Hep C Discussion Forum

Canuck · Guru

RE: LET'S TALK TRANSPLANT

Canuck · Guru

RC!!! Glad you posted. Miss ya. Keep us posted please. : ) C.

Cheddy · Moderator

RC,

WOW! You've been working hard. Three treatments? Just wow.

I will add that a friend of mine had this procedure, plus pacemaker installation. It's remarkable how much better he feels after only a couple of months. He's getting a lot more oxygen and his heartbeat is strong. I hope the same for you.

It's such great news that you are CURED of HCV. Thanks so much for stopping by and sharing yourself.

Cheddy

Tig · Admin

Hey RC,

It's good to hear from you! I can understand why it's been awhile, considering all the upgrades you've been going through, wow! I'm glad to know you were able to avoid a heart attack by discovering the blockage and having the stent installed. Malcolm found out the hard way, but is also doing much better. The cardiac rehab is rough, but I know after you have the valve replaced, things will go a lot smoother. My sister in law had the same valve replaced and did it similarly, through the groin. She's doing great and had no problems whatsoever.

It's hard to believe it has been two years already since the TP. We all remember sitting around the campfire and sending you positive thoughts! You've been through a lot, but your courage and strength, along with some good doctoring, has brought you through. Speaking of two years, it has been the same amount of time since the hurricane that tore my roof apart and killed my generator. Remember that? That was the same period that you went through all of your excitement. I just got that finished as well. Time flies when you're having fun!

Don't be a stranger old friend. You're missed on a regular basis!

Good luck with the coming revision wink

robertsamx · Guru

Hi All, its been a while!! Beleave it or not its was two years ago today I got the call for my liver transplant, we rushed to to Seattle and the next morning they rolled me into the OR and today im sitting here two years post Livertransplant. 9 days after my L/T my Hep C flailed up and my count went over 100 million and the team put me on VOSEVI, added RIBA at week 8 and extended Vosevi 4 additional weeks for a treatment of 16 weeks. I was the first person to treat with Vosevi post L/T, I got pretty beat up once thy added the RIBA but that did the trick- 3 treatments and a L/T latter and i was cured! Its been a long recovery for me- i always feel worn out and come to find out I have a heart valve that needs replacing and I had a coronary blockage, we did the stent on The artery two weeks ago- no big deal, and Sep 20 I have the aortic valve replaced and then i should feel like I did when I was 50!!! The valve job will be done W/O splitting my chest- they have a new way of doing it through your groin artery and its called a TAVR procedure. they can now replace a heart valve through your leg artery!! Im looking forward to feeling good soon. Hope your all doing well. RC

Lindsmatt52 · Senior Member

RC-I'm so sorry. Seems like you have a lot more bad and ugly than good lately. You have done such a brilliant job of managing this LT so far and it really doesn't seem fair that you have yet another hurdle to overcome. The support you have here is never ending and I hope you find some solace in it. We are all counting down the days with you and hope they pass by quickly for you.

Tig · Admin

I’m with you on that, SS! Riba is evil in oral form. RC, I would take that on for you if I could, seriously. Unfortunately I can’t quite manage that, but I will stand by you until this is over and that day is coming, soon. I figure the last thing you want to do is talk about it, but talk we will. Sometimes that lightens the load (Viral load!), and maybe a little comedy and brotherhood will help pass the time. We can try and if you feel like yelling, we’ll listen to that, too. Whatever it takes...

You have my number, I’m always available my friend!

T-minus 25 and counting!

sailing shoes · Veteran Member

I'm literally speechless, RC. Just when the new liver was reaching some kind of equilibrium with it's new home, here comes Riba! Riba will screw anything and everything up. Hang in there ... just a few more weeks and you'll get to see what a 60 year old man with a shiny new liver is supposed to feel like.

Canuck · Guru

Very bad AND ugly is right (despite the good). I agree, this (the culmination of everything) IS the worst test(s) and times you have had to endure and survive, for sure. None of us would have wanted to be in your shoes, nor have to withstand all you have been through, nor would any of us (I think) been able to do all that has been thrown at you, not in the way you have ... unless of course ... we too had the guts to make the decisions that we wanted to live, to not be sicken by our old failing liver anymore and to live a life free of ca.

We know you already know everything thing there is to know, about this (more than we ever will!), but I can't think of anything else to say to make you feel any better, other than just talking out loud about things. It was a tough situ you were in pre-TP, but I think we all "got" the reasoning of your docs, what seemed like a "toss-up" gambling theory that your pre-TP HCV treatment may well have failed again, your docs would have had very little control of convincing your less than ideal (actually a poor quality sick tumorous liver) to achieve SVR before TP, and in the wisdom to play the best hand (your vosevi card) on your beautiful new liver, stacking the deck so to speak - those factors (vosevi/good liver) racked the odds to your favour, by giving you the very best of livers first. They ARE experts in managing rejection, and in managing in the rej. drugs ... the rej. drugs they CAN work around, but there was only so much they could do with your old liver - your precious vosevi card may have been wasted on your old liver (that may have been a kind of miracle in itself to go SVR with your old liver). Your new equipment gives your docs the tools to "manage" something that they have the ability to manage. It WILL pay-off. I HATE it tho that they wanted the boost of riba - that is such an unfair, horrid state to add to the work you are doing. I am so sorry you are going through riba.

I am only guessing here (retrospectively) but, had it been a "choice", if it had been "possible"/feasible for you to be given vosevi prior to TP, it likely would have been given with riba added anyway, and, given your liver status then, an iffy effort to use only (and use up) the HCV treatment cards back then.

