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Author Topic: Graft VS Host...info please  (Read 2663 times)
robin
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« on: May 14, 2008, 08:54:51 AM »

Hank may be the one who can answer this or perhaps Missy, but the pharmacist at UAMS thinks that I may be showing problems with Graft VS Host...in which the transplanted liver and my body start working against each other. I did a bit of research and it only shows treatment for an extended period of time with prednisone, which I am already taking daily. Does anyone have any input or experience with graft VS host? Thanks and Keep your spirits high...robin
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hanklive39
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« Reply #1 on: May 14, 2008, 06:50:17 PM »

Hi Robin!
Now I know this is a lot of stuff to muddle through but, this is what I've been able to come up with in order to bolster your research...

A word of caution: Unless your transplant Doctor can confirm that you have a form of GVHD, I would question his theory because this may also actually be CMV in disguise!!!
So make sure that he's really on top of it because early proper diagnosis plus early treatment is the key to survival if this is indeed GVHD. Wink Cool

Some of these are relevant to your situation and some are not but may exhibit so similarities:

http://adam.about.com/encyclopedia/infectiousdiseases/Graft-versus-host-disease.htm
http://en.wikipedia.org/wiki/Graft-versus-host_disease
http://www.nlm.nih.gov/medlineplus/ency/article/001309.htm
http://www.emedicine.com/DERM/topic478.htm
http://www.marrow.org/PATIENT/Plan_Life_after_Tx/Managing_Long-Term_Effects_of_/Graft-Versus-Host_Disease/index.html
http://www.marrow.org/PHYSICIAN/Adv_in_Auto_Allo_Tx/Imprv_Mgmt_of_Graft-Versus-Hos/index.html
http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/graft-vs-host_disease.jsp
http://www.lymphomation.org/bmt-gvhd.htm
http://www.bioscience.org/news/scientis/gvhd1.htm
http://content.nejm.org/cgi/content/full/356/4/335
http://www.marrow.org/PHYSICIAN/Patient_Care_Post_Tx/PDF/QuickRefGuidelines-PostTransplantGuidelines-3.pdf

Here's a book on the disease:
http://www.amazon.com/Graft-vs-Host-Disease-Third/dp/0824754727

Here are some more links that may just be more closely related to your situation:

http://www.ashi-hla.org/publicationfiles/ASHI_Quarterly/28_1_2004/Liver_Transplant_Assoc.pdf
http://www3.interscience.wiley.com/cgi-bin/fulltext/107583938/HTMLSTART
http://www3.interscience.wiley.com/cgi-bin/fulltext/113411971/HTMLSTART
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1687152
http://content.nejm.org/cgi/content/full/328/11/762
http://www.indianpediatrics.net/feb2001/feb-179-183.htm
http://dermnetnz.org/systemic/pdf/graftversushostdisease-dermnetnz.pdf
http://dermnetnz.org/systemic/gvhd.html
http://www.wjgnet.com/1007-9327/14/974.asp
http://pt.wkhealth.com/pt/re/ajtr/abstract.00024798-200308000-00020.htm;jsessionid=LrYP2WPRpCW13n0wqL5vhyfRPvxzWQt3nQmg7gT9QDD3vWF6PLQf!-2123996546!181195629!8091!-1
http://www.transplantjournal.com/pt/re/transplantation/abstract.00007890-200303150-00028.htm;jsessionid=LrYGGtVlDTZ9F1MJrLlG8PXvsWsF8kWNWPJGssQFwvMdGy5sbSCh!-2123996546!181195629!8091!-1

Here's one that may break the monotomy of all these articles ,and might even humor you:

http://bnjammin.blogspot.com/2008/01/stuff-house-is-made-of.html

Here's an interesting alternative method of treatment for what I can only presume is primarily for some of the milder cases of cGVHD:

http://clltopics.org/BMT/GVHDDevelopments.htm

Here's some links to books that can be purchased through Google and their affiliates or previewed for their content:

