Organ rejection

[JulieAnn]

Can you all share with me what you know about organ rejection?  My brother's enzymes have been up and down but mostly elevated the last month so they did a biopsy Friday and today he's in the hospital with what his nurse said was severe organ rejection.  He was crying and so sad. 

So I'm reassuring him that this often happens, even many years after transplant, and to keep his spirits up!  His doctors make him feel like he's some sort of unique case and has not been a good transplant candidate because of all his problems.  But I tell him about all that I've learned on this forum and tell him he's not all that unique and this process is a roller coaster ride for most everyone, on different levels of course.  I told him to hang in there, eat well, walk the halls for exercise, encourage visitors, read his Bible and other spritual literature and be optimistic that he'll be back home next weekend.  Of course this is all easy for me to say and hard for him to do, but I hope it was good advice.

FYI, his transplant was 2 years ago and this is his second episode of rejection.

Besides elevated liver enzymes, are there any other signs of rejection?  I asked him how he felt over the weekend and he said kind of lousy but functional.

Any information or words of encouragement would be very much appreciated!

Julie

[willy]

Julie,  I don't have any real answers for you.  In the end it is up to his doctors, his body (his immune system, the new liver match, other health issues etc), and  depending on how one looks at it, luck/ fate/ Gods will.

I surely can understand how in addition to being more sick be is also upset about a possible second failure.  That doesn't mean this is the end but it is perhaps another of the new beginnings for a new liver, new therapy, or waiting for something else.

Whay he may also need is to simply complain, to give voice to his fear, uncertainty and dissapointment.  He may simply need to be able to vent his frustration and understand that even though you or others may not be able to change it you are there for him and also feel some of those same feelings with him.

Like I said.... I'm not much help with this but I do care.  I'm sorry to hear it both for him and for you.

All that one can do is to keep on digging, trying to succeed.  I think that Hank is one of those people who just refused to ever stop trying.  I hope that the doctors can come up with something for him.

In the meanwhile, my best to you both.

Willy

[robin]

Hi Julie...so sorry this has been such a difficult experience for your family. Some signs that I am aware of the indicate rejection are changes in your white count, number of neutrophils and lymphocytes, elevates liver function tests, weird rashes, oral pain, head aches and general feelings of not being well. I've read that rejection can occur even after many years. Has your brother's prograf level been stable? Is he still taking his prednisone every day? Geez, I am so sorry. It seems your brother has really had a hard time. Is there a way to get a second opinion? I'm thinking that it sounds like his transplant team is at a point of not being able to think clearly because of all his problems. Maybe a clear and open mind might be able to see the situation differently. Wishing you the best and give your brother a big hepper hug from me. Keep your spirits high...robin

[JulieAnn]

First let me correct something in my first post, and say this is actually his 3rd episode of rejection.  Apparently he is responding to the thymo treatment as his enzyme levels have already dropped a bit.  They say he will need to be in the hospital for 7 days.

Robin, he has not felt well since his first episode of rejection early summer last year.  His color is not good, and he is still very thin.  His prograf level has been between 5.5 and 11 for a while, but he experienced a brief drop just about a month ago, so they doubled his Prograf, but then his level was too high so they took him off of it for a couple of days to lower the level in his blood, then had him return to his normal dose.  I thought they sort of over reacted when they doubled his dose without checking it again first.  He is still on the low dose of Prednisone.  His white cell count has been low for a long time, in fact they had him consult with a hematologist last week about it but I don't think there was any conclusion or anything done about it.

Yesterday a doctor said something about "chronic rejection."  I'm wondering if the reason he has not felt well for so long is that he's been in some sort of mild rejection the entire time.  From what I've read, sometimes this happens and it results in needing another transplant after 10 years.  There may be newer medical advancements in this area, and the doctor did say they have some other medications to help him.

We have found an opportunity for a second opinion with the transplant team at UCLA.  Maybe as you suggested it's time for him to send his latest bloodwork and history out there and see what they say.

