11 Month PCR

[DallasStar_]

Just wanted to drop in & say Hi, not sure if many remember me.
I did 48 weeks of Peg/Riba,Female/43,beginning Viral was 1,300,000 - I finished last June, I just received my 11 month PCR, Lower Detection Limit = 50 IU/ML,
I am Negative, I was a 1A, I dont think I could have ever made it through Tx without all the knowledge & shoulders to cry on here @ Medhelp. I want to Thank all of you who helped me through it. I will never forget all the good times, many of us shared here...

I can finally put this behind me, but I will continue to check in to see how everyone is doing.

Hello to all my old friends, & to all the ones just beginning, remember to come here often, its the best place for comfort.

Oh, & I beat the Leukemia also. Life is Good!!!!

Have a Great weekend.

Dallas

[mikesimon]

Congratulations big time! That is just fantastic that you beat leukemia and hep c. BTW I just received my 9 month Heptimax and it is still undetectable. I expected good news but it's really nice to see it in black and white. Stay well Dallas. Mike

[DallasStar_]

Chevy it is always such a pleasure to see you here, I sure have missed you. Thank you for always being here for me, I was truly blessed to have found such caring people.
I Love You Girl!!
Dallas

mikesimon, If anyone deserves SVR, then its You. You have fought so long & hard, & I am sooooo very Happy for you.
Thank You also, for always being here, I will never forget
You mikesimon, take good care of yourself.
Love, Dallas

[mikesimon]

Thanks for the sweet words. I'll always remember you as well. It's true that I had my struggles but you certainly had yours too and I salute you for your fearless determination. My love to you Dallas, Mike

[LvdByGod!]

hi dallas star!!! of course i remember you...it's so nice hearing this news from you...thank God!!!...truly this is the best news ever to have a clear after a year off tx...and then to top it off the other health miricle...that is awesome...have a great hep free life and a healthy liver reversal...may you never have to think about livers again...sandi

[scruffy]

Could'nt happen to two nicer people. Live like you mean it ok? frank

[nolee]

WOW I've been asking what happened to you for months now. This is great news and makes my day. Just to refresh your memory I'm also from TX and guess what, got my final PCR (2b) and am undetectable and was told that being 2b it should never come back kinda like a spayed cat; can't reproduce itself anymore. My doc did say he read in a study that there is some minor permantnent brain damage possible from the tx so now I know why I'm so CRAZY!!!! Love ya and have a wonderful life and GO MAVS!

[cuteus]

ditto! I was wondering about you! I am so happy you are getting your healthy life back.
You went through a lot with these illnesses and the loss of  a loved one...stay well

[artgal]

Brain damage from the tx -- could you elaborate a bit, please?  Geez, what doesn't tx cause, I wonder? Last night I was almost ready to give up (and I know I am such a baby -- I'm only on day 9) but now brain damage worries???

[Imagine]

I think life in general probably contributes to "minor brain damage" hehe. To general a statement for me. I do know that the disease itself effects the CNS. All the more reason for tx.

[artgal]

You are probably right -- one of the positives about tx is that now I have an excuse for things I used to do before I was even on treatment! You were so helpful the other day when I was distraught about a lack of response from my doctor's office. I just received a call from the np at the virology clinic. They had a team meeting yesterday to discuss my concerns. And guess what -- standing up for what we need can make a difference. She told me they decided (although it was very unusual) that I may call the doctor's gastroenterolgy office (I am treated at the Virology Clinic run by the doc) and at any time I will be able to speak to him or a physician on call. So I am feeling much better and more taken care of by these people (and respected for expressing my concerns).
Are you starting next week? Best wishes to you.

[Docsgold]

Double congratulations.  What wonderful news to hear.  I wish you health and happiness.

[Imagine]

That's great news. You effected a positive result in a stressful situation. You have more strength than you know. It will also help others at your clinic who could have experienced the same situation. WELL DONE!

The program I'm in requires that every ninety days you requalify for funding. So as soon as I get the green light (hopefully in the next few days) I will be starting. I've had to jump through alot of hoops but I'm almost there. Take Care - alan

[Oreos]

Great news!!!!  It must feel awesome to get this behind you.  Congratulations and all the best.

[DH Bill]

Congrats Dallas and Mike!!!!!!

I also received my 1 year SVR this week. Was 1b, 48 weeks. I really needed this news after a bad April. Lost my job, my wifes mother died from gallbladder surgery complications, my dog and closest buddy was ran over and killed in front of me, had to have my gallbladder removed last week then picked up my first cold in 2.5 years and I turned 56.

