Mikesimon's Thread

[mikesimon]

I have been coming here 4 years or so and I don't think I've ever started a thread. But, since I am going through this little drama and so many of you seem interested I thought it would be better to have a place where you can find out what's going on with me. To summarize my situation: I have a transplanted liver I got in June 2000. Recently I have had significant reduction in my FK dose whic ic my primary anti rejection drug. My enzymes started an upward trend aqbout 1 month ago and htis past Friday I had a biopsy. Monday I and my transplant surgeon and a liver pathologist will review the biopsy slides and decide how to treat. It sure looks like rejection and if it is there are 3 possible treatments. 1) FK dose adjustment 2) some kind of mild steroid treatment 3) an intravenous injection of a gram of steroid named Solumedrol(they call this a "blast"). This last option flattens the immune response thereby halting the cellular rejection immediately. I had 2 or 3 of these right after transplantation. Blasts shock the liver and the pancreas and I suspect that my diabetes can partially be attributed to the blasts. So my insulin requirements will increase significantly for a week or so and then hopefully settle down. Well, that's it and I want to thank all of you again for being there. Mike

[willing]

welcome back to the recurrent nightmare (everybody on the bench get up and scoot over a bit). I'm sure there's deep disappointment, but from my ignorant perspective HCV resurgence looks like downright good news relative to rejection. Is the HCV titer you quoted (UND at 30iu) from serum? Your post makes it sound as  if the in-house RT-PCR they ran on the biopsy tissue detected HVR RNA in cells through the serum test was und but I wasn't certain whether I read it correctly. I hope you are encouraged by his words about VX. Hopefully you'll be able to stay at the reduced dosage ifn/rbv if the goal is maintenance. Have you thought about whether alinia might be an alternative? I have to confess there's a  lot about your post I don't understand. Elevated ALTs are definitely triggered by the immune response to HCV (stellate cells etc.) so that lowering the FK in the presence of virus explains that result, but what was/is keeping serum VL UND in the presence of FK-reduced immune response? Anyway, all the best.

[mikesimon]

I jsut got back from my meeting with my transplant surgeon Paulo. The biopsy shows:

Chronic Hepatitis Viral Type C with mild activity and mild to moderate Portal Fibrosis.
Fibrosis Stage 2 out of 6.
HCV Titer of <30 IU/ml or <1.48 Log IU/ml
Modified Hepatitis Activity Index: 2+0+1+2 = 5 out of 18

Apparently the lowered FK dose allowed my immune sytem to attack the virus and thus the elevation in my enzymes. As long as I was on my regular FK dose there was no elevation. He said that he sees this frequently where the virus is undetectable in the serum but found in the liver. The test used was an in-house quantitative real-time RT-PCR assy. I am starting on 90 mcg. Pegasys per week, 200 mg. ribavirin per day and 2 mg. FK per day. He wants weekly labs, to see me in 1 month and a biopsy in 6 months. He wasn't worried at all and when I asked him if he thought I should be happy with the results (that is's not rejection) he said "yes, I think you shoud be". Paulo is straight to the point and never candy-coats anything so I have to feel relieved. I just hate going back on that poison again but I love my liver and want to take care of it. Paulo is extremely enthusiastic about Vertex-950 and thinks that may be the drug to change the HCV landscape dramatically and hopefully the liver architecture as well. He also said my liver feels normal - nice and soft. It was a very nice visit if one can have a nice visit when one's liver is the topic of conversation.
Thanks again for all your support. It's TX again!!!!!!!!!!!!!!!
Mike

[willing]

yeah, it was last week. I was arguing with the nurse about the needle's gauge and about drawing at least 20mm of tissue (she was insisting 5mm was sufficient)  then she just smiled and injected more anesthetic into my iv line and the conversation kind of fizzled out.. All this discussion about assertiveness training for patients is fine, but they've got a few tricks up their sleeve too, like making you shuffle around with your pants off. Anyway, I should hear back in a bit. I hope your remodeling/septic work's going well.

In case you didn't see it, I posted a note to you and FLguy in the 5/30 thread started by DoubleDose on peg-intron vs pegasys about a recent study that reported an unprecedented 69% SVR rate for relapsers - I'd be curious to hear your thoughts.