There is a bit of good news--the ITP virus he had seems to have responded to the gammaglobulin treatment and gone into remission.  He is off the treatments and his platelets are staying up!

Thanks as always Willy and Robin for your support and well wishes...

Julie

[robin]

Hi Julie,

I've read about chronic rejection and I really hope that the doctors can find a means so a second trasnplant doesn't become necessary for your brother. Good news is the ITP is responding.

Does your brother still take Myfortic? They had to stop mine because my white count was staying around 2.2---2.4 and they wanted it higher. Since stopping Myfortic, it has come up to around 4.0---4.5.

Have they considered changing him from ProGraf to GenGraf? Cyclosporin (Gengraf) works differently and they ended up having to change mine. I had a period they thought I was having some rejection, but that isn't the only reason they changed it. I was having horrible headaches and tremors where my hands looked like I had some palsy, which really only affected my fine motor coordination.

Is he being hospitalized for IV steroids? I'm sure he is really feeling that he is at wits end. Tell him that he is in my thoughts and I will send all my positive energy and good will his way. Best of luck to him. Keep your spirits high..robin

[JulieAnn]

Robin, I don't think he takes Myfortic.  I know he has trouble with his white cell count being low all the time, and they're giving him Nupagen to try to get it up while he's in the hospital now.  I don't know if they have given him GenGraf in the past, I'll have to ask him.  I think they were giving him GenGraf along with Program right after his transplant.  Does that make sense?  They did give him Rapamune after his last rejection but he was miserable on it and said he'd rather be dead than take it.  He believes this rejection may be because his Prograf may have been too low, because his blood levels have been running between 5 and 10, but mostly around 5-8.  Do you have any thoughts on that?

He does suffer miserably with headaches--really terrible headaches.  But the doctors are not very good about giving him medication for the pain.  They're trying to get him to take Elavil, which is an anti-depressant that is also prescribed for migraines.  But it has a lot of side effects and he'd have to take it every day and he doesn't want to.  I can see his point--why take a drug every day to treat a headache he might get once a month, when he can just take something for a matter of hours to treat it. 

I'm not sure I understand your question about the IV steroids--they have been giving him prednisone in his IV since he was hospitalized Monday.

I'd like to know the list of substances to avoid after transplant.  Ricky said they gave him a list right after his transplant but he can't seem to find it.  Shockingly, I asked his nurse about the list and she couldn't find it either!  She said the list changes all the time and rather than give him a list they would just prefer he not take anything without getting it approved.  But surely there are foods that affect these medications.  I think I will start a new thread and see if others could post the list on this forum, though I realize it may be too extensive to post.

As always I appreciate and will share your good wishes with him!

Julie

[MissyMouse]

Hey Julie,

I just wanted to say that I think your one heck of a sister to your bro and that your pretty cool!

Mouse

[robin]

Julie...hopefully your brother is beginning to respond to treatment and I second what Missy said about you being such a great sister.

I'm not sure if the low prograf level would be the reason if he has CHRONIC rejection, unless his level has been routinely low for the period he has had problems. Does that make sense. He also wouldn't be on both the ProGraf and GenGraf, I don't think since they both are for the same thing but work slightly different. It took my doctors about 8 months on constant complaints to switch me to GenGraf due to tremors and headaches. It is the older of the two medications for organ rejection. You can google it under Cyclosporin. GenGraf is also used for severe RA and other autoimmune disorders. It has a much lower incidence of headaches and I bet your brother's is from the ProGraf. Everyone I have spoke to or read a post on a forum about ProGraf and headaches and they say that it's all a part of the side effects.

I'm happy they are giving him IV steroids (prednisone in injectable form) but it can have some unpleasant side effects like feeling jittery and having trouble sleeping.