I start a new job Monday and with an adjustment to my thyroid meds I feel almost 100% again other than being sore from the surgery and a little depressed. Life goes on.

Onward and upward

dh

[layla]

Hi Dallas. Wow that's great news and I am so glad you popped in. I missed you when you left. Take care. LL

Mike, NICE! That is just wonderful to hear. LL

[tina-b]

That is Wonderful!!!!!! I am sooo happy for you! It couldn't have happened to a better person.
TinaB

[DallasStar_]

Thanks everyone, it is so great to see so many familar names, I sure have missed all of you, it has been a long 2 years, but I see alot of us made it through it.

I think about the year I spent on Tx, & looking back, I was fortunate to have Friends like all of you.

Wish I could all of you a Big Hug, since I can't in person, heres one from MY Computer to YOURS...

(((((HUG)))))

Love, Dallas

[mikesimon]

Congratulations on your good news and my sympathy for all the bad stuff that's happened this year. But it sounds like your attitude is positive and you have a new job so maybe things are going to get better. Good luck. Mike

[couchpotato]

Mike, can't tell you how happy I am for you and your family. You guys have been through so much, it is incredible to hear that you are finally putting it all behind you. I am positive it is gone and dead forever, never to return. I'd love to shake your hand and give you a big hug, what a relief for you, to see it in black and white.

Now, can I bend your ear for a minute? Are there any statistics out there regarding HCV and liver transplant patients? Will it ALWAYS return? (well, guess it never left, did it?) Hubby's ALT levels went up a month ago and they suggested testing him again, but thankfully it has gone down so nothing has been set up. If they do test him in the future, and he's positive, and he has this spanking new liver, how soon is treatment necessary? Will it move more rapidly because of the immunosuppressent (?) drugs? Maybe you have some answers, I can't seem to find anything on the web and doc's are 100's of miles away. Thanks Mike, and again, Congratulations....what a Mother's Day present for your wife. THE BEST!

Dallas, Congratulations and good luck in the future.

Mattie

[Tallblonde]

I'm thrilled for both of you.  It's really gratifying to read your good news because both of you have dealt with particularly difficult situations (DallasStar: leukemia/Mike: liver transplant).  If ever there were two people who have earned the right the be free from this dragon, it's you two.

You both have my very best wishes for continued good health!

Susan

[cuteus]

WOW! has it been that long already?  I tell you I can feel as if time stood still and yesterday was 2002.  So many things have happened to all of us since then, but the best one is, we are hcv free!!

dh bill, I am so sorry about your bud,  how awful not to have him jumping all over you in play.
He is waiting for you over the bridge, don't hurry over, though, he will wait.

[mikesimon]

