Help with ITP and HepC post transplant

[JulieAnn]

My brother got his new liver a couple of years ago.  He's had a lot of ups and downs since then but has been pretty stable in the last few months until a couple of weeks ago.  He was hospitalized because his platelets were dangerously low.  After a bunch of tests and a bone marrow biopsy he was diagnosed with ITP (Idiopathic thrombocytopenic purpura).  One doctor said it was probably in his new liver when he got it, and another said it was basically a side effect of the Hep C.  They are treating it with intravenous immunoglobulin.  It is unknown whether a couple of weeks of treatments will "fix" the problem and put it in remission, or if he's going to have to get these treatments weekly for the rest of his life.

Unfortunately, his liver enzymes are also elevated (they've been up and down a lot this year), and the docs say the Hep C is back and causing the rise in enzymes.  But they also told my brother on Friday that because of the presence of ITP they will not give him Interferon!!!!

I'm so scared for him.  Any information, help or advice would be appreciated.

Thanks,
Julie

[MissyMouse]

Hi Julie,

Welcome to our little corner of the web

We  have 2 transplant recipients here that I know will be able to help you.  Hank is a tremendous fountain of info when it comes to transplant and Robin is following in his footsteps.

I am curious about one thing with your brother though, did they treat his Hep C after he got his new liver?  It's my understanding that transplant patients still have to undergo the Hep C treatment in order to keep it from affecting their new liver and that if they don't Hep C will destroy the liver with a vengence.  If he did treat after his transplant how long did he treat for?  Did he clear the virus?

Mouse

[JulieAnn]

Hi Mouse,
No, they did not treat the Hep C after transplant.  It is my understanding that they don't do that until the patient starts showing signs of the virus again.  I don't know how long is typical after transplant but I got the impression it starts to rear its ugly head again in about 2-3 years.  I'm not sure though so maybe others will reply with better information.  And you're right about it attacking with a vengeance after transplant.  It's my understanding that once it becomes aggressive again, it will usually destroy the new liver in just a few years.

I would think immediately after transplant the focus is on recovery, avoiding rejection and getting the patient as healthy as possible under the circumstances before they hit you with the Hep C drugs.

He tells me he is not on much medication at this stage.  If it's helpful, I'll find out exactly what he's taking and post again.  I know he's on what he calls a low dose of Prograf and a very small dose of Prednisone.  He was on cellcept at one time but he reacted badly to it and is no longer on it. 

It is comforting to get such a quick reply, so thank you!

Julie

[robin]

Hi Julie...welcome to the forum and I am truly sorry that you are here because your brother is having problems but I also want to pat you on the back for being such a great sister to him.

I can't help you with the ITP as I'm not familiar with it but we do have a member here who has been such a great support for me, prior to and since my transplant this year. You can read some of his posts in the Liver Transplant Section and in fact, he left his e-mail under my post "I wrote my donor letter" or something like that. You can enter the info in the serach and then find Hank's post. Sorry that I am so round about here but I'm not computer savvy.

With the Hep C and post transplant, I understand all the confusion you are feeling right now. I attempted treatment before transplant but was already too decompensated to complete, though I did clear at week 12 of treatment. Initially they told me that I could treat the full 48 weeks one year, post-op. Nov 22 will be my one year anniversary date.

My transplant surgeon said that it is pretty much 99.9% sure that the new liver will be infected but that most people will make it to about year 10 before there is damage that is significant. He said that about 30% will have damage at one year that would make treating the hepatitis necessary, early. My viral load is now 16 million, down from 26 million 3 months ago. My AST is in the 60-80 range and ALT running in the low 100's.

I've had to stop my myfortic (Cellcept) because my white count was staying too low. They also decreased my steroids because my viral load went from 6 million to 26 million in 3 months. It's been discussed that I'll have another biopsy at my anniversary date to determine if and what the damage is and at that time they will determine if they will start treatment now or wait. I didn't tolerate the Prograf so was switched to cyclosporin (Gengraf).

I'd be glad to share whatever I can with you. I gave Missy the OK to give you my e-mail addy if you want to write. I wish the best for your brother. Keep your spirits high...robin

[hanklive39]

Hi JulieAnn!

God bless you my dear!!!!

I too have been very blessed with having a sister like yourself who really cares about her brother, and let me tell you from your brother's perspective and my own, both of you deserve a very special place in heaven for being so wonderful, and supportive to your brothers!!! There's nothing better than having an advocate like a sister besides one's own mother if they're still around!!!