On the list of medications NOT to take...they also said that I should not take ANY medication prescribed by ANY other physician than my surgeon without asking. They also said not to take any medications with tylenol, ibuprophen, aspirin, aleve, midol, naproxen,  any herbals or over the counter meds.
Antacids can interfer with absorption of meds so take 2 hours before or after meds.
St. Johns Wort can cause rejection due to decreasing ProGraf levels.
Grapefruit can cause high ProGraf levels.
Avoid meds for cold symptoms because they may contain alcohol.
Avoid laxatives.
Hope this helps a bit...keep your spirits high...robin 
   

[JulieAnn]

Thanks so much Mouse and Robin for your kind, sweet words.  I was surprised how much they lifted my spirits!  I've been walking around feeling so depressed and wondering to myself why am I so down?  And then I realize it must be that my brothers struggle weighs on me even when I don't realize it.  Also Robin, thanks for the information about things to avoid.

I have lots of good news!  He was released from the hospital today.  Of course they increased his Prednisone to 10mg and added Cellcept and some other things he hasn't told me yet, but he said it was nothing new and all stuff they have given him before.  One of his doctors met with him yesterday and explained that they don't really know if his high liver enzymes in recent months was caused by the Hep C or by a low grade rejection--only if they had done biopsies during that time could they know.  But his enzymes dropped to normal levels after the thymo treatment, and they want him back in 3 weeks for another biopsy.  Of course he'll be back before then for lab work.

Anyway, I don't know if you remember from another post, the doctor had said sometime back that he would not be a good candidate for retransplant because of some unique aspect of his immune system.  But yesterday he said that if in fact he is having chronic rejection and they are not able to get it under control, that he has been completely compliant and they would retransplant him.  Also, the doctor said that he may very well be struggling with this new liver because there is something about it that his body is rejecting--in other words, it's not a great match for him.  And that another liver may behave differently in his body. 

This is all good news because Ricky was laboring under the impression that his team thought he was a poor transplant candidate period and that they were washing their hands of him basically and just waiting for him to die.  It's a long story why he felt that way, and his nurse has something to do with it, but I'll spare you that story for now and just say we have lots of new hope!!  They reassured him they were going to do everything possible to make sure this liver works, but if it doesn't, they will try again.  For me, this also means if his Hep C causes him to need another liver that they will put him back on the list.  We were worried about that too, since in his case the Hep C is coming back and doing damage faster than it does in most Hep C transplant recipients.

Robin, I told him what you said about your headaches and the Prograf and he asked me to ask you how often you were getting the headaches and any other details.  Obviously they won't want to mess with his meds much right now, but once he's stable again, maybe he should ask them to change him to GenGraf.

What a difference it makes to have some good news and a little hope!

Julie

[hanklive39]

If he's stabilizing with what they've done to him, DO NOT CHANGE HIS MEDICATION!!!

It sounds like he's developed an autoimmune disorder of some type or may have had it all along!!!

You remind me of my sister Diana who I think is the BEST anyone could have!!! I see that she may just have some competition to say the least!!!

Look! Here's the reality of it all... This transplant center is trying their best to get all of their ducks in a row so to speak, and quite honestly ,they've even admitted that they were caught off guard by the fact that they didn't perform the necessary biopsies when they should've in order to properly diagnose his condition, and the root cause of his problems with rejection... Now that they've made their "Mea Culpa" and they realized that they're not dealing with an idiot who just happens to be very inquisitive and a REAL GOOD Fighter for her brother's life ,they've decided to circle the wagons so to speak in order to make you feel at ease, and to give you a sense of hope but, DO NOT LET THEM OFF THE HOOK BY NO MEANS WHATSOEVER!!! CAPECHE???

Stay on them like a crow stays on a piece of deermeat on an interstate!!! Only let them off when you know for sure you can no longer get to them because, they will try to give you a false sense of hope!!!

