hepatitis C

I have a 16 year old son who just went through a liver transplant. He was doing fine until his doctor raised his antirejection medication and swearing that he was rejecting the new liver. He has had numerous biopsies and ultrasounds done. Nothing is showing rejection. He is on Prednizone and Cyclosporin. She raised the Cyclosporin level to 800mg twice a day. When she raised his meds before, he started turning jaundice. Now at 800 mg twice a day he has become more jaundice. She refuses to change the medication or even think that it could be the medication causing this. How can tell if it is the medication? If it is, how can I get her to change the medications? What can I do?

[nygirl7]

Onewolf,

There are a few transplant recipients on this forum that have vast knowledge of the entire situation (most of us dont).  Since it's after 5EST they might have gone home for the day but we will definitely flag them and make sure to bump your post back up if they don't see it today.

Anything to help you and your son.  I wish I had knowledge in this area and am sorry I can't help but when I get in tomorrow I will remember to check and make sure someone smarter than I answers you.

We all will help as much as we can,
Deb

[copyman]

Sorry I can't help but I just wanted to say my prayers go out to your son & your family.

[eureka254]

You might want to try posting your question on the Transplant forum:
http://www.medhelp.org/forums/Transplants/show/230?camp=msc

I'm unable to contribute any answers, but I hope you find some soon -- as nygirl said, there are a couple of transplant recipients here, but you might find more forum members who have familiarity with your son's situation on the Transplant Forum.  Best of luck to you and your son.  ~eureka

[portann]

Can you talk to the doc again and tell her very directly that you think it's the increase in Cyclosporin causing his jaundice? Cajole her or whatever it takes to get her to listen to your concerns and to explain clearly why there's no reason to be concerned about this.

I peeked at the transplant forum just now and it's not as active as this forum, at least not right now. Is there someone over there you could flag down and send a private message to?

I can hear the distress and frustration in your words, wondering if the doctor is on top of this, providing your son the best possible care.

Three members here who had liver transplants are mikesimon (transplanted 2000), IAmTheWalrus (transplanted 2006) and Orphaned Hawk (transplanted 2008 or 2009). I hope one of them will see your post soon and offer some words of wisdom.

The most common reason for transplants in young people is biliary atresia, not cirrhosis. Is that what led to your son's transplant?

For what it's worth, I'm hoping your son's doc knows what she's doing and that all will turn out right.


Sending best wishes to you both,

Susan

[HectorSF]

I am no expert on post-transplant  (I am just getting listed fro a transplant now) but here is what I know...

I assume you are your son's primary care giver? So you and the transplant team need to work together on this as you are trying to do.

It is not uncommon for a recently transplanted patient to experience rejection. Rejection is most common in the 6 months after transplant surgery,
but it can happen at any time.
Warning signs of rejection for liver transplant patients:
• A fever over 101 degrees F
• Flu-like symptoms such as fatigue, chills, nausea and body aches
• Yellow skin or eyes also called jaundice
• Fatigue
• Pain or tenderness over liver

If the transplant team thinks you may be having rejection, tests are
done to check if rejection is happening in your liver.
Tests may include:
• Blood work
• Liver biopsy
These tests are also done on a routine basis, even if he is not having symptoms. Sometimes patients with rejection have NO SYMPTOMS at first, so it is important to do routine checks to catch any “silent rejection” early.

If the liver shows signs of rejection, the dosage of your immunosuppression drugs will probably be increased. If the biopsy shows a significant amount of rejection, your son may be hospitalized for more intensive immunosuppressive therapy.

If your son doesn't show any signs of rejection ask his doctor why he thinks your son is rejecting? This just may be a communication problem.

Jaundice is not a side effect of Cyclospine. If you look at the package insert that came with the med it will tell the the common and other side effects of Cyclospine. .

What you can do-
You can always ask for a second opinion. Maybe it would help to put your mind at rest if you heard another doctor's diagnoses?
Transplant hepatologists deal with organ rejection on a daily and weekly basis. I am not saying they can't make mistakes but if they don't management a patient's rejection quickly and properly the organ may be rejected. This is not something to be taken lightly.

Hopefully some else may be able to help with more info.
Best of luck to your and your son. Keep us informed.
Hectorsf

[ClippedWings]

Hang in there as best as you can.  I had a transplant in mid-July and the duct system on my new liver took a long time to start working properly.  About 3 weeks post-transplant my Bilirubin became highly elevated and my transplant team also raised my immunosuppresants to make sure that I did not have a rejection episode while we waited for the Bilirubin to start coming down.   I also became very jaundiced, much more than I had ever experienced pre-transplant.  Now just a few weeks later my numbers are rapidly correcting to normal and the jaundice is gone.  Hopefully your son has a similar turn around.  
Bill

[HectorSF]

Bill,

Glad you are doing well post-transplant despite a few bumps in the road. Glad you got a new liver and on your way to a new, healthy second chance at life. Great news.

Best-
Hectorsf

[mikesimon]

I think you have to trust your transplant team on this. Increased immunosuppressive doses should not result in jaundice or elevated enzymes.
I don't know what your Son's underlying disease was but distinguishing acute rejection from - say HCV recurrence can be very difficult. I just don't see the danger in increased Cyclosporin.
I hope this resolves quickly and positively.

Good luck,
Mike

[Trinity4]

I'm sorry but I just got on Medhelp now and I don't know what the hell you are talking about.  I see the post is gone but how DARE you call me names and accuse me or anyone else of such things.  Don't flatter yourself,  why you think I care enough to go to the trouble.

Singling a member out, calling them "strange gals with desolate lives" and "Desolation and destructiveness is your real name." is a direct insult, demeaning and intentional and you should be suspended for it.

Trinity

[Emily_MHModerator]

Offending posts are deleted, so let's drop it, ok?

Emily

[lindh3270]

not sure if I'm in the right place but my husband was diagnosed with hepatitis c in the mid 90s he had a viral load last yr of 14 million and he tried to get ons and got denied he signed up for disibility got denied he is unemployed at the moment how is he suppose to get treatment help plz

[Bill1954]

Hi--

You’ll want to go to the top of the page and click on the green ‘post a question’ button; it will allow you to open a new thread. Sorry to hear of your husband’s problems; the meds might be available from the manufacture’s patient assistance programs, but they won’t cover labs or doctor’s fees. Other options might be available…

-Bill

[Magnum]

What about a second opinion?

Magnum