! heehee 

I love it when people have their loving furry critters of comfort around them, special beings, aside from our amazing human buddies who support and sustain us through thick and thin. wink C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Wow, Boxers. What a decision. I feel like such a sheep, just got in line and did what I was told. Now that I think about it, you were probably dealing with an "at risk" liver that is usually offered to people in immediate need. Mine was so simple. I got the call while in a restaurant parking lot. My coordinator asked about my health, whether I had any infections, then said they had a possible liver for me. I live 15 minutes from the hospital so I went right over. I was only told that they were waiting for the liver, and I was originally in the #2 postion, but the #1 guy couldn't get to the hospital in time, so it would be me. Then the doc came in and said the liver was no good and he declined it. He said he wouldn't put it in his father, so he wouldn't put it in me. Like having a dutiful son for a surgeon. But.... he said there was a second liver available. I was only told it was a local cardio patient on life support and it could take a while. It took another 8 hours, but, just about midnight, about 13 hours after I got the call, I was wheeled into the OR. Four days later I was home in my own bed, a new liver chugging away.

I'd like to say the waiting is the hardest part, but ... you know. Like you, I felt fine while on the list. I had a TACE that arrested the tumor growth and my liver was fully compensated. We had moved to the city and had accepted an offer on the farm. Life was lining up just great. Nothing to do but wait for the MELD points and wait for the call. No tomatoes that year, but we did have some chard growing in a pot we could move around our itty bitty yard to get some sun. But there was the invasive, overwhelming, huge elephant iin the room. And all the uncertainty that comes with it. The unknown. Unknown financial drains. Strange plans for unanticipated outomes. I wasn't depressed, but I was on the brink. I think there was a grieving process involved for my old life. I was living a way different life. I wasn't sure what to do but learn to live in a strange city and wait.

Now the waiting is over and it seems there's life ahead. Sheesh, what a gift. Thank you, masked man.

There's a lot of work ahead, Boxers, but hang in there. Its a helluva sytem and for the great majority of us, it works.



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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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Thanks Alison, no particular type of tomato but I planted beef steak and cherry tomatoes. I told my husband he will have to take care of them if and when I have surgery..haha, he looks at me like, why so many? I too love the smell and taste of vine ripened tomatoes or anything for that matter. My sister suffers from depression from minimal sunshine in the winter but she got smart and bought a place in Florida, clearly she got the brains in the family...lol. I have such deep roots here with all my animals and doctors, I doubt I will ever be able to move to the sunshine state. I agree, something told me to wait or I just wasn't ready for surgery. I hope this man's gift was able to help someone.

 



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65 yo female

dx. 1996

TX with interferon/riba 2001..failed

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 



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Hi Tig, thanks for your concern. I am hoping with a change in weather my spirits will pick up or I am just in denial. Many years ago my doc put me on a temp. RX. of antidepressant for another use (can't remember what it was) but I had a bad reaction to it. I have always been very sensitive to medications (maybe my liver). I do feel better when I get with the program, just got to push myself.



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65 yo female

dx. 1996

TX with interferon/riba 2001..failed

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 



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Canuck, the phone call is kind of like a screening call to assess if this is an organ I would be interested in, I guess there isn't any point in pursuing me if the medical/social history is something I am not comfortable with. They did say it was a match (blood type wise). They also told me about the disease testing that had been done, in this case he tested positive for Hep. B but they were not sure if it was a positive as in active or a carrier and of course HIV exposure which can test false negative if a recent exposure. Time is a factor of course, he must have been on life support since it didn't seem extremely urgent and he is 3000 miles away. If I remember correctly, in the initial meeting with the transplant team they said the quality of the organ goes down the longer they are on life support. If I had said yes, I would still have to fly to Seattle and go thru more testing for compatibility, size etc. I guess with his long history of IV drug use and jail time, I felt too many unknowns. Not to mention, shock! I do believe everything happens for a reason and at my age I don't know if I could go thru this twice (guess I would if I had to). I have reconnected with RC, what a great resource. Will keep you posted on any changes. What a wild ride!

 



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

Tig


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Hi Boxers,

Depression can be so debilitating. I had episodes of it, especially when I was on treatment the first time. I know the feeling of not wanting to get involved in life, avoiding contact with anyone and feeling the only friend I had was my bed and darkness. If I can offer some advice, please talk to your doctor about this. if it takes another pill to quell all of this, do it. I was amazed at how fast my depression improved once I started an anti depressant. Your depression is related to your medical problems right now. If you can get some help controlling it, you’ll see things with an improved viewpoint. I believe it will also help you with your decision making processes. Don’t be afraid to ask for help. It’s so important right now.

You got this girl, go after it!  



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hm, aside from your experience with this (the phone call) ... maybe RC or SS knows about this ... I am wondering what kinds of things they can tell you about the donor, so as to even be able to enable you to make a good decision, on the phone, in a split second??!! Do they actually say, "decide, right now! You got 30 seconds (or 5 min or whatever) while I'm on the phone with you, or we will move on to the next person on the wait-list, as soon as i hang up"?? 

So, obviously, like they "advised" RC, he was told it was a "good match" when he had to make his decision, (and in your case they must have divulged the donors drug use hx), so they do try to tell you "something", for you to base your deliberations on, on whether to say yes or no - but how extensive can they go with info, (to be helpful to you) in sharing all your donors "positives and negatives" during a phonecall?? 