(I'm not really talkin riba here) - but remember, quite a spell ago ... when you and I were just comparing "general" sickness perspective notes?, wondering what "other" people felt like, trying to figure out how we felt? Not knowing what "normal" was anymore, not being able to figure out how sick we were, or how well we should be feeling - if only we just had somebody/something to compare to! - how we wished we had a nickle for everytime we wished we could just slip on somebody else's shoes for a second, or slip into their bodies to walk around and try on what "normal" felt like for a minute? ... you are right, the riba ride IS going to end, you and Chris just got to hang on, minute by minute ... (but I take it back ... what I said above - about how no one would want to be in your shoes) - I think all of us here would gladly, very gladly, slip on your shoes just for a few minutes or a day to try to share/absorb some of the burden and hardness you are forced to feel and battle, I would gladly park myself in your spot for a bit, if I could I would brother, to lessen the blows. You SO deserve some respite and it WILL come, in spades. Hold on. I know your lovely new liver will handle this HCV infection well, it can "take it", and you too are going to take it, you are just that kind of guy, you are strong, you too will tough this out, no matter what it takes - you ARE winning it.

I hope your doc visit this week helps in any way it can. C.

robertsamx · Guru

Treatment post Transplant ? The good-Bad & Ugly!! First the good, Treatment any time is good. Who wants to go through a L/T and then let the HCV virus start destroying our new Liver. After looking at all the trial results (S/X) of Vosevi and Epclusa I would have thought treatment post transplant would be no big deal. And really the first two months were fairly easy, What I mean is that when I started the Vosevi I dident feel any worse off. Which brings me to the Bad. Whats bad is that all the immune suppression drugs knock down your immune system to the point that it cant efficiently kill the HCV virus. In the trials leading to vosevi and Epclusa everyone reached UND in week one or two. No one was on rejection medication, so you could say they all had healthy immune system Able to fight the virus. I was asking for treatment before the transplant and my Dr wanted to wait tell after l/t. Hes the boss and has done so much research on all treatments that naturally I followed his lead. He has treated many post l/ts and knows what hes talking about. The only thing I wish I would have known about is the fact that post L/T my immune system would be so severely compromised from alll the rejection meds, had I known that I would have fought harder for pr-transplant treatmen,and beleave me its not like I dident try to get treated first! And now the UGLY. Like I said, the first 56 days of treatment were fairly easy compared to the last month on treatment. Adding the RIBA at week 8-9 has changed the whole ballgame and made things miserable and ugly. The first two treatments with riba were tough enough even with PEG, but adding Riba to the transplant recovery and transplant meds is ugly. I have never felt this bad ever. At times its just minute to minute, then there are stretches that are bearable and I know I will get through it. Just 25 more days and its going to get better! Its a UGLY time in my life right now, I have never felt more beaten down. What a emotional ride! I dont know whats right or wrong when it comes to pre or post treatment, but looking back I wish I would have treated (attained SVR)before transplant. IMO if you can get treatment before the transplant- DO IT FIRST. RC

Tig · Admin

Hi SS,

Thanks for sharing your story. It amazes me to hear about the process you went through. It’s a valuable lesson to have the shared knowledge from you and RC. Having the differences in TP dates provides some interesting comparisons. You‘ve both shown us how that “walk is walked”. Continued good luck... smile

Canuck · Guru

Thanks SS. The more info one can hear/read, the more we can learn or consider. I've tried to do a fair bit of reading on various things, but it is golden to hear it from real life.

"Fit" and installation and priority recipient selection were easier things to find discussions about - all the science behind the assessments/pre-testing/ genetics and tissue matchings was not.

Yes, one of my questions too!, about mixing genotypes and what GT you end up being! - I heard recount once, of a fellows story, he became fulminatingly ill, no way out, except experimental treatment, they put him in a coma, wiping him and his store out completely, they then gave him donor stuff to rebuild him and his new blood, he became another totally dif blood type in the end, survived AND thrived in the end, but was a gruelling story his journey. Until I heard his story, I had not really consdered that he (or anyone) could end up being a totally different blood type!!

I hear ya, about your "former" life and the interferon days, to cure a failing body and survive, then, being a different gruelling time in comparision to now, BUT I consider ALL of what you and RC have accomplished (to date) to be monumental, as I do others who have done that hard work to reach cure via the old HCV treatments. Big respect.

I can only imagine your night and day differences (the past to now), and I really appreciate your thinking about it being a gift, affirmation of life, positive! There is nothing better than to have than perspective, the opportunity of time to gain perspective! (and life).

I like hearing how "amazed" you are, biggrin (and grateful). I think it is safe to say, that all of us here too are amazed and grateful you and RC (and others) have had this incredible opportunity.

I had mind warp when I first discovered how hugely wavering our numbers can go (VL's, enzyme levels!!), had no idea until i started hearing and reading about them.

What a mass of simply amazing systems we are, us humans.

Ya, the "4-in-one-day" scans, how many of these 4 scans are involving dye(s)?? And, I thought (maybe) considering the potenitally differing? contrasts, and possibly being fasting all day (except for the most-likely? necessity of heavily flooding oneself with water all day?), that it might be a bit much as far as orchestrating - but, perhaps only one or two of the scans involve dye??, and maybe they agree with you that all 4 could be done quite OK, in some particular order, one after the other. Is there any pre-imaging bowel prep involved (for the abdominal ones) that you will be required to do at home? If so, that alone may make a 4-in-one-day event feel a little longer. You prolly got it all figured tho, what all is involved and what will be OK and tolerable.