I also had that condition after a few years (don't remember exactly which year, and I apologize for that!) post transplant...
My treatment consisted of "Ten packs" of platelets for a period of three months on a weekly basis which was akin to being put on some rather intense psychotropic drugs for the same amount of time!!! The hardest part of being a transplant patient is NOT going through the operation as many are so sadly led to believe, ohh noooo!!!!

The hardest part is in dealing with, and learning to cope with the many complications that WILL occur at any given time, and cannot be predicted from one patient to another!!! The patience required from the patient, and their immediate families is akin to practicing the level of patience a minister of faith is required to do so on a daily basis when dealing with their flock!!!

Knowing this ahead of time is to your advantage and besides that, it will help you in avoiding unrealistic expectations in the progression of your brother's treatment coming from his team of doctors and support personnel who have to wrestle with determining the best, and safest possible method(s) of treatment while at the same time primarily avoiding any potential "triggers" that may initiate organ rejection/attack via the patient's own unique immune system...

Here's another fact the some of us may overlook from time to time, including myself... Remember that not only is your brother's body, and the many complex systems associated with it's proper functioning are undergoing constant change... The transplanted organ is also going through some pretty remarkable changes too so, what started out as a match, followed by coalescence via transplantation, it needs to be understood that there is going to be a constant evolution of your brother's own unique body by the mere fact that the "marriage" of these two unlikely entities that make up this transplant, will undergo changes throughout their own post transplant life very much like what a successful marriage between a man, and a woman go through after putting up with each other for quite some time. Just a thought to ponder when one gets confused about why so many situations happen after someone receives "The Gift of Life!"

I hope this helps just bit JulieAnn, and at this time, I would like to take the opportunity to not only welcome you here, but to also encourage you to "nudge" your brother into possibly becoming a member of our very unique and special bunch folks here from different walks of life which I can vouch here from my own experience will always be supportive of him as we'll try our best equally to do the same with you in alleviating some of your own concerns as it relates to your brothers situation,,, At the very least, you can always count on us to lean on, or vent out your frustrations to - in these times of many challenges that we all must face from time to time throughout our own journey's through life, and life's terms.

I know this for a fact because I've done both in here many, many times, and I believe many contributors can attest to that yet, they still welcome me back every time!!! So, please give this website to your brother because, he will find out that he's not alone in his struggles, and will definitely find another home in here that has a very special FAMILY who will love him unconditionally!!! Well, so long as he tries his best to somewhat behave himself in here, and not blatantly insult any of the folks in here that offer alot without any expectation of repayment in sympathy, mutual respect, and commeraderie (I think I may have misspelled that but that's okay because after all, I'm not an English writing teacher - I'm a welding instructor!).

So once again, Sis! Welcome!!!!

Respectfully,
Henry

[JulieAnn]

Well, I've heard so much about you and feel blessed to finally "meet" you!  Thank you for your kind words.  Through the help of others I had your email address, but knowing from a recent post you were very busy I decided I should be patient.  Your post means so much, especially knowing you also had ITP and treated it successfully!!!  I'm not clear whether the type of ITP you get post transplant is the incurable type, or if it's some other form that is curable.  Do you know?  Roughly how long have you been in remission?

The issue at hand is, if they can put it in remission will they then allow him to have the Interferon treatment?  They told him he is now not a candidate for Interferon because he has ITP.  Henry, I don't know your history like the others do here so forgive me for that--I'll have to go and look at older threads.  But did you have Hep C treatment?

Yesterday (Friday) he went in for blood labs, and his liver enzymes have come down even more (they had come down the Friday before when he went in for immunoglobulin).  However, my brother asked his nurse about his viral load at my request and she told him it was so high it was "immeasurable."  That it was off the scale that the test provided and was in the millions.   My brother was a complete wreck last night!   And can you blame him!  But I did a little research and learned there are two different tests that are done to determine viral load--one measures a small amount of viral load, I suppose to detect the virus in someone where the load is small, and the other measures a large amount of viral load.  So I'm guessing that the test that was done was the first, and that was why it was immeasurable.  I also learned that a viral load in the millions is not uncommon, nor does it mean the liver is damaged or the person is desperately ill.  I talked to my brother again and explained a little of this to him, and then he realized that since his enzymes are dropping also, maybe he's not actually on death's door as his nurse led him to believe.  He has complained about his nurse ever since his transplant and yet he still has the same nurse--bit that's another issue.  I've never talked to her before, but I plan to call her Monday and ask some questions, including trying to find out his geno type.