http://books.google.com/books?id=iCtpH2Hj-0cC&pg=PA658&dq=gvhd+in+post+liver+transplants&sig=LukPlGJ28nnE98e2XdeBXOJSoAo#PPA658,M1
http://books.google.com/books?id=GUYnf088U4gC&pg=PA206&dq=gvhd+in+post+liver+transplants&sig=T5U_EidWYgcwsO3j8VZLqNnN1vU
http://books.google.com/books?id=ncMGwjZyvnIC&pg=PA238&dq=gvhd+in+post+liver+transplants&lr=&sig=kKV91Svb1Fghg4f5fNonwzoZuVQ
http://books.google.com/books?id=bw7esE2kfwUC&pg=PT724&dq=gvhd+in+post+liver+transplants&lr=&sig=pElpEjETczDJ4JQtTBfz0txfK2Q
http://books.google.com/books?id=lXz_szeyKeYC&pg=PA318&dq=gvhd+in+post+liver+transplants&lr=&sig=GeBpFaoBx41-zPxqFqObTncyiPA

Start reading in this book on page 416  by using the blue arrows in the upper right area of the web page and, do the same with all of the other books:

http://books.google.com/books?id=ahddq6n6by4C&pg=PA418&dq=gvhd+in+post+liver+transplants&lr=&sig=XrEPxv4XfG95HC3m6kBtP6FOe5A#PPA416,M1
http://books.google.com/books?id=t6VBKdoaU7IC&pg=PA319&dq=gvhd+in+post+liver+transplants&lr=&sig=gSobnEtSEpGbkO_Gug6ewllz-Qc#PPA319,M1
http://books.google.com/books?id=safcpaDcq3EC&pg=PA235&dq=gvhd+in+post+liver+transplants&lr=&sig=1PURgM3YZhfCvkPSblnBqdGX1iI

Please read starting from page 500 in this book:

http://books.google.com/books?id=Giw-j_zJ16MC&pg=PA509&dq=gvhd+in+post+liver+transplants&lr=&sig=9vuyam0maRLTxeuEHfGmSnAetsc#PPA500,M1

Here's an interesting story:

http://anngregory.blogspot.com/2007/12/i-10-to-houston-and-chronic-gvhd.html

Well, that's all I can come up with for now. I would post more but, I need to get ready for tomorrow's teaching session which should be interesting to say the least!!! Wink
All I can say to you is that I hope it's really what my spider senses are telling me... In that it's really the CMV that's found in most of us starting to rear it's ugly head because, that is far more treatable, and less life threatening than if it is indeed GVHD... You know I'll be praying for you, and I know everyone will also too!!!

Now remember when I told a long time ago as it seems, that life after a liver transplant would be very interesting and exciting to say the least??? I was praying that you wouldn't have to go through a similar journey as mine... I'm gonna pray more so that you do not have to go through this because, this is going to be rough on you, and I say this because I've been there - Done that. I strongly believe that you can overcome this too just like you did with the rest of your previous battles so get yourself ready for a rough ride for the next few months!!! Get through this, and everything else that you may or may not encounter will be "Gravy Baby" Wink Wink Wink Cool Cool Cool Grin Grin Grin

Respectfully,
Henry

P.S. Willy, Helen. why is it that I'm having difficulty in attaching photos to my posts??? Is there something wrong with the application or server???


« Last Edit: May 14, 2008, 07:06:26 PM by hanklive39 » Logged

Well enough to live another day!!!
One day at a time.
Genotype 1a
Liver Transplant 10/08/1997
Been on and off treatment more times than I want to remember - Still fighting though, so NEVER GIVE UP HOPE!!!
robin
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« Reply #2 on: May 15, 2008, 08:37:50 AM »

Now why did I start off my post saying that you would probably be the one with the answer. Gosh this is a lot of information to go through but I'm thinking I will go to each on and print it and then sit down and do some reading.

Things have gone crazy at my TP's office. They fired all the coordinators and have new ones working. Not sure what happened but I do know I have been calling off and on with the same complaint for a while now and was not taken seriously by the coordinator that I had assigned to me. Yesterday out of frustration, I called the TP pharmacist and he was concerned and got my doctor immediately and they are having a conference today to discuss it. Should hear back this afternoon.

Will also research CMV because to be honest, I haven't had any symptoms of rejection so I didn't bother to really look into anything because I didn't want to plant ideas or side effects in my head. With that said, maybe ignorance isn't all bliss.