[FlGuy]

I hope these episodes get fewer and farther between each other.  In reading your posts over the months I get, probably on a samll level, the vigigence that you need to live with ever day and I admire you for what you go through every day. Hope this passes quickly for you - it must be all consuming.

[Bill1954]

Just wondering; you had mentioned in a previous thread that a biopsy was in order...where do you stand with that? From your comment above, it sounds like the deed has been done, and I'm curious about results.

Bill

[willing]

Mike - well it's about time you started a thread! sheesh some people...always waiting for someone else to do the heavy lifting... Good luck tomorrow ( and inquiring are wondering why they wouldn't monitor for signs of rejection on every prograf reduction ?)

Bill - good point about the resistance to insertion/retraction. If you ask someone who does a lot of those, their impression might be informative. Wish I'd thought of asking..

[amirtracy]

dammit mike you made me cry w/ that post to susan...
waiting along w/ you. let us know as soon as you can.   t.

[TravelGrl]

Mike,

Please stay strong my very dear friend..you are a huge survivor and this will just be like you said...a small bump in the road.. You are in mine and Amanda's prayers daily.. Please stay well.

I will be thinking of you tomorrow and hope you have  a good meeting with the Dr. and pathologist....please drop me a line with an update..

Love,
Jodi

[nolee]

Well man, your made SVR and now your new fuel filter is giving you trouble? That really sux. I don't know you but have read many of your comments which really helpled me get thru this crappy way to cure one's self (2b, 400,000, SVR 3 years this coming August). You know probably better than most to do what I did and what it looks like you are doing is find the BEST medical team you can find and follow their directions to the "t". 4 years before rejection is slightly common but pretty rare. I think you and your team are on the right track and just need to adjust meds, etc. kinda like a tune-up. Your gonna be fine man I feel it in  my heart. Anyone that can slay the dragon can conquer darned near anything so I have very positive feelings about you gettin this most recent issue solved. Keep a stiff upper lip and post some more so we'll know how your'e doing. I am having alot of post tx sx's I'm dealing with but aint about to give up. Let us know how your'e feeling and God's Speed. Neal

[Pharaoh]

Hi, Mike

I lurk on here to keep an eye on you, especially after that motorcycle crash. :) My dentist had nearly the identical wreck -- an old woman pulled out in front of him and stopped.  He laid the bike down, but broke his leg and his collar bone.  He'll never get on another one, either.  

Sorry to hear about your latest problem, but this too will pass.  Sounds like, whatever is causing it, you caught it early enough.  Good luck and godspeed.

GT

[DebbieDo]

Hello Mike  :)
I read a post somewhere else this morning and i was glad to see a post from you.  Probably don't remember me, i have been lurking about as long as you have.  I pray that you will have "excellent" liver biospy results tomorrow.  I will be praying from you.  Hello to everyone who knows me...........I'm doing great.
          Deb

[mikesimon]

Mine was a cadaver liver - 40 year old donor. If I can offer a little advice Susan, I wouldn't immediately close the door on your sister's offer if it comes to that. Let the experts examine her and determine whether she would be a suitable donor and allow them to assess the risk to her. Sometimes when a person has the opportunity to bless you with such a gift they really set their minds to getting as healthy as they can. My sister, who has always battled a weight problem, got in the best shape of her life in case everything else fell through. I didn't acquiesce to her being a donor either but she decided on her own to get prepared. After transplant I asked her for a hand getting out of a chair and she almost threw me across the room she was so strong. I asked her what she ahd been doing and she confessed that she'd been going to a gym and watching her diet in case I needed a piece of her liver. She truly blossomed. And I also believe it can be the most unselfish act one can do when they allow another to sacrifice for them. Just a thought Susan - I know you have probably heard all this and thought it out - but think again.
It's almost worth having this little drama because it brought out so many old friends. I won't again make the mistake of trying to name you all but you know who you are. I feel so very fortunate and blessed to have so much support from new members and some really old timers like me. Where did the time go? Thanks everyone and don't worry too much. I'll be fine. Mike

[MajNeni]

Hi, Mike,
I got tipped off to look here... Lordy, Lordy, Mike, you do things in a big way, Friend.  You helped me enormously over the years, especially through my tx; I was one of the lucky ones, my last round.  You gave me enormous encouragement, and lots of good info and advice.  I hope my holding you in the Light now contributes to all your friends doing likewise, so that you can bounce back soon, so I can just cajole you about rowdy biking and helmets and SMOKING... a lot of people love you and need you.  Our turn to vigil with you, bro.  Thanks for keeping folks posted.
Maj Neni

[beamishboy]

what can i say/repeat? this too shall pass..i hope that All goes well...GoodLuck friend.