Thnaks for sharing. smile C.

-- Edited by Canuck on Monday 6th of November 2017 02:13:52 AM

sailing shoes · Veteran Member

You know something, Canuck, looking back, every one of those early years of Peg and Ribivirin (and neupogen and procrit) were tougher and harder on me than the transplant and first year out. On treatment, it was a year with all my numbers bouncing along the bottom, and not much chance of success. It was dark and getting darker all the time. Now, my labs are great, and although recovery involves a bit of work and diligence and new accomodations, the trend is all positive and hopeful and grateful and getting better. I was a ghost on treatment. Back then, treatment, for me, was more about avoiding death. Transplant has been an affirmation of life. A gift rather than an ordeal.

I just moved a few months ago and I can't put my hand on the pre-TP files, and they do test for everything. EVERYTHING. 3 days in the hospital from 7AM till 5PM. 39 vials of blood. It's everybody's goal to not waste a donor liver. A lot of the evaluation is looking for factors that will effect the recipient's chances of surviving the surgery and caring for a new liver. And the TP Center, of course, gets its ratings and rankings based on survial numbers. I was very involved with the donor match and genetic markers for success before the transplant, but it was just a statistical abstract once I got the call. I think the main criteria is size. And time. I think they can work with not ideal blood type compatabilities, but it's difficult to squeeze a big'un into a smaller space, and a little one in a big space has plumbing alignment and stability issues. There is nothing securing the new liver in place other than the plumbing and the abdominal cavity. I think, Canuck, with cadaver donor livers, a perfect match is hard to find and they have learned to deal with the issues. It comes down to who needs it now. And who is available. I don't hear much about complete rejection. There are a lot of immuno-supressants available now. It's side affects and a quality of life issue.

When I get my files found and organized, I'll look around for more. Maybe. I looked through my on-line records a bit today. My AST spiked to 3,788 during the transplant, then dropped to 70 five days later, and 14 in two weeks. Helluva liver, eh? Absolutely blows my mind.

I wondered about DNA - Do I have two DNAs in my blood? Would I fool the forensic labs now?

I was very fortunate to have been SVR for almost two years before the TP. I'm very interested in what RC is going through, doing treatment right after the transplant. With neupogen no less.

I woke up yesterday thinking, FOUR SCANS??? In one day??? WTF have I done!!! I think I'll give the imaging nurse a call and see what kind of fool I am.

Canuck · Guru

BIG congrats on your milestones SS!! Graduating (sort-of) from transplant team to the hep team.

What a year for you!, going from 37 a day to (potentially) not even Cellcept now. Soon to be just the tac, once the Bactrium runs out!

I am so glad about your creatinine, you were fretting about that bit weren't you? And, of course with good reason - these drugs you boys are doing are heavy-duty, super-dooper, no-foolin'-around, not-for-sissies stuff.

We have to admire your strength in all you've had to endure to regain a balance and your health.

Hm, zoster DOES present a confusing picture alright.

Poor you, the pin cushion stuff, but, you tranplanters are tough hardened troopers, lab-wise, and in all ways. I (for one) am glad you are getting so many bloods next week. I had to look up CVM, I only had the vaguest conjuring inkling memory of hearing CVM before (stands for "cyto-megalo-virus") to save anybody else looking it up.

I have a question for you please (re: your pre-transplant assessments) - what all do they test for? I assume, but have never yet found a "list" that shows ALL what they test for - do they do ALL the heps (aside from A, B, C), i.e do they do D, E, F and G?? Had they already done CVM's on you before (I would assume so)? They must do a great number of pre-transplant (infectious-type) testings on you guys, so as to reveal any secreted things your body owns or vestiges of, that you may harbour.

I have never understood (beyond size/blood-typing and tissue-typing compatability), what other tissue-testings they do, as far as "good/better/best" genetic matching between donor/recipient. Can you elaborate on any of the kinds of special "gene" testings they do on the donors and recipients? Matches must have a great bearing on the number/amounts and lengths of anti-rejection drugs one may be required to do, no?

Maybe Boxers too will find out some info things she might not have run into before, from you two, as she is following in your footsteps, so to speak.

Now, what in the world are you thinking! ALL that imaging on one day! Good grief. Why? The beauty of having to endure only one poke/one line/one day and a whole trainload of dye? Have-line-will-travel? Only 4 stops? Efficient, I guess, if it all works out in one big day! Man.

Thanks for such good informative reports from you! We can learn so much important stuff from you. smile C.

robertsamx · Guru

Hi SS. What great news all around!! Going from 37 pills a day to just the Tacrolimus. I cant wait until I get there. This news is just what I needed to hear. I am three months into my Transplant and I still get upset stomach. I have something to look forward to.I had a shingles shot about 4 years ago, and have never had a outbreak.Your LFTs look stellar. Stay in touch. RC

-- Edited by robertsamx on Saturday 4th of November 2017 06:54:53 AM

sailing shoes · Veteran Member

I've been studying your nerve graphic, RC. Very interesting. I, too, expect I'll be both numb and sore for the duration, and of course I'm okay with that. But to complicate the matter, I've had recurring shingles for years which has been easily managed with Valtrex - if taken within hours of the first sign of a flare. But my shingles virus lives and travels on a nerve, now presumed severed, that ran across my right upper quadrant. That nerve was damaged and had Post Herpetic Neuropathy before the TP so I am accustomed to stabbing abdominal nerve pain. Doc says the the virus will eventually find a new path, especially with a suppressed immune system. I now get random stabbing pains along the incision that mimics the pain of post herpetic neuropathy, but I've had no shingle rash. Confusing. But I got the shingles vaccine just before the TP, and that, as well as the severed nerve, my be keeping it down.