Maybe call one of team back (I wouldn't know which one) to ask how much they can divulge and what the time limits are to decide? (Maybe you already know the answers to this that I bring up) but, if not, if it is not clear, then it might be any idea to have that chat with them, explore the rules of engagement so to speak, how these things usually "'go down", so that the next time you get this jolting phone call, you might have a list of questions ready for them, that might help you decide just a "tiny bit easier", whether the next one will be a yes or no, and feel comfortable in that decision, after the fact. I realize they too are on a time-crunch, but perhaps they do have a wee bit longer time limit for you to decide or consult with hubby, or just catch your breath (off the phone) and then be able to call them right back shortly with an answer? Maybe talk to them about what "specific" things may constitute an ideal, appropriate, or so-so donor for you. Do they already know (when they phone you) whether the donor has HIV or hep c. I know donor size matters, and so does donor liver health, surely you do not even get a call unless they already have a pretty good idea the donor liver is viable and it would be of the right size for you. Maybe RC or SS know more on these things.

It seems like such an awful high leap to take, stepping off the edge, into a yes, based on a short phone call! Please DO NOT regret the decision you made - (nor past decisons, nor the next, nor any other coming) - you want to minimize risks, maximize best conditions, and feel OK with it - I would agree with the decison you made - it seemed not right for you to go ahead with this one. You and hubby and everyone here only want to see your very best chances are in place, for such an investment, and for you to be able to relialize that the decsion you make, feels right and will the best one for you.

I am of the mind (obviously) that it cannot hurt to see if chatting with them further about all of this (info and rules, about the the next phone call), and, letting them know the degree of depression you feel you have been working with, it might end up being of some kind of assistance to you? I'm not saying to accept "pills" per say, they are no doubt somewhat aware of the torture people go through, waiting, enduring all this entails, they if anyone know being able to vent with them or with anyone might be useful, if it isn't to you, well then at least it should be useful to them to know, as they should be kept apprized that you are struggling, so they can acknowledge this and see if they can assist in any way - ya never know - it's not always about pills.

I am glad for the further report on how you are "holding your own" on all other fronts. That is very good and positive (your labs and all). Ya, spring fever!, (I loved your tomato story) - my sister gets severe winter doldrums (big time), 3 times she has driven to her "cabin" (in the snow) to (hopefully) plants peas too early - "desperately hopeful" is another way to look at her! Spring cannot come too soon I say! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Depression sucks. Sorry you have been experiencing that, boxers. Getting in the garden is so beneficial, its great that you are starting your tomatoes, do you have a favourite strain that you grow? I love love love fresh off the vine tomatoes...even the smell of them is delicious.

 

Getting that call and making a snap decision like that must be rather surreal but Im glad you listen to your intuition. Another liver will come along for you (soon I hope)

Im glad you posted.

Ill be thinking of you and sending positive energies to you

Alison

 



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 



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Thank you for your concern Canuck. I got "the call" today. RC is correct, it is surreal when they tell you who they are and start talking transplant donor. I turned down the offer due to his past and possibly present drug use and risky life style. I really didn't think about my answer any longer than a few minutes, before I hung up. I told my husband after the phone call what had happened. He laughed thinking I was bull%#%ing him. Of course he was shocked when he realized it was for real.  As I told RC, I feel ungrateful to be offered such a gift but I don't think I could go through any surprise complications that could be avoided. Fortunately most of my labs are exceptional and if it weren't for the HCC and fatigue I wouldn't even feel like I was sick. My stent (TIPS) is working well and haven't had any issues with Encephalopathy for a year. No ascites, I think I better knock on wood after saying all of that. I get an MRI later this month to evaluate the liver tumor. I appreciate everyone on this site, thought about posting many times but was very depressed, new experience for me. Just wanted to sleep. Thought about seeing the doc about it but that would require another pill so I just dealt with it. Winter may have played a part in this blah feeling also. The one sunny day we had, I racked the yard until I had blisters. I was so optimistic about spring, now I have ~50 tomato plants in my house. Well that is my update, I will definitely post changes. Hope everyone is tolerating the fight and kicking its butt.

 



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 



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Boxers,

Oh so glad you wrote! Been fretting and wondering what has been happening with you. Very relieved and pleased to hear from you. I am so sorry about the plight and everything and how you are feeling. RC is right, this is difficult (at best) to go through, it would be normal to react in ways of anxiety, fear and depression when faced with everything you are! He is also right in pointing out the positive ultimate outcome, being at home with a new healthy liver in future - that is what is going to hold and sustain you while you wait. There WILL come a day, when this is all in the past, and you will think back on how brave, and strong, and smart you were to make and accept your best choices.

So, I applaude you for declining based on negatives - what were the donor's negatives, if I can ask? When suddenly faced with that decision, I am sure I could not have made up my mind on my own, i bet I would have had to think it out, out loud, with my partner - how long do they give you to decide??

Please come here often, as often as you please, if it helps, that what this place is all about. Very happy RC replied quickly back to you. Hope our thoughts give you some comfort, and/or food for thought. It's been a long hard winter, but spring is arriving, and with it I hope better luck and hope, (and soon) rejoicing for you, once they get this ball rolling for you. smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi Debra, My call cought me completely off guard. No time to think about it.They told me the donor liver was a good match and I said yes. Its a big decision and your head needs to be clear when you do get the call. You will get a second call soon and I hope your offer is a good one you can accept. I think your depression is normal considering what your facing. Being away from your home for a few weeks is worth spending the rest of your life at home with family and friends and pets.  Thanks for the update!!   RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Sorry I haven't touched base for awhile but I am sure I have been and am in a depression. Anyway, got my first call today and after hearing the risk factors of the potential donor I said no. I am not sure but pretty sure most of my decision is based on fear. I have to get over the fear and anxiety of being away from home for so long. Falling apart in side...ugh!

 



-- Edited by boxers on Friday 13th of April 2018 07:55:13 PM

__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

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