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Post Info TOPIC: What are folks' long term plans post-treatment?


Guru

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RE: What are folks' long term plans post-treatment?
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Hey, Good for you (well actually good for me, good for everybody!) that you have delved into this. VERY good to know these things!

And, you went steps further. I am impressed with your efforts and digging. Appreciate you doing so.

I let it slide, and did not make anything like YOUR good efforts! But these ARE important things to be aware of, especially important things for folk to know who are living with livers that have not been compensating well for some time.

I for one am glad you ARE mobile and proactive. Thank you. Please do keep us posted on this, and everything else too!

Oh I'm too old and sick and tired to fight, I'll just take what I'm served up, crawl away, and "go home and die"!! LOL, but OMG! that IS what can happen!

Keep up the excellent work!smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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)



Member

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Hi again folks, so I've done more research about age cut-offs for liver transplants and discovered that only about half the centers have them.  The remainder do not.  So, I guess I'm not going back to Mayo but will start thinking about another institution.  I know I'm not an immediate candidate but I like having a backup plan.  

I do have a call into the Boston district office of HHS but I'm not holding my breath waiting for a response.  I've contacted the American Liver Foundation too, and asked them to address the issue in their policy/philosophy section.  Talked to a civil rights lawyer who thought the ADA might apply.  Read some law review articles that dealt with age discrimination for kidney and heart transplants.  So I've been on a mission!  Not sure where I will take it from here but it continues to bother me, even though it probably will not affect me directly.  Not everyone is as mobile and proactive as I am able to be.  I think some folks will just say, oh, I am too old and will go home and die.  

So thanks for listening!  I'll keep you posted

Karen



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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!

Tig


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Hi Karen,

I would start your research with the Department of Health and Human Services, HHS. Dr. Ben Carson was just appointed to that position and things like this should be brought to their attention. The healthcare providers have to be cautious when there is even a whiff of benefits denial based on age and disability. Physical disease is disabling and if you have documented proof of such and care is denied based on age alone, there might be a civil rights violation involved. That's about all the legal opinion I can offer. Here are some links that may provide you with some information.

Discrimination

Health Human Services



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Hi there, 

Glad you see you back here and a post from you again!

No, sorry, off-hand I can't think right off where to start looking for that. If I come up with something, I will put it here.

Good you got the one fibroscan under your belt!

Have some more!

I would be interested to know the kPa number (and had you had fibroscans prior, the comparsions between the kPa numbers). Going forward, at least you will have this one now as a "baseline". I would want a fibroscan every 6 months as well as that ultrasound they give you every 6 months. What kind of schedule did you say they have you on for the repeat MRI or CATS?

As you mentioned prior, your bloods are good, you feel good, you are treating yourslef well, and are compensating well, your cirrhosis level may not matter in the long run. You liver may well last you out fine.

Do you get to see the scans/imaging, read the actual radiologists interpretation reports/including his impressions, that compare your liver condition from all your past and current ultrasounds/MRI's or CAT's? That might be reassurring for you, to see things are remaining stable.

Without me searching for your prior history, did you have any pre-treatment splenic problems/acities/varices, which resolved after treatment? If you did, prior, and they are better now, then these things would be huge good improvements! If you never had those, then beter yet! Were your bili's and AFP tests ever high, before or after? If all your bloods are good now, as you say, and your cirrhosis is stable (not increasing), and no bad chnages have been seen to your ultrasounds/MRI's, then I would hazard a guess things are pretty good and stable for you. Many things/signs would have to seen to be (long and drastically) falling apart before I would be worrying unduly about having to ever be transpalnted.

What are some of the Fscores they have given you in past or present, and which blood-test based calcualations, have they been using for you then, to help "measure" your cirrhosis and come up with Fscores?

I too would be interested to know more about what the transplant 'rules" are tho. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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)



Member

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Well, thanks for your responses!  I have only ever had one fibroscan and that was this year  I don't recall the numbers but it indicated continuing cirrhosis.  I also had a MRI a few weeks ago which indicated the same.  So... no major regression yet.

I have learned something which really disturbs me, however.  There is an age cut off for cadaver liver transplants.  In most hospitals it is 70 but can be as high as 75 in some centers.  This does not appear to be related to medical issues.  It is strictly a philosophy that younger people benefit for a longer time from a transplant.  

I think this may be the sort of policy forbidden by the Age Discrimination Act of 1975.  I'm trying to find out more.  Anybody aware of possible resources or information?



__________________

GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!



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Hi Karen, 

Congrats on wiping out your HCV.

I think you are very wise, to be making sure you are in the very best hands when it comes to your health care - whether that be a family doctor, a dentist, or a hepatologist, it is very important.