I just entered my 12th month post TP and had my labs and doctor appointment yesterday. First the labs: Still stellar. AST 19, ALT 20, Cereatinine 1.2, platelets 167, total bilirubin 1.1. Everything is in range and chugging along. Very good to see the creatinine finally behaving.

As to the doctor appointment, I am now, as of last night, completly off CellCept (mycophenolate) !!!!!!!! And I'll stop Bactrium when my Rx runs out this month. I'm still taking tacrolimus, 3 in the AM and 2 in the PM, as well as aspirin, B-12, Co-Q-10, magnesium and calcium. And that's it! Far cry from the 37 pills a day I took at one time. I have to do labs again next week to see if all is well without the cellcept, then monthly labs, see the doc every six months to schedule the .....

.... SCANS. Since my old liver was confirmed positive for HCC I will have scans every six months for two years, then annually till year five to check for recurrence of HCC. The first 2 years are the higher risk for recurrence. I scheduled all the scans for the same day later this month: Ultra Sound of Thyroid, chest CT, abdominal MRI (the hour-in-the-tube kind), and a pelvic MRI. One after the other. I must feel like such a warrior that I can handle anything. Right now, I need a valium to even think about it.

Also a ton of labs next week, HCV quant, HBV and HAV antibodies, AFP, CMV by PCR. I think they're gonna take a lot of vials of blood.

What else? ... well, my next appt will be with Hepatology rather than the Transplant surgery. That concerned me as I have gotten used to having a post-transplant coordinator to guide me through the medical machine. But, I will still have her! I'm told she will still monitor all my labs, scans and test results - and be available.

That's it. Almost one year post and still kickin it. Or starting to kick it again. biggrin

Good luck everyone.

robertsamx · Guru

SS hit on something I want to talk about. Numbness and also no feeling below the incision. I wasnt aware that there would be no feeling below the T/P incision. They may have touched on that before the surgery but im pretty sure I would have remembered that. That should have been right up there on the SX list of transplantation. It doesnt affect my decision to have the TP but it would have been nice to have been informed before hand. We have nerves in the abdomen wall that are cut in order to open up your abdomen to access your liver. The incision looks like a Mercedes Benz emblem. As far as I can tell they cut through three of my nerves on both sides. I have researched this and it doesnt sound like I will ever get the feeling back. On the up side of this, Im diabetic and I cant feel the shots any more!! The nerves cut are T-9 T-10 T-11 on both sides. The pic below shows there location. I bring this up because the surgeons dont talk about it. RC

Tig · Admin

This has turned into a very educational thread. I’m glad we have it and appreciate all the HCC Warriors keeping it going. I see from my admin panel that it is very popular according to page hits. We’ve got a lot of guests looking in!

I’m amazed by the strides in transplantation now. Seems they can transplant just about everything. I read an article recently about the successes in intestinal procedures. Kind of similar to installing spaghetti! If they can get the rejection equation ironed out and easier, there’s no limit, except the brain. I know a few people that could use one... wink

Canuck · Guru

SS,

VERY interesting and informative SS. So glad you two TP guys can compare and share notes. And I am sure Boxers and all of us here appreciate the info and experience.

I was not under the impression that either of you (RC or SS) had had a Tace and then an ablation "a week apart" ... I'll be forced to go back and scroll through all your posts (just to double-check and be sure) ... but I am wondering if (RC) you were speaking of/blending in some of "VetwithC"'s hx, he was just posting here last week about his HCC treatment, and it was just like that (10 days between Tace and RFA). I'm confused now, but that's OK, I'm most often that way! SS, you didn't have ablation at all, did you - you just had the one Tace, right? And RC, you had that first spot Taced, but then they went back in to ablate that same particular spot a month later, right? smile confuse

hm, missed a dose eh SS? Well, just proves it happens, and can happen even to the best of us! Bonus your creatinine happens to be down a tad.

I am appreciating your experienced eye, your "slant" on how things come to be, and occur. From karma, to hard work, to liability in protocol "development" (medicine by lawyers might actually be a bit better than medicine by receptionists).

Very interesting, your lady friend who is participating in the immuno-suppressant cessation trial - hope you are able to keep in touch with her?

You have a clear way of thinking through things, a valuable gift, and, a gift for understatement too - (NOT funny, but I had to giggle a bit at the ways you present things) ... like that bit about feeling like you were going to eviscerate yourself just turning over!, and your view on how it feels to truly BE eviscerated then have it replaced! This is so nice to know, that there are many people walking around out there like you and RC, your lady friend and Basser, who ARE just as tough as nails! wink biggrin C.

sailing shoes · Veteran Member

RC, I think this is how they develop the protocols. One center tries something different, they wait a couple of years, write it up, talk about it, talk to the lawyers ( biggrin ) and voila!, we have a protocol. I think tacrolimus was developed by Dr Starzl at UPMC. They thought it was great stuff and dosed the hell out of each and every recipient till suddenly, everbody's kidneys were failing.