Thanks again for all the articles and I will get busy and start printing. You are a great resource, Hank. I hope you get your pictures back up and posted. Keep your spirits high...robin     
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robin
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« Reply #3 on: May 15, 2008, 08:46:58 AM »

OK...I read a few of your articles...online and I'm with you on the CMV. The pharmacist was saying "chronic" rather than acute but it looks that the prognosis isn't a great one for either. Staying positive here but I would NOT consider a second transplant even if this liver doesn't like me any more. Keep your spirits high...robin
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willy
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« Reply #4 on: May 15, 2008, 09:17:27 AM »

Hank; a member mentioned to me that pictures were't posting a few days ago.  It looked as if we had a lot of available unused space.  I deleted a few more old pictures off and THEN noticed that the available space had not changed.  It looks as if something is messed up but I'm not sure at this moment what it is. 

Got to go off to work but will try to check it out tonight.

Willy

error message:
(The attachments upload directory is not writable. Your attachment or avatar cannot be saved.)
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hanklive39
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Happy Hank


« Reply #5 on: May 15, 2008, 10:14:48 AM »

Hi Robin!

I talked to Dr. Cassavilla in Argentina today, and without having all of your necessary numbers and history in front of him, thinks that you're most likely developing CMV as opposed to GVHD but, because he doesn't have any knowledge of your specific symptoms, he cannot be 100% sure.

He did suggest to have you go over the list of symptoms provided in one of the .pdf files I previously posted in this thread, and to compare them with what you are currently experiencing... This way, through a process of deduction, we can further isolate what is really going on with you.

In any event, you will get through this in flying colors so please don't let what you read get you down my friend!!!
If you get to talk with your transplant Doc., tell him to see what's going on as far as CMV is concerned within your immune response because alot of Transplant surgeons can easily misdiagnose GVHD when actually it's the CMV that's starting to rear it's ugly head!!! Even some of the best were fooled more than once so, I'm leaning a bit more heavily towards that possibility. CMV has a much better prognosis than GVHD, and I should know as one who survived from it's ravages!!! Cool Cool Cool

For anyone unfamiliar with this virus, one needs to be immuno-supressed or  have enough of a weakened system in order for it to attack your body the way it does, and it makes experiencing the side effects of HCV in comparison to feel like one is experiencing a 24 cold bug!!! The CMV being active will inevitably make you feel like you've been pumped up with gallons of infergen, radiation treatment, and are experiencing the side effects of that type of experience only on a very huge scale!!!

So, anyone who has had some form of cance radiation treatmentr can relate to it as close to being thrown into an active reactor core with no protection when compared to radiation therapy!!! I'm not exaggerating too much!!! However, the treatment does work!!! Going through the treatment is another story because, if anyone thinks that treating HCV is as bad as it gets, really is unaware how intense the treatment for active CMV is in comparison!!!

Actually, there is no comparison because it's like being given gallons of infergen in order to get better so, if this sounds like a comparison, it's about as close one as I can come up with.

You know that I'll be praying for you as will many others so, strap yourself in and hang on tight because, your in for another life changing ride!!! Although if I'm right, this one won't be as rough as the previous ones  -  hopefully. Wink Grin Grin Grin Cool

Respectfully,
Henry

P.S. Hi Willy!!! Thanks for the update on the pic problem!!! Grin Cool Wink
« Last Edit: May 15, 2008, 11:19:57 PM by hanklive39 » Logged

Well enough to live another day!!!
One day at a time.
Genotype 1a
Liver Transplant 10/08/1997
Been on and off treatment more times than I want to remember - Still fighting though, so NEVER GIVE UP HOPE!!!
KatNyerHAT
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« Reply #6 on: May 16, 2008, 12:01:36 AM »

Hank,  Grin Grin Grin Grin

Whether you choose to believe it or not, your presence is missed when you're not around.  You are one to be very thorough with information and to someone like me who is fairly tp ignorant (I count on Robin keeping me up to date on the latest).  Being the only other tp recipient here, I'm grateful that you are here to give Robin this information and support. 

Robin, dear.  Looks like another hurdle if it's CMV and you are strong. Remember how far you've come.  And we're all here to make certain you get through this. 

Thanks, again, Henry!  And remember that many of us are light of heart and try not to take life so seriously. Grin

Big hugs,
Kat
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robin
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« Reply #7 on: May 16, 2008, 08:45:41 AM »

Thanks for your input...Hank and Kat.