You being attentive to your potential needs, thinking ahead, being pro-active, good planning will only be helpful to you.

If you do end up re-locating in the future, you will have a heads up as to where you will find good hep docs/facilities to keep following you up.

You are HCV free, compensating well, feeling good, treating yourself right, with no overt indications that your liver will ever fail you now, and you still have room to see if your liver becomes less hard. You say you get ultrasounds every 6 months, which is great, but what do they show? You say "little, if any" liver softening has been detected thus far (based on your fibroscans) - what kPa's have you been running at pre-treatment and post. Do you get the fibroscans (as well as the U/S's) every 6 months?? Do you get Cat scans as well - all three (fibroscans/U/S's and Cats, as well as labs) would be best to follow (on a frequent/consistent basis) over the long-term, to look for/detect improvements and changes, I would guess.

Small improvements in liver hardness, and/or the severity of cirrhosis, may at best be hard to detect (with great certainty), even with using all the available "tests". When combined, they all form just good guessing. Your learned hep doc as well forms an important part of guessing how well your liver is likely doing.

I would be bouyed by what you have accomplished thus far, your liver may now be able to serve you perfectly well for the rest of your days on this planet. But I commend your wise "thinking ahead" to ensure you get the best possible following for all matters of your liver and health.

Perhaps liver regeneration has an inverse time lag in comparison/in relation to just how old we are, how long we were cirrhotic, what degree of cirrhosis we had, and for how long we had it prior to clearing oursleves of the virus. You may see some more liver elasticity yet. Just based on the face value of what you relay here, i would not guess you would be a transplant candidate.

I know how important it is to be well positioned, that is exactly what people need to do nowadays to get the best health care they can. You have to be pro-active nowadays. I did the same seeking, maneuvering, and positoning just to be able to get myself into my drug trial. I also travel far from home just to be followed by the best hep guy I could find.

Nice to hear how you are doing, yours is a good news story that will benefit others to know about, I hope you post some more. smile C.

 



-- Edited by Canuck on Thursday 2nd of February 2017 05:50:34 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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)



Moderator

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Hi Karen.

 The first part of your story sounds similar to mine: Cirrhotic but "well compensated" with excellent lab results (drawn yesterday), achieved SVR a year ago (Harvoni, after Sov/riba relapse in 2014), still do CT scan or MRI every 6 months (2 weeks ago), feel great and am very active.

 I am fairly confident my liver will last a while as long as I continue to take care of it with healthy diet, hydration and exercise, but I know the time may come for transplant ahead of my preferred schedule lol, and if so I feel confident in the transplant facility that currently cares for me (and has from day 1). I have a sister who lives in Ocala Florida who speaks very highly of the care she receives at UF medical center in Gainsville. I could possibly be moving back there in the future and, if so, will possibly seek my new healthcare at UF.

 But for now I'm taking it one day at a time. If I do get on a transplant list, I will first need to get sick enough to qualify. I'm doing my best to flunk that test with a big fat 'F'. :D

I'm glad you stopped in Karen and I wish you well! smile

  



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hi Karen,

It's nice to hear from you! Thanks for checking in, we always enjoy catching up with our veteran members. There are still a handful of active old timers (I use that term lightly and with a smile), but I do notice that there are still people logging in to see what's going on. We welcome the visits!

I'm happy to hear that you're doing well. Sorry about the lack-luster medical care. We have some good transplant centers here in Florida. Do you have a facility in mind yet? Tampa and Gainesville (UF) have good records. Let us know what you find out. Our Moderator, RC, is in the Seattle area and has been diagnosed with HCC. He is currently going through the workup for his transplant. If you want to send him a PM, he will answer, but he has been busy gettng it set up. He has a fabulous medical team. 

Hope things go well and will look forward to hearing about your journey! Good luck smile



__________________

Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Member

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Hi, haven't posted for a while but I still like to read all the success stories!  I achieved SVR back in 2013 after a Bristol Myers clinical trial.  I'm 72 now, and have a cirrhotic liver.  My blood tests have been great and I feel very well, do a lot of exercising and get an ultrasound every six months.  So far there does not seem to be much, if any, improvement in liver elasticity, but as they say, I am "well compensated".

I've recently become a little dissatisfied with the hospital I've been going to, and have made an appointment with another clinic quite far away (Florida!) which has a very robust transplant program, unlike my hospital.  I am thinking of switching my care, because my sense is that the new place is more proactive, and if I get worse, it will be easier to apply and receive a transplant.

Is anyone else facing these sorts of issues?  Thinking long term-ish about transplants?  I'd appreciate any thought about it.

 

Karen



__________________

GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!

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