Like you, I was waiting for my MELD points. Six months after the tumor grew to 2.4 cm, my MELD went to 31. Then, just as I was to get the 3 points for longevity the TP Coordianator said I'd be getting calls soon. My first and only call - I would have been back-up, but #1 couldn't make it in time. I got lucky, but hey, that's why I sold the farm and moved to the city. Then, after four hours or so, the TP doc said the liver was no good. He said he wouldn't put it in his father so .... Then just as the doc called UNOS to decline that liver, another liver that fit my size became available. I was already prepped, just had to wait another 8 hours for the logistics to sort out. How's that for karma, eh?

You nailed it, RC. I was 1a and cirrhotic. Had the virus 20 years before I was diagnosed with HCV and cirrhosis and then it was another 15 yrs before Sovaldi/Olysio cured me.My old liver was well compensated and I was planning on a long life with a healing liver. So fortunate to have been undetected for 2 years before the HCC, TACE and TP. How's the combo of treatment sides and immuno-suppressants sides working out for you? Did they start HCV treatment soon after the TP? Whew, hang in there, young man. smile

TACE and RF ischeduled so close together seems strange. No idea what that could be about. Did you have multiple tumors? I used to dig deep into stuff like that. Now I'm very compliant. I do what I'm told and show up when they want me. Whem I met with the hepatologist - right after they found it was HCC and knew where the tumor was, and that a TP was the only treatment - I was of course blown away. Dumbfounded. Then he said I was actually lucky. Statistically, a total tranplant has the best outcome for HCC, the tumor would give me MELD points while my liver was still well compensated and I would avoid ESLD. I just had to wait for the tumor to grow to 2 cm. Then wait six months for the points. So much for early detection, eh? My MELD was 7 at the time, without the tumor points.

I missed my evening dose last week. Found the pills still in the dispenser in the morning. First time I missed in more thab 10 months, other than being 2 hours late one time. I dutifully reported to the Coordinator and had to have blood drawn yesterday to check tacro levels. Came back at 5.3, way low for me, but the TP Coordinator said that was a good level for me now. Whoopee. And the creatinine was down to 1.2 from 1.4. I know a woman here in town, our age, who is 8 years out, and in a research program to take her completely off the immuno-suppressants. SHe's about 8 months without meds now and doing fine. There's hope. The research program wants needs you to be 3 years post TP to qualify.

I know whar you mean about the watermelon, RC. Did you still have drains in when you left the hospitol? My drains were removed just before I left, but there was still some fluid flowing theat they said would br sbsorbed in the body. Part of the watermelon feeling for me was that numbnrss below the incision and tenderness above. Different areas heal at different rates. Are you actually swollen or just feel full? I thought living without a gall bladder would be more noticable - change the metabolism. You know, eat lots of small meals, etc. It's become routine.

My abdomen is still lumpy and tender along the incision. And there are still areas of numbness. And I still have some random stabbing pain. It's grtting better. It's tolerable. It's what being old feels like whe you've had your vicsera removed and replaced. I was super careful about not lifting, hernia awareness. I'm doing more all the time, but doing less is the new normal. The muscle wall will heal, the incision will heal, nerves not so much. Be careful and mindful and patient. My doc once said it would take a year to settle in. He also said to go live your life.

LamontCranston · Senior Member

Pretty amazing that doctors can even think of this procedure. It wasn't that long ago that there were no good options for hepatic failure. My 100% unprofessional guess is that it will take a year for things to settle down.

The really encouraging fact is that livers are tough SOBs and are the only human organ that can regenerate with a little help from a friend. If there is an online transplant support group, there will be at least one person with any particular issue

But if it were me.... I'd call the doc to make sure that there isn't anything to be worried about.

-- Edited by LamontCranston on Tuesday 17th of October 2017 02:56:18 PM

robertsamx · Guru

Morning All. SS I have a question for you. Was your abdomen swollen after the transplant? If so do you know if it was liquid collecting in your abdomen cavity? And if so how long did it take for the swelling to return to normal? I constantly have a full pressing feeling in my abdomen, feels like I swallowed a watermelon. Thanks. RC

robertsamx · Guru

RE: LET'S TALK TRANSPLANT10-12)

Canuck · Guru

RE: LET'S TALK TRANSPLANT

sailing shoes · Veteran Member

RC, I know it takes different doses of immuno-supressants for different metabolisms to maintain the same levels, but my Tacrolimus target levels were higher - 10-12 for the first month or so, then 8-10. I wonder if that's because I was just about completely off prednisone when I left the hospital - I had one day remaining. The TP center's new protocol is the wean you off prednidone asap and maybe keep the tac levels higher to compensate. ?? I think the Tac target will drop to 6 after my one year anniversary next month. And I can't wait.

I'm glad your neutrophils are responding to nupogen. I needed 3 shots a week for awhile just to keep me on treatment. Plus weekly aranesp injections for the red cells. Here's my treatment road:

Dx 1999, biopsy showed early cirrhosis, 1a, low VL ~ 5-6 million, AST and ALT around 2-3X upper normal, doc said 3 years to live. We had quit our jobs 5 years before the diagnosis and moved to a ridge-top farm. We lived off our huge organic garden. I think the good food and stress-free life made the difference and got us through the hard times.

2001 Pegasys/Riba with Nupogen and Arranesp. 48 weeks, partial response.

2002 PegIntron/Riba w same rescue drugs. 12 weeks, insufficient response to continue treatment.

2004 Phase 2 trial with Valopocitabine and pegasys, no ribivirin. 48 weeks, undetected for 46 weeks, then immediate relapse at EOT. Trial was canceled in my last week due to skin rashes in other patients (not me). Trial drug was a protease inhibitor that was not developed beyond phase 2.

