Hep C Discussion Forum

Good news Duane.  Keep up your positive attitude.  Sure like your picture with that little cutie-pie.  Now there's something to be happy about!

Super news that the ablation area is clear.  Very glad to hear that Duane. 

Congrats Duane! I believe your liver will slowly return to a normalized state and you will have many years to enjoy that little Angel!

Hey D,

Thanks for sharing your good, no great update! Stay positive, you've taught us all what that word means and continue to serve as the example of what being strong requires. You're always in our prayers Duane...

Tig

Duane,  Stay strong! Sending you positive thoughts and prayers!  Ro

Hey Duane

When I read your posts, I realize that your strength and attitude is something I admire.  I'll be saying some prayers for you. Stay strong...your an inspiration for folks you don't even know!

Thoughts and good vibes going your way.

Sandy

Preliminary MRI results are in, ablation in Sept.was successful, impression: moderate acities , severe portal hypertension, splenomegaly, multiple dysplastic nodules  in the right lobe......however as far as the HCC is concerned there is no change to that ablated area, and nothing lit up in the scan in that area, the other lesion is still there, but little has changed still just under 1cm. The dictated report will probably have to circulate thru the whole team including oncologist before being posted. So that sounds like good news to me.....I guess :/

Labs however showed increased total billy and reduced albumin, platelets at 43 and INR at 1.9 creatinine at 1.0, both white and red blood cts were low 4.3 and 4.05 respectively but AST and ALT were both in normal levels.

So I guess it is just business as usual until March.

Duane 

Thanks everyone I really appreciate the thoughts and prayers,  I'm really not the whiny type, but man this thing is beatin the crap outta me.

I wanna quit working,  but I don't wanna quit working, and then I see how totally lost I am in things that rolled off my tongue in the past, it's  rattled my confidence, and then just never being able to experience fun anymore is deflating.

Anyway enough........ thanks again everyone.

Hey D,

I'm sorry you're having such a hard time right now. I hope you know that any one of us would gladly take some of your pain, some of the load, if only we could. I'm going to send you the best and strongest vibes I can muster and pray that you can somehow gain a bit of strength, and the confidence that we are trying to send your way. If prayer will help, and I believe it will, let a special prayer chain begin for you here and now... Stay strong and believe Duane, He and We have got your back!

Tig    

Dzdayscomin wrote:

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.... but I think there is something else bad going on in there because of how I am feeling.... no fever, just this dull ache and just a general blah feeling and intense muscle and joint pain that is getting worse.

 

 

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   Is the upper right quadrant pain something you were told you might experience after your surgery?  If not your doctor might want to check it out.... Hang in there, I'm sorry you're having a hard time right now.

Thanks.....I know you mean it!

But I'm growing weary....I will just continue to pray for the strength I need, and if that doesn't come I'll just deal with it.

I had Facet injections for my lower back 25 yrs ago and one time in my upper back about 10 yrs ago for a trigger point, otherwise no other joints and didn't have any problems.

I don't care so much about the needles that pain is so insignificant it doesn't matter ...except the paracentesis needle that one is a little bit more challenging.

I really don't want anything more for pain I just want the whole effing thing to cease...i'm tired of it and it just keeps piling on.

My MELD got raised to 22 it'll be 25 on Dec. 5th and 2 pts every 3 months........ so Transplant is possibly between now and next Dec. 2015 if we make it there.... but I think there is something else bad going on in there because of how I am feeling.... no fever, just this dull ache and just a general blah feeling and intense muscle and joint pain that is getting worse.

Dzdayscomin wrote:

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BTW what are they looking for as far as blood work that I don't already regularly get drawn ? I am getting sick of the constant blood letting.

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Rhematologists are looking for a long list of autoimmune disorders.  Chronic HCV has been linked to autoimmune problems although many people who don't have HCV have autoimmune disorders.

If a specific disorder is identified it can often be treated, but as you say, the risk to the compromised liver has to be considered when drugs are used to tx. The big catch-22.  Still, it is worth the trip to visit the Rhematologist just to find out, since most autoimmune disorder diagnoses can apparently be made or ruled out by blood work.  

I hate being poked and prodded too and I can't even imagine what you have had to endure.  

They would have to stick me so many times in so many places that I really don't see that happening, besides we all know that steroid injections are only temporary. But these days maybe temporary is long enough?

BTW what are they looking for as far as blood work that I don't already regularly get drawn ? I am getting sick of the constant blood letting.

Well its been a month since the HCC Ablation and not feeling to bad but not great either, i have developed some upper right quadrant pain, not horrendous but different and constant which has me a bit worried as to why....but I have my next MRI in a month so we'll find out what that means then, and then 3 days later my yearly upper endo so that'll be fun, but in the mean time this week I see the Rheumatologist to assess the joint pain issues which are increasing in it's severity.....I really don't know what they can do considering about all they do is use medications which will be ruled out due to liver disease, so other than being compliant with my PCP I'm kinda thinking this will be a waste of time?who knows.

Duane

Actually I don't have to work...I could easily retire and file for Disability, I was a wise young man 30 yrs ago that is making me a wiser old man with $ now...so yeah I could do that, but I have found that working and being required to perform, as well as the Co. I work for is almost like family to me so I enjoy being a part of the business and it is vey good for the mind and social well being.

But I will admit I'm getting closer to a point where I like quiet and peace without as much hustle and bustle, so we'll just have to see how this goes in the next couple yrs and take it from there.

If I really felt that the end were nearer I'd surly stop working and just spend time doing whatever forever...

I don't think I'm as sick as the medical world (and my wife lol ) think I am....I can get along just fine as long as I take my meds and don't over do it, I work full time and other than being tired a lot I'm fine. Muscle cramps and joint pain...is a hassle too..

