Post liver transplant and new 12 wk triple therapy

[harperbardknits]

Greetings!  my husband had a liver transplant 3 yrs ago and has just started (1/7) the new 12 wk triple therapy.  he is the first post transplant to be prescribed at the centre we have been with thru this entire Journey and with whom we carry the highest regard, respect and confidence!  we know this treatment is fraught with unknowns in regards to clinical data on progress/success...and there is a line up of some pretty substantial and nasty side effects.  however, given that he is gt 1a and that the new liver has already sustained considerable damage (grade 2 stage 4) we are proceeding with the same relentless optimism with which we have from the beginning and the while the main hope/objective is to see him virus free and free to live a health-full life - we also are hopeful that his experience will benefit someone else who has similar perimeters/challenges... given that a mere 4 months ago there was NOT an available treatment that he was deemed able to survive - we are quite grateful for this opportunity.  And if for some reason this is not the 'right' one for him, we understand there is yet another imminent release of a combo without the interferon/ribaviran estimated for September.  

So far his experience has been a couple of low grade temps, tired and achy.  Big guns to watch for apparently are acute anemia (s/s include shortness of breath, extreme fatigue), dehydration, infection.  So far though - he's been able to stay fairly functional.  FYI - he has been amazing thru this entire thing!  He has done absolutely every single thing that can possibly be done with no complaining and a generous, loving and open heart!  His primary desire is that his experience will in some way large or small, help someone else not have as difficult a time as he has - and boy has he!!!  Anything it seems that could go wrong has - and yet still -we remain in a posture of extreme gratitude and hope!  To do otherwise would be miserable I suspect :>

Any helpful, encouraging  or otherwise edifying information is appreciated - tho I ask not to be bombarded with 'scarey' stuff as I have already seen, read and heard about as much of that as I care to be entertained by!  thank you.

Best of the best to all who are dealing with this ferocious virus and we wish good fortune and HEALTH to all who are postured to begin the treatment path!

[nan535]

How funny - 1/7 treatment! Haha. It nice to be able to laugh about it.

It sounds like he's on interferon-sofosuvir and ribavirin. Is that right?
The interferon is hard to deal with but at least it's only for 12 weeks. Anemia could become an issue. It was for my husband. But I'm sure they will follow him closely and treat him accordingly.
Please keep us posted on how he's doing.
Best wishes for a successful outcome.
Nan

[harperbardknits]

Greetings and many thanks for the encouraging post!  We are not familiar with Incivek.  David is currently doing triple therapy w/Sovaldi, INT and Riba...we are @ day 6.  Yesterday he did first set of labs and his WBC has plummeted..so it's going to require the injection to get things 'stimulated'...as we've done 'all that' before, it's at least familiar.  Pre-transplant he had more 'issues' that I can recount - however, beings you've been there, you no doubt have an inkling :>  
So so SO glad to hear that so far your post-labs have shown UND!!  WE will definitely be keeping you in our prayers.  And most definitely God has a Plan...for us all yes?  My David has ever carried the prayer in his heart that thru all this God would see fit to use his experience for the benefit of many - including David! lol...From the beginning of this whole Liver Journey, we have endeavored to maintain a posture of what the Punjabi term "Chardi Kalaah" encompasses:  "to persevere with a relentless optimism - particularly in the face of great adversity -thereby demonstrating the all pervasive Goodness of the Lord and His innate ability to carry us thru all things."  That's a very loose translation - but you get the point :>  God has shown Himself faithlful and compassionate every step of the way - opening impossible looking 'closed doors' and making the way and the navigation of it clear and open.  Not to say it has in any way been 'easy' - far from it!  But the fact that we have been given the opportunities AT ALL is in itself miraculous!  We are continually 'floored' by the presence of a seeming 'bubble of Grace' that has been our refuge and see no reason to doubt at this juncture that this will be similar.  I hesitate to predict outcomes...and yet, we are hopeful in the extreme and know that no matter what - God is with us and His Will is good and right.  It's a journey fraught with no end of opportunies to/for  as you say"  I'm a better man for it"...oh boy howdy!!!  
So! What part of the country are you in?  We are on the westcoast and live on the westmost part of it at the ocean in a small little coast town.  Our medical team has been and still is the good folk @ OHSU.  The team of folks we have had the opportunity to work with have been amazing and we can't begin to express our gratitude on so many levels!  What a trip huh???  This whole experience ... wow.   David and I (Elizabeth aka "Harper") have never - ever - been 'mainstream' medical folk - well haven't been mainstream anything truth be told!  lol...so this has been perhaps a bit more of a shock for us than it may have been for some.... however, I had training/education as an RN though never worked in that capacity as I found while I wanted to be in the field of 'healing and health' - that particular path was unfulfilling....so was at least familiar with much of the lingo/protocols etc....it has stood us in good stead!  David is a fine woodworker/craftsman.  One of his joys to create are beautiful folkharps - which I also play. (hence the name "Harper" :>)  I went on to receive training and certification as a Music Practitioner and have pursued my desire to 'be in the field' thru that venue.  I am also a Fiber Freak :>  I knit both for personal enjoyment and on commission as well as spinning and weaving - in fact, 2013 brought a 'new child' to us in the form of a lovely floor loom (fills up my entire yarn room!)  It's a new aspect for me and I'm enjoying getting to know the ways of it! I also do any 'odd job' that comes along...clean houses etc... David and I have been married 18 years now..and thank God daily for the gift of our relationship!  David has a shop here at the house which is great.  Tho the "shop" itself is a big cavernous metal 'quanset hut" affair that was originally built to house a motor home...but he makes it work - has to do a bucket brigade every rainy season....but again:  we make it work!  While we have been able to make our way, we are 'paycheck to paycheck' folk (both primarily self-employed)and the transplant - well, the whole thing really not just the transplant - has 'wiped us out'.  Again, God has provided in creative ways so we have been able to maintain our home (we rent) and keep up for the most part on our monthly bills...We have the blessing of a strong community of people who are kind and compassionate and have many times shown us those attributes and offered what support they could.  Overall - it's an amazing thing!!!!  I have ever maintained the the 'proof' of any 'blessing' being truly of God (as opposed to man-ufactured :>) is it's innate capacity to affect MANY and ALL.  I know this entire "liver thing' from beginning to present day, has indeed touched many, many lives within our community + and has for sure blessed others in unforeseeable and oft unknown ways...so the evidence of God's Hand has been shown us continually - and though it's not been easy - not by a long shot, we too endeavor as you to "always set a good example for everyone in all ways"!!  Wow!!  I have gone on haven't I?  oops...:>  We send you hearts full of blessing and prayers for your continued health fellow traveler!!!  Harper