So far as symptoms, I've had bruising (even an insulin shot will bruise me for a couple of weeks), am anemic (not iron deficient), have had frequent weird rashes that itch and blister, my mouth is driving me nuts...like I've eaten a million hot peppers and I've gritted my teeth so much I had to get a crown to replace a broken eye tooth that I cracked and another tooth had been ground down so far they had to build it up, and probably the worse symptom (outside the headaches, body aches, ringing ears and GI upsets...which are pretty much common and expected) is this feeling that I want to scream, or hit someone or blow my own brains on the side of the wall. Would never do so but I feel somewhat like I have severe riba-rage.

Dr ordered cyclosporin but insurance is being sluggish about approving and it's in appeal now. I'm really just tired of all this. In fact, I'm thinking that at least when I start treatment, maybe these sides won't be as bad. Who knows.

Since they fired both the TP coordinators, and to get anyone to listen, I had to call the TP pharmacist who contacted my doctor right away, I'm thinking I'm not the only one who has been blown off when they call with sides. No one seems to even consider CMV and I guess that is a possiblity since I've had chicken pox and if memory serves me, that is the causal factor of CMV. I also tested positive for the Guillan Barr Virus which causes mono.

Looking forward to your continued input, Hank. BTW...how do you know all these doctors and have such easy access to them? I thought I had a pretty easy time  connecting with the medical profession but you are a champ.

Bug Hugs and Keep your spirits high...robin
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hanklive39
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« Reply #8 on: May 16, 2008, 03:43:59 PM »

Hi Robin, KatNyerHat!

First of all, I didn't know that you had a liver transplant Kat (Btw, over here in Pittsburgh- they abbreviate transplant by using the letters "Tx" but, since this forum is about HCV, I guess I'll have to get used to using the abbreviation "Tp." What is the significance of my comment regarding the abbreviation? Well  Pittsburgh, this is the place where the first successful liver transplants were started even though the first liver transplants were actually performed in Denver, CO with some measure of success way back then but, in todays measure of comparison -they were considered failures.) So Congratulations Dear!!! I knew that you were waiting but, I guess because I let life happen more so these days, I tend to be the last person to get that sort of news, and I apologize for that! Shocked Shocked Shocked Grin Grin Grin Cool Cool Cool

To answer your question Robin, regarding how I've gotten to know all these Doctors and all... Well, Dr. Cassavilla was the transplant surgeon that performed my transplant, and ever since he decided to leave Pittsburgh to set up a transplant center in Buenos Aires, Argentina - he has kept in touch with me and my family well because, we became friends and me and my family were able to help him out in getting the necessary surgical equipment to Argentina so he could set up there rather expeditiously!!!

I was his last surgery in Pittsburgh before he moved to Argentina so we had some sort of strange bond going on that is still strong today!!!
He actually called me from Machu Pichu in Peru way up in the Andes mountain range to see how I was doing after being let out of ICU to be allowed with the rest of the hospital population so, I thought: "Man! This doctor really cares alot about me by calling me from his vacation to find out how well I'm progressing!!!"
He always reminds me how I was his toughest patient!!! He reminds me when I was waiting how resilient I was, how much of an enigma I still am today for someone who was thought amongst the rest of the Tp surgeons @ UPMC as being a very bad candidate for Tp, and that they would be surprised if I made it past my first year!!! Heck, I thought they were just saying that to inspire me to prove them all wrong which is what they were able to accomplish, btw!!! Shocked Shocked Shocked

I guess I was in Pittsburgh at the right time when the last of the original transplant team with Dr Starzyl, decided that yes indeed, I needed a transplant regardless of the risk factors involved, and the objections coming from the rest of the team...
I personally told everyone of those naysayers that I would make them look silly, and I still am - close to 11 years later!!! Shocked Shocked Shocked Grin Grin Grin Cool Cool Cool
Now I don't know how they do things in other centers around the country but over here in Pittsburgh, a post Tp survivor gets seen by a variety of Tp surgeons depending on the rotation they're on because at different times of the year, one may be seen by one doctor then seen by another three months later so, they're not always performing surgery.

Every Doctor that had to dubious distinction (Yeah Right!!!) of being assigned to me got the "Cabrera stress test" from me! Wink Wink Wink Some passed, and some failed miserably!!! Cool Cool Cool Grin Grin Grin However, this was noticed by Doctor Fung who was in charge at that time, and he decided that when they had a new surgeon join the tp team, that surgeon had to pass the "Cabrera stress test" in order to prove they had enough "Moxy" to continue practicing @ UPMC so, that's another reason why I know so many of these surgeons so well, and have such easy access to them most of the time yet, I think I really got most of their respect from when a bunch of us Post Tp patients and Tp coordinators and Doctors went down to Washington D.C. back in 1998 to protest for more fairness towards Transplant patients in front of then Donna Shelaila's office of the HHS Sectretary!!!