Hi Mattie. I hope this finds you and your husband doing well. In answer to your first question, yes hepatitis c universally recurs post transplant. Like you said, it's in the blood and consequently the disease recurs. I just recently read an article, which unfortunately I can't seem to locate right now, which cited a study in which 17% of the post transplant patients cleared the virus after 48 weeks of treatment. I don't remember how many of those attained SVR. I don't put a lot of stock in that study because I recall that no supplemets were used to combat low WBC and/or RBC and thus a significant number of the patients discontinued tx or had dose reductions. Also the starting maximum ribavirin dose was only 800 mg. and I believe that some of the study participants received a low dose of Peg-Intron. There are differing reports concerning the virulence of the reccurent hepatitis - some indicate the recurrence is generally mild which was not the case for me. Most of the material you'll find on this subject concerns low doses of interferon and/or ribavirin in the post transplant setting largely due to questions about tolerance and/or the risk of rejection. I think it is pretty well established that rejection is not nearly as risky as was formerly believed. Now this is only my opinion so weigh it accordingly: I think that transplant centers are primarily concerned with survival post transplant - I think they want to demonstrate that their patients achieve a 5 year or 7 year etc. survival rate and thus are not as focussed on erradication of the virus as are doctors treating non transplant patients. This is understandable and probably in the bigger scheme sensible. I think that it is likely that immune suppressive drugs mitigate the effectiveness of tx and particularly if steroids are in the drug regimen. Most transplant centers have either stopped using steroids all together or taper them rapidly with the goal of discontinuing them after a period of 3 or 4 months or so. I would probably want to be off any steroids before embarking on a course of tx. Also I imagine that your husband will have his dose of prograf or cyclosporin reduced as time goes by and it would probably be wise to wait until he has achieved a low dose regimen before attempting tx. As I said, tolerance to tx seems to be a bigger problem in the transplant population and that accounts for the high drop out rate and low doses that are often used. I know for a fact that I would never have cleared had I not insisted on full doses and extended tx. Of course, I had to supplement for low RBC with weekly injections or Epogen (Procrit) for most of my tx. I did 1000 mg. ribavirin and 180 mcg. of Pegasys, which is the full recommended dose, for 72 weeks. I haven't seen any studies in which transplant recipients took doses of this magnitude or for this duration and I think that explains, at least in part, the low numbers for clearance. There is also information which indicates that younger cadaver livers (40 years and under) do better than older livers insofar as hepatitis c is concerned. Donor age doesn't seem to matter as much in transplants for other reasons. I don't think anyone can predict how the new liver will be affected by hep c but it's probably very safe to say that recurrence is not anything to panic about and with it you can probably expect an elevation in enzymes. As you may recall I treated 3 times, the first two with low doses. Because of this I was able to coax my doctors to allow me full doses the third time. I don't think they were very optimistic about my chances of SVR but they allowed me to try nonetheless. I really think that my experience may impact their approach to treatment in the post transplant setting and that they may try a more aggressive treatment with their patients. My opinion is that if everything is going well for a hepatitis c transplant patient he or she should try to get rid of the virus as soon as practical and be as aggressive as possible. I would start off at full doses and at least try to stay the course using supplents as needed. But perhaps I was just lucky and am biased by my experience. And I was on this stuff for almost the entire 4 years after transplant. There is no denying that such a lengthy treatment was difficult to endure and it still remains to be seen what the long term effects will be. After nearly 10 months off tx I still have a borderline anemia(hemoglobin of 12.2) which may indicate a residual hemolytic anemia from the interferon assault on my bone marrow. Also I had a pretty low platelet count(26,000 at one point) and it has just now gotten back in the normal range. So tx is challenging in the post liver transplant population to say the least. If I can help you in any way let me know. Good luck Mattie. Mike

[layla]

Hi there and a big congats!!! I am so happy to hear this. I'm sure it is encouraging for new folks to hear of our successes. I hope this new job is a turning point for you. It sound like thinks have been rough. I wish you only the best and much happiness. LL

[Tony-z]

How are you ???

You have my heartfelt Congraduations on you success beating the dragon....

"Yesterday was never here and tomorrow will never be but today is a gift that's why they call it 'present'."


              Godd Bless    //TonyZ

[couchpotato]

Thanks Mike, you are always so helpful to me with all your experience, great of you to share. While I understand the attitude, I don't see the reality behind the transplant society's reasoning concerning treating HCV. Why would they bother transplanting a patient with HCV, knowing that it will reoccur, and then not doing their damnedest to eradicate the virus post transplant? (Mind you, I'm VERY happy they do). Wouldn't it be in their better interest to only transplant persons without the virus? If they are only concerned with numbers? Hubby is genotype 2, guess we have that on our side, time for tx-wise. It amazes me that you were on it for 4 years, you are Superman.

Well, I will not worry about it at this stage, just keep my fingers crossed that everything turns out the way we want it to. Get this first year under our belts, then start sweating and planning...if need be.

Be well Mike
Mattie

[mikesimon]

I can relate to what you are saying. And I am only familiar with my center's approach so perhaps other centers are more aggressively treating. But the literature is sadly lacking if they are, as you have already discovered. Your huband's genotype is a huge plus if treatment is ever recommended so I wouldn't worry either if I were you. The virus recurred very virulently within 2 weeks of my surgery so I really had no other choice. I think the doctors were basically just trying to control it rather than clear it, which may partially explain the low doses. Also, at the time it was almost impossible to distinguish hep c recurrence from acute rejection by looking at the biopsy so they were also trying to see if I responded to tx in order to make a diagnosis. Now I believe they can look at dendritic cell splatters to determine the cause of elevated enzymes so it doesn't have to be such a guessing game. In 2000 the approach was to call it rejection if it was close to transplant and if it was a ways out they'd call it hepatitis. I later learned that even in 2000 they had the dendritic cell information at the research facility at my center but they wouldn't share the information with the clinical side until their study was complete so as not to prejudice the results. While I didn't like learning that I understand why they had to do it that way. Anyway I  hope that nothing I've said has given you reason to worry. I think everything sounds like it is going well and my advice is to celebrate your gift and just try to relax with all this. You've both been through a lot and now it's time to be happy. Mike