[nan535]

Your story is very encouraging as is OrphanedHawks. To hear that you both are cured of this virus is so wonderful. I believe you will remain UND but in case it does return,  know that this has given your liver a much needed break.  The new meds on the horizon are showing  a 90+ cure rate in the trials.
They are interferon free so should you need to go through treatment again, it won't be nearly as difficult according everything I've read and heard.  
So stay positive and know that yes I too believe God has a plan for all of us.

Best wishes for your happy Hep c free life!
Nan

[Bill200]

I'm right there with y'all.  I had a OLT in March of 2011.  HCV came back with a vengeance and I was grade 2 one year later.  A few months after that I started triple (also the first person at my location).  I'm am ... strike that ... was 1B.  Did Incivek for 12 weeks along with INF and Riba.  Stayed on the INF and Riba for 19 months.  For me the hardest part was the Incivek period.  The treatment never got easy but I made it out the other end.  I stopped end of October and had a 1 month and 2 month post VL test.  Both were UND.  That looks positive but obviously more times needs to pass to be sure.

I'm getting my strength back.  After the Hemoglobin got back to normal, man, I felt strong, even when I was tired I felt strong.  

I kind of had the same thoughts about the purpose of it all.  I figured God had a plan for me.  At first I thought it was just for me to be faithful and good but then I figured out I should always set a good example for everyone in all ways.  I thought that was God's plan for me, come through all this with a good attitude and praise his name.  Anyway like the song says grace saw me this far and grace will see me home.  

I hope everyone makes it and it's so good that it appears big pharma is on the edge of beating this thing.  I was going to say "awful thing" but you know the funny thing is - I'm a better man for it.

-David

[harperbardknits]

Thank you fro taking the time to respond and for the totally encouraging report!!!  CONGRATULATIONS on your 'new found freedom" :>  We are very hopeful that David will come to that same place of freedom.  I will pass along your suggestions and encouragement to him as I know it helps so very, very much!  So grateful I came upon this forum...

All good and wonderful things to you and thanks again!!

[harperbardknits]

Thanks so much for your reply Nan - it's always encouraging to remember that there are others on a similar path!!  The "1/7" was merely the start date of the treatment...sorry for the confusion :>  So far he has tolerated this tx - alto he is going over to hospital today for labs as some s/s of low blood counts have become 'worrisome'...last night he got up and was very dizzy - as his counts are habitually low anyway, best to check sooner than later.  We wish your husband (and YOU!) the very best during his upcoming tx and for SUCCESS!!!  It's absolutely amazing that this drug has come on the scene and we have great hope for it's ability to give many a virus free life!  Thanks again and hopefully I will be hearing all kinds of good news from you in the new future!!!

[orphanedhawk]

My transplant was in April 2009 and I successfully did hep C treatment ( with interferon~yuck) from the Fall of 2011- Spring 2012.

Although tx is no picnic it was much easier on me post transplant than before.
My advice is to encourage your husband to keep exercising, walking is great,to drink lots of water and remind himself when things get tough, that it will indeed change.

One last thing~ it is wonderfully liberating to be free of the nasty virus that destroyed my liver !

[nan535]

Welcome to the forum!

If your name had not been on your post I would have thought I wrote it with a few differences. My husband had his transplant a year and a half ago. He too has done everything asked of him with the same grateful spirit. Unfortunately, he too has developed cirrhosis of the new liver.  He will e starting treatment hopefully later this month with Sofosbuvir (Sovaldi) plus ribavirin (not interferon eligible) for 24 weeks. He did triple treatment pre transplant and had to stop after 5 weeks due to severe anemia.  He is also 1a so we don't know if this will be successful but at least it will give his liver a break.
As you mention, the new combo drug will hopefully be a good backup if it fails.
     What treatment is 1/7?
Hope all goes well for both of you. I know how difficult all this is and has been for you.  Staying positive and having hope for success is super important.

Nan