We caused a bit of a commotion there to say the least, and I was almost escorted out of the Dierksen Building where they held hearings regarding the changes that UNOS proposed with their infamous MELD score @ Capital Hill because, my protesting was considered too loud and abrasive!!! Roll Eyes Roll Eyes Roll Eyes Huh Huh Huh Wink Wink Wink Cool Cool Cool We also attended the NIH hearings for the proposed changes to the UNOS organ procurement system where Doctor Fung unexpectedly rushed the stage of the auditorium to challenge the absurd assumptions that the then Heart Surgeon, "Doctor Dummy", later turned Tennessee's US Senator William Frist was spewing out to the rest of the audience which was at the very least really amusing to experience!!! Shocked Shocked Shocked Cool Cool Cool When Dr. Fung got through with the then Dr. Frist, he was playing handball on the sidewalk curb which was fascinating to be a witness in that exchange!!!

After that trip, alot of the Tp surgeons found out that I was amongst some of the patients that attended all of the meetings down in DC so, thet asked me what I witnessed there and because of what I shared with them, I was able to establish some lasting relationships with them in which I still keep in contact with some of them even today!

I guess these are some of the reasons I've established a relationship with most, if not all of the surgeons that have once practiced or learned their Tp skills first @UPMC
I guess that for some of them, I tend to establish an everlasting impression in their careers, and for others I'm the enigma who refuses to give up in spite of what I've been through so, NEVER GIVE UP!!!

In my book, anyone who's been through a major organ transplant are the real Champions so, if I'm included in that list then, it's a pleasure to be amongst Champions!!!

And as far as taking life too seriously is concerned Kat, I do so because of how in the past before my transplant or illness - I took life too lightly instead of realizing, and accepting the fact of how fragile we really are... I take my life, and life in general very seriously these days as a matter of necessity. This is another reason why I'm still fighting, and I guess it's also why I'm still alive, and living life on life's terms. However, thank you for your concern. Grin Grin Grin Kiss Cool

Finally for both of you, I would like to suggest that you both read  the book authored by Dr Thomas E. Starzyl Titled: "The Puzzle People" because once you do, you will better understand how transplantation started, how it has come since it's early beginnings, and you'll have a better appreciation as to what you both now have for better or for worse, have become! I know that you will at least be fascinated by some of the stories that Dr. Starzyl writes about in his book, and I consider this book a "must read" for anyone who is a transplant recipient or is waiting for a transplant or is getting prepared for that inevitability for some. this book can be found in most of the better libraries around the country and in most well stocked book stores for a fairly reasonable price if one chooses to purchase the book... However, i strongly suggest to see if one can borrow it first from their local or regional library. It's a well written book by none other than the "Father" of liver Transplantation.

Respectfully,
Henry 
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Well enough to live another day!!!
One day at a time.
Genotype 1a
Liver Transplant 10/08/1997
Been on and off treatment more times than I want to remember - Still fighting though, so NEVER GIVE UP HOPE!!!
Hank's mom
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« Reply #9 on: May 16, 2008, 08:48:44 PM »

Hi TP Gang -

Sorry to be so dumb - what is CMV? Canine Militia Veterans? Chronic Murky Views? Carpal Mandible Vegetables? Come-and-get-it Macho Viagra?

Anyhoo, as you like to say Hank - so glad you don't mind being information central for us tp before/during/after folks.

Robin - hope your doc can get the team back in order for you - good thing you thought to call the tp pharmacist - I would have solved the problem by yelling and crying.

Kat - Hope you're doing okay.

Hugs,
Susie
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« Reply #10 on: May 17, 2008, 04:38:15 AM »

Hi Momxfive!

First of all, No question is a dumb question so, let's get that straight from the beginning - Okay???