Fight the good fight, and NEVER GI VE IN - NEVER GIVE UP!!! I'll try to post a list I got somewhere in my newly moved in apartment as soon as I find it but, Robin is Spot on when it comes to the things to avoid from her own list so, if there's anything else to add, I'll post it ASAP!!! Hang in there dear because your brother's a REAL FIGHTER!!! It also sounds like you're gonna go through a few more rounds so to speak before things start to settle down and your Brother starts to coast if you get me drift!!! Just remember that Robin is here for you, and so will I!!! Just not as often because of my work but, I'll try my best to help in any way I can.

Respectfully,
Hank

[robin]

Hi Julie...How great is that, your brother is now back home and not only is he home, he got good news on his way there. Ricky must feel much better feeling like he isn't fighting against his medical team. It's not fun when you are on different pages so far as your treatment and prognosis. Has your brother tried treating the hep since his transplant? I doubt though he would be a candidate since he is having chronic rejection.

My headaches were on a daily basis and so bad that I couldn't handle light or sound. It even was painful for someone to touch my skin I was so sensitive. Nothing would help the pain and they would wake me out of a sound sleep. I was also having tremors pretty bad so that probably contributed to them changing me to Gengraf. It comes with it's own set of problems and for years was the drug of choice until prograf came on the market. Like Hank said, unless there is good reason to changing up the meds, it will probably not happen now that he is more stable. Besides, then you have to go through all those extra labs while they figure out your dose.

I'll let Hank search for his list of "forbidden meds" since I don't know where mine is. If I happen to remember one, I'll let you know because I'm sure there are other things that just haven't sparked a memory in my mind bank.

So glad Ricky is better...give him a hug and keep your spirits high...robin



   

[JulieAnn]

Well the good news was somewhat short-lived.  He went for labs on Wednesday and his liver enzymes were elevated.  His nurse said they shouldn't have been that elevated that soon after stopping thymo because the thymo stays in your system for a while, so they're worried.  He goes for more labs on Monday, and possibly another biopsy.  Isn't it dangerous to biopsy so quicky after just having a biopsy a couple of weeks ago?

My brother is a basket case, which I'm sure is greatly caused by the Prednisone.  He's of course worried he has rejection that will spiral out of control, which is understandable.  I tried to reassure him that he had responded well to thymo so they would probably put him back on it if they find rejection, but apparently you can't take thymo that often and there has to be a period of time before they can give it to you again.  But surely they have other things up their sleeve?

I'm sorry to be such an emotional drain on this forum but I just have no one else to talk to about this.  First I try to bolster his spirits and give him strength but it leaves me upset and worried.

I know in earlier times that transplant recipients would suddenly go into rejection and not make it.  But I told him these days they've learned so much and have better meds so it's not very common.   Do you think that's true?

[robin]

Hi Julie...I am sorry that I am so late in responding but when I have the grands or am out of town, I don't always get to log on here. I do feel bad that it has been a couple days since you posted without a response, even though I am NO help with the problems your brother is facing. I've only had one biopsy since diagnosis of hepatitis and that was back on 2002 (I think) and I've also had no experience with rejection. Prednisone, I do have experience with and it can make you feel very nervous, jittery, and absolutley like a raging maniac. The transplant pharmacist recommended xanex when I was on high dose steroids.


Don't ever feel you are an emotional drain on the forum. That is exactly WHY this forum exists. We are here to pick each other up when they don't have the foothold to carry on. We are here to listen when someone needs to talk. We hope to be able to offer answers to peoples questions (although I can't help you here, someone else may well be able to). We care about you and admire your support of your brother. My only wish is that I had the answers you are seeking. I want for Ricky to do well. Keep your spirits high...robin

Keep your spirits high...robin

[MissyMouse]

I HATE Prednisone.  It makes me more of b*tch than Riba does.   They give me Prednisone from time to time to settle down my RA.  Hate it, hate it, hate it.

Mouse

[robin]

OK...you have been on treatment forever, Missy but I have been on prednisone forever. LOL. Ain't we a heck of a pair.  Keep your spirits high...robin