That's what can be so difficult about this disease, is that you can look perfectly fine and then one day bam!! your really sick because the liver finally fails, I really think the liver seems to work harder with less to compensate for the in-efficiency.....I would bet that most people would have no idea i was in the condition I am if they didn't know me before, and only then it would just be the weight loss that would make them think WTH ??

But thanks all the same !

Dzdayscomin wrote:

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 my MELD will jump to 22 and I will receive 3 additional points in Dec. and after each 3 month evaluation, until my scores puts me at the top in our region for type O recipients so doing the math he said it would be about 18 months as 30-35 is the current score required, he did say that there are current deliberations on redistricting our area which would drop that need to the upper 20's but that is still ongoing.

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Either way I'm  pretty happy with life in general, **** happens and we we gotta just play the hand we're dealt, so for those of you that are in good  health other than having HCV stay positive, because there is always someone out there that has it worse than we do.

 

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 So if the redistricting works out, and no portal vein lesions or other lesions disqualify you, you could be looking at a transplant as early as just a few months. And because you have achieved SVR that should help with limiting the new lesion situation, right?

 I know your situation could turn bad, but the odds are that you will get through all this crap with your new body part and do just fine. I'm glad you can look at this with a positive outlook and not ignore possible obstacles and acknowledge those who are in worse shape. My close friend of 26 years died yesterday from cancer. I spent many fun times with him, and then watched his decline over the past few months and that has really given a new attitude about my little HCV deal. I've been pretty strong for his family during all this but after the viewing tomorrow and funeral Friday, I suspect I'll shed a few tears, then move on to the next obstacle, with a little help from my friends.

Hang in here Duane!

wmlj1960 wrote:

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Maybe that astray plan will continue on to show you that all the Sx crap, life interferences and waiting were to provide you with increased gratitude for your future SVR.

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I'd be grateful enough yesterday!  I've never bought into all that "suffering is good for the soul" business.  Raised by Agnostics.   

I do think there are lessons to be learned and strength to be gained by adversity, however.  

Hahaha.....I remember that, Mike.  So glad you decided to hang out.    

Ahh...waiting....When I was first diagnosed my plan was to get through tx ASAP and not let HCV interfere with my life.....The best laid plans of mice and men often go astray.

So I got a call today saying that the remeasure of the tumor revealed it was 2.1cm and that it will be discussed in next Monday's conf. with all parties from the transplant center, my liver doc, the IR docs, hepatologist etc.. as to weather I will qualify for the exception points, I guess the review of not just the size but, also the the fact I have attained SVR and the fact that my liver function was much improved will all be factored in.

I guess it takes longer than I thought to get all their info together to best present my case for this, and I would suppose that it is only fair to others that may have never had HCC  and have high calculated MELD scores are in worse shape than I.

So we will continue to wait and just see what happens....I'd be totally fine if my liver were to progress to compensated and better and not get a transplant, but I'd  rather have it when I am in as good a shape as possible to insure the best outcome......as im sure would those waiting with say a calculated MELD of 30 to get theirs before they deteriorate any further.

 L

Lots of waiting in this waiting list game......

Duane

Ok ok I get it stop the drubbing ...lol

I guy can over research I guess.....I'll  just leave it at that to prevent a thrashing..!

Dzdayscomin wrote:

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Not to be a downer Duane but this read was not very encouraging on HCC reocurrence and rRFA prognosis....

http://onlinelibrary.wiley.com/doi/10.1002/lt.23605/full

Think I'll  read a comic book

 

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Ok, I'm just going to smack you right in your noggin, because you are thinking about the worst possible outcome. The study you cited is not on point because it is discussing the outcomes for people who have repeated recurrences of HCC post operatively and whose viral etiology was predominantly HBV. This study was not focused on HCV patients or HCV patients who had attained SVR.  This is a significant distinction and I'm sure there are others. Furthermore, you may not even have a recurrence.

Reading small esoteric studies will not give you an accurate picture because they only include a tiny piece of a very large puzzle that contains many ongoing variables.  

Both you and Mike are, in all likelihood, going to live long enough to become dirty old men.    Accept it.   

wmlj1960 wrote:

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 I'm not very good at researching like you are so the only information I've been able to find has always said no. But I've been searching for a couple of hours and found hope in question 3 on THIS PAGE.

I would think that if I can acheive SVR then based on my compliance example so far, I would be a possible candidate for doing this. I don't want to get any empty hopes going but if this out to be true, then it will be very very good news!!!

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Exactly, Mike.  It isn't false hope because it is a real medical possibility.  It is also noteworthy that the discussion from the liver conference you cited to took place in 2006 and so much as changed for the better since then.  At that time they were seeing few decompensated patients who could even hope to achieve SVR.  Their livers, therefore, didn't stand much of a chance even if they stopped drinking.  

I interpret those comments by the Hepatologists to mean that alcohol, and perhaps HCV, could cause acute decompensation, but it could be reversible if the assault on the liver was eradicated, and that is consistent with some other things I have read at various times.

I'm not certain of this, but I think Duane's Meld score decreased post-tx, and his liver was showing signs of improvement.  Of course the HCC changed things again, but on the upside, it also placed him in a better position to receive a new liver.  

Anything can happen but there is no reason to assume things will only get worse.  Don't underestimate the positive changes that can occur, as the result of your commitment to sobriety and healthy living, as well as to achieving SVR.  While I am not one to believe that positive thinking will say, cure disease, I sincerely believe that positive actions can change the course of one's future.  Just keep up the good work and continue to hope for the best.