It's understandable when most people that I know have never even heard of CMV, and even less know what the abbreviation means so, I don't blame you for taking a stab at trying to decipher their meaning especially in such a funny manner for which I commend you!!! Grin Grin Grin Wink Cool

CMV stands for Cyto-Megalo-Virus... It's pronounced: (si-to-MEG-a-lo-vi-rus)... In an attempt to get some of the best information available to you and others interested, I will defer to the website links posted below  because, I might just forget to forget to add one or more important perspective with regards to some of the topics that will be covered in full - if one just clicks the links listed below:

http://www.cdc.gov/cmv/facts.htm
http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm#Prevention
http://en.wikipedia.org/wiki/Cytomegalovirus

This is basically the same page as the last link yet, I added it to the list because it's definitely important to read:

http://en.wikipedia.org/wiki/Cytomegalovirus#Immunocompromised_patients

Here are some more links:

http://www.labtestsonline.org/understanding/analytes/cmv/test.html
http://www.medterms.com/script/main/art.asp?articlekey=14087
http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm
http://www.thebody.com/index/treat/cmv.html
http://virology-online.com/viruses/CMV.htm

Here's an interesting link which I'm sure Robin and possibly other folks in here also might be interested in... I was given this stuff to kill the CMV when my infection decided to rear it's ugly head:

http://www.cytogam.com/?OVRAW=cytomegalovirus&OVKEY=cytomegalovirus&OVMTC=standard&OVADID=3011309021&OVKWID=29469388021
http://www.cytogam.com/about_cmv/incidence.aspx
http://www.cytogam.com/about_cmv/infection_disease.aspx
http://www.cytogam.com/about_cmv/signs_symptoms.aspx
http://www.cytogam.com/high_risk_transplants/liver_transplant.aspx
http://www.cytogam.com/tools_resources/links.aspx

Here's the prescribing info for Cytogam:

http://www.cytogam.com/pdfs/Cytogam%20PI.pdf

This one is affectionately for Susie... A.K.A: Momxfive... Now, I'm just joking here so please don't get mad at me Wink Grin Cool:

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

Well, that about it for now so, I hope this helps!!! Wink Grin Grin Grin Shocked Shocked Shocked Cool

Respectfully,
Henry

« Last Edit: May 17, 2008, 04:44:12 AM by hanklive39 » Logged

Well enough to live another day!!!
One day at a time.
Genotype 1a
Liver Transplant 10/08/1997
Been on and off treatment more times than I want to remember - Still fighting though, so NEVER GIVE UP HOPE!!!
robin
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« Reply #11 on: May 17, 2008, 08:36:26 AM »

Hank, you are always the source of great info and I especially loved the link to Susie. Right now, I am not doing anything. Go figure. I was told that since I was going to CA that I would need labs done at least once while out there and would have to see the doctor within a week of starting the new med which wouldn't be possible. My doctor only sees patients on Monday and the next monday is Memorial Day. I don't see any other doctor but the one who did the TP. So, I am just going to hang low until I get back.

I laughed out loud at your description of the new doctors having to pass the Cabrera stress test. I bet you could give them a run for their money if you wanted to. I'm so glad you have been able to prove them wrong in their first assumption you would not be a good candidate for transplant.

BTW...our Kat hasn't had a TP yet. I'm thinking that she probably won't when that time comes around. NOW, I may well be wrong in that assumption because we all know about assumptions.

keep your spirits high...robin
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Genotype 1-A
Liver Recipient 11-22-2007
Keep your spirits high...robin
DougV
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« Reply #12 on: May 17, 2008, 03:06:35 PM »

I was thinking about Robin and Hank as I read an article a few days ago.  It was pointing out that transplant drugs have caused problems with pregnancy.

So please yall too, consider carefully any decision to try and be with child.......................  Grin  Grin

Doug
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Diagnosed 10/04 1a 3/3
Round 1 2005 48wk Pegintron Relapsed
Round 2 2007-08 39wk Infergen Relapse
9/26/08 Diag. Stage 4
Round 3 Pegasus/Riba/Incivik 6/25/11 -
Hank's mom
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"It ain't braggin' if you done it." - Dizzy Dean


« Reply #13 on: May 17, 2008, 06:28:15 PM »

Hey Doug -
They make you sign a promise not to get preggers. It's right there next to the fine print that says sex might not be fun for a few days.