2014 Off label treatment with Sovaldi/Olysio before it was approved. 24 weeks and Unde-stinkin-tected!! Whoopee, until ...

12//22/15, elevated AFP, and MRI confirmed HCC. Tumor was 1.6 cm, therefore did not qualify for MELD points. It was located in a bad spot by the vena cava and the hepatic portals. Transplant evaluation and I was accepted on the list just as the tumor grew quickly to 2.4 cm in two months. One TACE procedure while we moved to Pittsburgh to wait. Got my tumor MELD points six months later.

TP after 9 months on the list, at MELD 34.

BTW, I was at the Transplant Hospital this morning for a MOHS surgery on a basal-cell carcinoma. My TP center has a Transplant Dermatology team that screens TP patients on immuno-suppressants. The dermatologist said immuno-suppressed patiens are 65 times more likely to get skin cancers. They have a protcol and a dedicated team of docs for TP patients. I've never used sun screen ... until today. Be aware. I owe it to my donor to stay alive.

robertsamx · Guru

SS, everyone absorbs and metabolize meds differentl. I know a guy thats on 1 mg tac 2X a day, and a guy thats on 4 mg 2X a day. The goal is to get your tac # around 6 to 8. Doesnt matter how many you take just as long as your 6 to 8!!Both these guys are 3 to 6 years post L/T. Your med list seems small for this early in the game! My white count is down because of the Tac and one of the antibiotics, and the Myfortic. My neutrophils really tanked to 0.33 and now after the shot they are at 1.26- better but still low. The neutrophils are your first line of defense, at 0.33 I had no defense. Yes that first month in bed was tough, flat on your back all night, and I really wasent sleeping at all. Just laying there most of the night trying to get comfy.I ended up sitting most of the nights in a overstuffed chair or recliner. Tell me about your treatments (3). You sound like a type3 or 1a?? What and when were you treated?? I need to exercise a bit more. Take care. RC

Lindsmatt52 · Senior Member

RC and SS- I love that you two are able to trade stories and advice! It gives me such a warm and fuzzy feeling! You both seem like such genuinely nice people and I think you'll be great support for each other. And Boxers- how lucky you are to have these gentlemen to help guide you on your journey. SS-I am awed and impressed with your 5 mile daily walks-puts me to shame.

I'm honored to "know" you all!

sailing shoes · Veteran Member

RE: LET'S TALK TRANSPLANTRC

robertsamx · Guru

RE: LET'S TALK TRANSPLANTEverolimIm not sleeping

sailing shoes · Veteran Member

RE: LET'S TALK TRANSPLANT

sailing shoes · Veteran Member

Thanks for the welcome, Canuck and Tig.

When I left the hospital, I was taking 7 mg Tacrolimus twice a day and 1000 mg Cellcept twice a day. i was weaned off Prednisone in the first week. In the first month out, Tacro was reduced to 5 mg b.i.d. (twice a day) and Cellcept stayed at 1000 mg b.i.d.That was enough to keep my Tacro levels between 10 and 11. My kidneys were taking a hit however, and I wasn't sleeping, so at around six months out, the docs decided to replace the Tacro with Everolimus, and reduce Cellcept to 500 mg b.i.d.. This is done very gradually. After a couple of weeks I developed a severe skin rash, the skin was literally falling off my fingers, and we stopped the everolimus and left the tacrolimus dose at 3 mg b.i.d. with a target level of 8. At 10 months out, Tacrolimus was reduced to 3 in the morning and 2 at night. Creatinine levels are still 1.4, the upper end of normal, but I'm finally sleeping better.

I'm now about 6 weeks shy of my my one year anniversary and hope to reduce the Tacro dose a bit more. I worry a bit about kidney damage. Tacro levels are currently around 6.

I've always been a strong advocate for managing my own disease and treatment. I have been going to UPMC for all my tests and treatments since I was first diagnosed in 1999; all my records are in their computers. When I was accepted as a TP candidate in 2016, we immediately moved to Pittsburgh to be available when the call came. A terrific move. We had been living on a very isolated ridge-top farm (2 dogs, 2 cats, 2 horses) for the last 20 years and I was getting too old for all that mowing anyway. It took 5 weeks to find an apartment in PGH, list the farm, and get moved, all while having a TACE procedure at the same time.

I'm sure all TP recipients feel the same bond to their TP Center as I have for UPMC, but these folks are terriific. I love living in the city, a 10 minute bus ride from the hospital. When I got "the call" that a liver was available, my wife and I hopped on a bus.

Jeez, didn't mean to write a whole story here. I guess it feels good to ave an audience, a community of people who understand. I'll be around.

Cinnamon Girl · Guru

Hi RC, just wanted to let you know I`m thinking about you and wish you all the best with these ups and downs. I`ll keep looking in to see you`re doing!

Cinnamon Girl · Guru

Hi Sailor, welcome to the forum!

Thanks so much for sharing your amazing journey with us, very interesting and inspirational! We`re always happy to hear about people`s experiences and success stories. I`m glad you found us and I hope you`ll stay around! Your input is very much appreciated! smile

wendyo · Guru

That is amazing sailor. Too cool we now have another new liver here

Canuck · Guru

Hi sailor,

Welcome here and very glad to meet you! What a journey you have had! All that hard work, to get to your transplant at the end of 2016. (Wow, in for a LT on a Weds and out on a Mon!?)

