Hep C Discussion Forum

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

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.  C.

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.  C.

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