Is there anything they can do to reduce viral load, other than beginning Hep C treatment with Interferon? 

Also, on Friday, he learned that his doctors have decided they want him to have the immunoglobulin treatments twice a week instead of once a week, but hopefully only for a couple of weeks, and then I assume they'll reduce it to once a week and see if his platelets remain high for a full week.

I feel like I have a million questions but my head is spinning.  I'll try to get some answers from his nurse on Monday and post back then.

Editing to say my brother is new to computers.  He did get one about a month ago, but hasn't felt well enough to get the hang of it yet.  I will encourage him to get on the forum and have already sent him a link.

Hugs to all!!!
Julie

[hanklive39]

Hi JulieAnn!

Here are some very interesting links that talk about various studies related directly, and indirectly to ITP...

As you can see in the first link that there are many treatment options currently being used on a variety of patients so, sit back and if you have time prepare to read through some unfamiliar stuff that will surely get you to want to ask many questions and hopefully between the many contributors here pulling together for you and your brother, we'll be as helpful as we possibly can in dissecting some if not all of the technical medical terms that can at times be initially intimidating to most of us who do not practice medicine in one form or another and yet newver fear because, we have Robin, and I believe one or two other nurses here that can help us out just in case we get stuck on some of the terminology being used in these links - Capeche? (that's Italian for "understand?")

Anywho here they are so, sit back and relax if you can, then come back, and fire away with the many questions I'm sure you'll have once you've finished reading

Now this is really, REALLY IMPORTANT JulieAnn... Please do not read too much into these articles because, some of the treatment methods are last ditch  choices, and may not be where your brother is at with respect to the choices he has available to him in his present condition - Okay???

http://www.annals.org/cgi/content/full/126/4/319

http://www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_Treatments.html

http://www.emedicine.com/emerg/TOPIC282.HTM

http://www.mayoclinic.org/itp/treatment.html

http://www.mayoclinic.com/health/idiopathic-thrombocytopenic-purpura/DS00844

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/31051.html

http://www.healthscout.com/ency/68/215/main.html

http://www.virtualbloodcentre.com/diseases.asp?did=65

http://clinicaltrials.gov/ct2/show/NCT00128882?cond=%22Purpura%2C+Thrombocytopenic%22&rank=14

http://www.merck.com/mmpe/sec11/ch133/ch133d.html

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura

http://www.webmd.com/cancer/tc/immune-globulin-idiopathic-thrombocytopenic-purpura-itp

Well, that's enough for now but if you want to read some more, check out all of these hit's I got from doing a google search alone:

http://www.google.com/search?hl=en&q=Idiopathic+thrombocytopenic+purpura+more:condition_treatment&cx=disease_for_patients&sa=N&oi=cooptsr&resnum=0&ct=col1&cd=1

In any event, enjoy the read and I hope this helps you understand better that your brother's condition may not be as life threatening as one may be led or rather misled to believe in the first place>

Respectfully,
Henry

[robin]

I knew you would pop in, Hank, and I had e-mailed Julie and told her that you were much more knowledgable than I ever would be and that you would also post a bunch of links to verify what you state. Am I getting to know you or what?

What you state about the hardest part being after the transplant is so correct. That has been more than difficult for me and it has taken the better part of a year to realize that and ACCEPT it. I've been lucky that I haven't had all the problems that most people go through. I feel so fortunate reading these posts.

I'll be interested in "meeting" your brother, Julie, so encourage him to log on. Hey, you can't be much more computer illiterate than I am. Keep your spirits high...robin   

[JulieAnn]

Thanks Henry for all the great links and information!  I've also joined pdsa.org (Platelet Disorder Support Association) and there is a wealth of information there.  The big question in my mind is whether the form of this auto-immune disorder that people with Hep C get is curable, or if it's the same incurable virus as described.  I plan to call PDSA and talk to them about it.  My brother's doctors have decided they want him to have intravenous immunoglobulin twice a week for the next couple of weeks and he went in today for another treatment.  I'm not sure how his platelets held up since his last treatment last week as I was not able to call him tonight, though I will in the morning.

Robin I am pushing him to join so I hope we'll see him here soon! 

Thanks again to all..
Julie