It is wonderful to hear how well you have mustered through, and how well you are doing!

If I might ask, what have your anti-rejection drug reductions been like over this last 10 months?

I am so impressed how well you are doing, I feel the same as Tig, you put me to shame about daily excercise!

Hope you plan on sticking around with us here on this site, you are and will be a walking encyclopedia of good news info for all of us. Congrats!!!! biggrin C.

sailing shoes · Veteran Member

Thomas Starzl Transplant center

UPMC, Pittsburgh

Tig · Admin

Hi Sailor,

Welcome to the forum! It's our pleasure to welcome you aboard. Thanks so much for the introduction and background information. Congratulations are well deserved, too. First for the SVR and then the successful LT. If I may pry a little, where did you have the LT performed? We've got some excellent facilities in the country now and I like to know whom to talk up whenever the conversation takes us that way. I'm sure from reading you're aware of Swedish Hospital in Seattle, because of our two members (below) that have nothing but good things to say about them.

I enjoy your upbeat attitude and the optimism in your message. I swear, I've read so many comments today about exercise and how much you all are doing each day, it makes me feel guilty! I'm just not doing enough and need a kick in the pants to get moving more often. I'm excited when I can get in a mile or two a couple times a week... I'm just unworthy to be among all of you Titans, lol! Keep it up, I'm pleased you're doing so well and taking your health seriously. Good job!

I know you'll hear from the others in short order. I'm sure they'll have some questions, too. We just got this section going at the suggestion of our most recent LT and fellow moderator, RC. It has really been a great addition to the forum, by bringing this group of warriors together. I hope to hear from you often, please stay in touch and let us know how things are progressing.

I have to agree with you, these stories of success are a blessing. Thanks for sharing your story and thanks to your donor. We should all continue to encourage others to sign up for organ donation, it's such a valuable gift. The gift of life...

sailing shoes · Veteran Member

Hi folks.

It's been a long trip since first diagnosed in 1999. Pegasys/Riba, then PegIntron/Riba, then a phase 2 clinical trial, then Sovaldi/Olysio for 24 weeks, and finally cured. HCC discovered when Alpha Feta Protien was elevated on the one year follow up labs. One TACE, while on the list for 9 months. I now have no virus, no cirrhosis, no tumors ... because I have new liver. It's been chugging away for over 10 months now with minimal problems. Transplanted on a Wednesday and home the following Monday. Recovery is still ongoing, but all lab numbers are steller, everything is in range. There's still abdominal pain and fatigue, but hey, I'm 70! And I walk 5 miles a day, rain or shine.

I'm now taking:

Cellcept, 500 mg twice a day

Tacrolimus, 3 mg AM, 2 mg PM

Bactrium 3X a week

Monthly labs, see the doc every three months, and scans every six months.

And that's about it. What a blessing.

Tig · Admin

Hi RC,

There is nothing bad about having a low AST, it's entirely without consequence. Low is good, it's when we witness an elevation that concern enters the equation. The heart, brain and kidneys produce the enzyme as well. I know people that have had an MI will often develop high AST levels as well. Nothing to worry about there! Your LFT's are looking excellent.

I took two Neupogen injections per week during treatment. How often are you giving them to yourself? It worked pretty fast for me. The levels immediately turned the other way, so you should begin seeing improvements. I didn't have much in the way of side effects from it. I mentioned earlier that I had some aching in the big bones, but it wasn't too uncomfortable.

I'm wondering, if your doctor is in cahoots with Gilead, maybe he/she can ask them to cover the cost of medication and testing??? Even if your insurance covers it, if Gilead would pick up the costs, it's going to save your insurance company some big bucks. That would be a switch wouldn't it, saving the insurance company money, lol! Worth asking anyway!

robertsamx · Guru

Hi Everyone- Had the Nup shot yesterday afternoon around 3 pm. Pretty much uneventful to this point.They had me hang around for 1/2 hour to make sure I dident have a allergic reaction. They have ordered 5 Nup shots, and each day I will get labs and see how my neutrophils are doing. I dont expect just one shot to do it. This morning I go in for blood draw - the usual stuff CBC,CMP, and they want a 6 week V/L test. Most folks on this forum half to fight just to get a V/L done. They wont stop checking mine? Go figure! I think its Gilead wanting to see how its going? I dont know if I mentioned this or not but the Drs in Seattle have extended my treatment by 4 weeks. Im going from 12 weeks to 16 weeks and it sounds like the insurance co is ok with that. I called the specialty pharmacy and they made it sound like the extension was approve. It only took 3 days to get approval for the 12 weeks and just a couple of hours to get the extra 4 weeks tacked on.By the sounds of it, My Dr indicated that the extra 4 weeks was a collaboration of thought between Gilead and Himself. I need the extra time to make up for my low immune system. I would do 24 weeks if they would let me, and dont think I wont ask for it!! With my T/X history this is the last house on the block. This has to work! I should have the numbers back this Friday on the V/L, its been a long time since I have seen UND on any of my test result. Last weeks LFTs looked good, i had a ALT 23 and AST 7. The 7 had a L in front of it indicating it was a low result. Thats a switch from the good old days when it was usually 300+ I will check back in at the end of the day. RC

Canuck · Guru

Boot straps and perspective RC.