Susie
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"Find out who's the Victim. If you can't tell, it's you."  –Yardley

"… One hand full with quietness, beats two hands full of vexation of spirit"  – Amarillo Slim

Both referring to the game of poker.
hanklive39
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Happy Hank


« Reply #14 on: May 18, 2008, 12:46:52 AM »

First of let's not confuse the public by making a blanket statement saying that transplant patients are recommended NOT to have babies, or the women whom recieve the gift of life consider themselves too risky to experience a pregnancy because, nothing could be further from the truth with such a blanket statement!!!

More detailed, specific information must be included in any statement so that laypeople can understand the special circumstances involved and what criteria needs to be met before such a serious condition warrant such a limitation as a warning of any type.

Here are the details that need to be addressed in order to better explain the current warnings and their specific origins...

"The Associated Press
Tucson, Arizona | Published: 05.17.2008
advertisement
WASHINGTON — Health regulators warned again Friday that Roche and Novartis drugs prescribed to organ transplant patients can cause miscarriages and birth defects when used by pregnant women.
The Food and Drug Administration last October said it received reports of miscarriages and infants born with ear and mouth birth defects after their mothers took Roche's CellCept. At the time, FDA added its most serious warning to CellCept and a similar Novartis AG drug, Myfortic."

Now let's become educated here first... The above mentioned transplant drugs are given to a majority of post Tp patients for a limited amount of time, and are usually removed from their medication regimen shortly after they start to show signs that the host is accepting the graft, and conditions are much more stable for the patient which usually happens within the first year of recovery from Tp surgery.

Remember this; These drugs are primarily used during that time frame, then weened from the patient along with the steroids they've been prescribed once the graft (Transplanted organ) shows signs that the host (Tp Recipient) is accepting the new organ primarily from the use of the FK-506 or Prograf drug which is most often used as the primary immuno-supressant drug! There are very few exceptions that are forced to take a different primary immuno-supressant agent such as cyclosporin in some cases because they develop an allergic reaction towards the Prograf but, this only happens with less than 3% of the total post transplant recipients involving liver transplants.. It might be a slightly larger percentage when one includes the data from other organ transplants but, not by very much and, I'm sure it amounts to less than 5% overall.

Just to be on the conservative side, UPMC cautions it's own female post transplant population to first consult with their Tp surgeon before considering pregnancy because of this very reason but, it does NOT PROHIBIT them from becoming pregnant nor do they force them to sign any such type of waiver that legally bounds them not to have children once they receive their "Gift's of Life." They do strongly recommend to wait one year post Tp before becoming pregnant because they figure by then, they're no longer being prescribed these drugs so, the pregnancy can go rather smoothly!!

Many proud mothers have had successful pregnancies post transplant without any complications since successful transplants first started with some regularity!!!
These specific drugs that have been mentioned are  being used now with some form of regularity but back when I received my "Gift of Life", these drugs mentioned that are associated with the warnings were still in their experimental phases, and I remember being part of a clinical trial when they prescribed me with the cellcept which was only given to me for a very short period of time!!! If I remember correctly, it was given to me for only the first  two or maybe three months.

So in summary, heed to the warning if a woman is still being prescribed these drugs but, please do not confuse this warning as being a blanket statement saying that ALL post Tp women cannot become pregnant - PERIOD because, that is not true nor is it accurate!!!

Here are some links that detail the warnings being given:

http://www.azstarnet.com/allheadlines/239460
http://www.medpagetoday.com/ProductAlert/Prescriptions/tb/7152
http://www.rxlist.com/cgi/generic/cellcept_wcp.htm
http://www.fda.gov/medwAtch/SAFETY/2007/CellCept_dearhcpoct07.pdf
http://www.iht.com/articles/ap/2008/05/16/america/NA-GEN-MED-US-Regulatory-Warning-Roche-Drug.php
http://www.startribune.com/lifestyle/health/19011434.html?location_refer=Health%20+%20Wellness
http://news.google.co.th/index.html?scoring=d&ned=us&filter=0&ncl=1213301605&hl=en&topic=m&sa=N&start=30

Here's another warning related to the same drugs with respect to brain injury:

http://www.msnbc.msn.com/id/24051443/

Respectfully,
Henry
 
« Last Edit: May 18, 2008, 12:51:32 AM by hanklive39 » Logged

Well enough to live another day!!!
One day at a time.
Genotype 1a
Liver Transplant 10/08/1997
Been on and off treatment more times than I want to remember - Still fighting though, so NEVER GIVE UP HOPE!!!
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