[lilmoma]

Thank you for starting that thread, it did make it easier for me to follow. I am easily confused these days, and I am afraid sometimes I may mix-up one persons story for another. I am sorry if I ever did that to you.
I am sooooo sorry you have to go through so much, I am also shocked, cuz you dont complain. You are such an upbeat person, I really admire that about you. Now I doublby admire you, your plate is so full, and your feeling guilty we might feel bad for you. My sunday school class WILL have you on their prayer list, your on mine as well.
I pray everything goes as you hope.
Keep us updated,....all the time.
lilmoma

[kennedge]

my friend

you are a tuff one. i have the best thoughts and wishes going your way.

ken

ps stay off the scooter

[cquest]

Sorry to hear about your troubles dude...I will keep my fingers crossed for you. Here I sit feeling crappy and wishing my body was normal again when I should really be happy things aren't worse now shouldn't I?
Cin

[mikesimon]

I may be an eternal optimist but I don't think my situation is such a big deal. Of course I am concerned, but once the biopsy was done it was a great relief. The people I see are not overly concerned and they seem to believe I'll be back on track soon. I think I will be too. I don't mean to suggest that I haven't been pretty wound up about this but I am the kind of guy that need direction and immediate action. Once we got started I felt pretty relaxed and confident about things. So, while I really appreciate more than I can express the concern from you guys, I fell a little guilty becasue I am not really in that bad shape or in that dangerous territory - at least I sure hope I'm not. You guys are really great.  Mike

[mikesimon]

The doctor who did the biopsy said my liver seemed normal. I don't ever ask techs any questions because I was put into a tailspin once by a tech who didn't know what she was talking about - this was during a sonogram. That was about all he said and I wasn't asking. But, if I am in a mild rejection I wouldn't think that the gross architecture would indicate anything at all. We'll see it on the cellular level. Mike

[Pdilly]

I have not talked to you much but you seem to be one strong person.  You always seem positive even in such a precarious situation.  We will pray for you and with your attitude .... you have to be just fine.  Keep us informed.

[dog_lover]

Four years ... wow!  I'll bet you have witnessed and experienced a lot of fear, pain and triumph.  I'm sure you have considered what your words must mean to one of our brothers or sisters who just discovered that they are members of our club.  I think I have been posting now for about three or four weeks and I have received so much more than I have given on these pages I can only imagine how many people you have helped in those four years.  That sounds cliche but cliche's are born of fact.  I, for one would like to thank you for being there for all those people who have just found out they won a big lottery with an uncertain prize.
Take Care with Respect, Dog_Lover

[cuteus]

I have no doubts that Super lucky, resilient, Mikesimon is out to win another challenge!
It does not sound like easy to take treatments, but I believe that you will do whatever you have to  because life is so precious for you, and the survivor always finds a way.
try to have a good weekend and you have access to many friends' numbers, if you need to talk.

[giddyup]

Mike your strong positive attitude is a source of strength for me.I truly hope your days will be healthy and happy. Giddyup

[Snookmiester]

Ha, ha!!!! I was gonna tell you to stay off the motorcycle, but Kenedge already has that covered!!
Stopped by and just wanted to wish you the best. I know that nobody can say anything to put you at ease, as the waiting is ALWAYS the worst part.. i seem to believe from your comments and previous posts that you have the situation under control, and have the utmost respect and confidence in your medical team, so your one up on the situation.. Now, get your mind outta the gutter, and do something special this weekend. Take the wife out to a really nice restaurant, or treat yourself to something you normally wouldn't buy.. I know that usually makes me feel better! You can feel bad next month when the bill comes!! LOL