Sounds like a good idea in this cool weather, hole-up, curl up with a warm blankie, stay lo, TLC, maintain the status quo

You just killed off about 80-some percent of your population in only this last one week! Take prior load (last week, week 4) of 469, now subtract 382 (varmits that you just killed of this week, week 5) = 87 lonely measley damaged on-the-way out varmits left (barely) standing. At this rate (your kill ratio) may be 54.51 varmits per day, sos I figure 2 more days is plenty of time to wipe out the rest of them - easy pickin's for even the smallest army. The landlord's in town and it's death by eviction! Whatever will you do for the rest of the next 10 weeks or so on Vosevi!

I like the continued telling downward direction (load), not so much the other downward labs! But, you are doing it. The cornicopia of anti-everything is an uncomfortable burden alright, but a necessary one. They have you covered (from ALL angles).

Maybe you will be like hepcat60 (it was nice hear input from this "old"-timer! on hepc2's thread recently) - long hx, but he only had one shot of neupogen to get turned around again. Hang in there, like you are doing. smile C.

robertsamx · Guru

The avatar is the real deal. Its somewhere in Wyoming. I love the serenity it captures.

Lindsmatt52 · Senior Member

Good luck today, RC! Hope it goes without a hitch! Love your train analogy-circling and missing the switch! Hopefully, you'll have the express train for the rest of your ride!

I love your new avatar. Is it a real spot and if so, do you know where it is?

Sending you positive vibes and prayers that today goes smoothly.

robertsamx · Guru

Thanks Girls!! Considering all the meds Im on, if this is as bad as it gets , I will consider myself lucky! Im laying low right now, not going out side. Its been windy and Im not taking any chances with air born viruses,or fungi in the air and all the bacteria floating around. My immune system is practically non existent . My neutrophils are at .018 and low normal is 4.something. Im quoting these numbers out of my head so keep that in mind.Tig-Thanks for your words of encouragement on the neupogen. My T/P Cordinator warned me about the bone and muscle ache. They wanted me to come over to Seattle for a 3 second shot, however Ragdoll worked it out so I can go to the local hospital infusion center and get the shot.Because its my first shot they want to watch me for 30 minuets to make sure I dont have a reaction to the neupogen. (Im just about ready to turn off this G/D auto correct) Im getting the shot today sometime. Its going to be a interesting day!

All these trains heading to SVR. Most of which are non~stop and only a one way ticket is required. Then you have the scenic view trains that half to make all these stops along the way, kind of going around in a big circle, some how missing the spot where they throw the lever to switch tracks. Thats the one Im on, making for a long memorable trip!! RC

Observer · Guru

RC

sorry to hear about the bumps on your path..wish so much it was smoother for you, but Im really glad you have such caring, smart Drs and strong support.

Boxers

thinking about you

A

wendyo · Guru

Keeping RC and Boxers in my prayers!

Tig · Admin

Hey RC,

I had almost 6 months of Neupogen injections 2X week when I was on treatment. Same thing happened, the white count crashed and was placed on home isolation. When that occurs, you’re susceptible to everything, viral and bacterial. You’re wise to be as cautious as possible. The white count (WBC) recovered quickly once I started. I do remember some deep aching in my large bones, primarily my legs and hips, but it was tolerable and didn’t add much discomfort to my already trashed body! Trust me, it’s worth the precaution. If you respond as quickly as I did, hopefully you can avoid a trip back to the Emerald City.

Good luck today, Boxers! I’m so pleased you are getting all of the boxes checked. You’re going to know more about your health than ever before! When this is over, you’ll start with a new slate and a beautiful new liver! The smoke will clear soon enough and you’ll have good view of the track ahead.

When our former Moderator, Matt Chris, started the Harvoni Train thread, little did we know we’d have a train station here. Now we’ve got a Transplant Train and I expect the high rates of success to continue.

robertsamx · Guru

Hi All. Had a week 5 viral load done and Im still detected :( I think its at 87 :( So Dr is adding 4 more weeks of Vosevi That will make my treatment 16 weeks. Im happy about the extension but not so happy about the load count. They say that all the anti rejection meds along with all the antibiotics has my immuno system so suppressed that it cant fight and kill the virus as well. Also the last 10 days or so my white blood cell count and my neutrophils count have tanked, today I find out where I go to start getting nupogen shots. They give me the first one and send me home with shots I self administer. Kinda like the good old Interferon days. The shots stimulates white blood cell manufacturering in your bone marrow. I understand its a little uncomfortable, like the flu and achy joints and muscle. Cant be any worse than Interferon.IM not even going out side right Now because I dont want to catch anything and get sick. I dont have the ability to fight off infection with this low of a white count. When I go for the blood test I where a mask. My last blood test was Saturday and I find out the results this morning. They lowered my rejection meds and took away one antibiotic to try to stop the WBC from dropping.I hope they dont call me back to Seattle for this condition? Thats everything for now. TTUL. RC

robertsamx · Guru

Good morning Boxers and everyone. Thinking about yoiu today Boxers, hope the heart work up goes well. Once you meet Dr A-M you dont forget him. I hope when the time comes you get Dr P to do your surgery. However they are all the best in this field, so you cant go wrong. That Silver Cloud is a nice place to stay, and the restaurant in the hotel (jimmys) is nice. best of luck today. RC

boxers · Veteran Member

Yes I know that Doc...he is a kick! He had me and my husband in stitches everyday. Sorry to hear about the abnormal labs....I have read that it can take up to a full year to get back to normal. At least there is a light at the end of the tunnel. So happy this thread was created smile

boxers

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