Reaction to Antirejection Meds

Good Morning to all struggling with Liver Disease.

Mike is almost 4 monts post transplant (May 1).

He has a new, disturbing symptom.

He has horrible mouth sores (thrush?), aching gums, jaw, teeth, face.

He feels so ill he has been in bed 3 days.  His routine tx blood tests were normal, good even...prograf level, rapa level, liver function tests, cbc, electrolytes...best since long ago!

The transplant coordinator has taken him OFF the newly begun Rapamune and returned him to a regime of higher Prograf (5AM, 5PM), abandoning the transition to Rapamune entirely.

He is also to stop using the chemo chream prescribed for the skin cancer on his face.

Maybe one or the other or both have caused this problem.

He is barely eating or drinking...so staying property hydrated has become a problem.  He is grumpy and I am really worried.

Made a plan with the coodinator to bring him to the Jackson ER this weekend if his symptoms don't improve, though he has no fever.  They are worried about kidneys, etc if I can't get him to drink at least.

He has been so good with the endless waiting while being sick until his transplant time and he has tolerated the side effects of all the meds (feeling icky and tremors and some nausea), but this is taking the stuffing out after finally feeling better.

I've gotten my caregiver badge back...and I had hoped to put that darn thing in a cupboard forever!

 

Carol,
I am so sorry to hear that Mike is having a tough time. It just doesn't seem right, he (and you) have gone through so much. I hope that his doctors/transplant team can get this newest issue resolved...and quickly.
Extra prayers for you both.

Emma

i second what emma said!! thoughts and prayers for you both.xxnatasha,xx

Carol, I am so sorry to hear about the problems with Mike. My mother had mouth sores when she was in chemo treatment, and the Dr. gave her a risne for her mouth and she also drank thru a straw. It seemed to help.

I hope things get back to normal so you can put the badge away!! For Good the next time!!

Debbie

Carol-glad that you are getting seen in the morning. I hope they can resolve this quickly...so Mike can get back to recovery, not fighting pain.

Best,
Emma

As it's been said by many of us; It never ends. Be well.

One of the best things that the transplant team drummed into me after the transplant was reality. Getting a new liver doesn't mean that's it, no more problems. They told me that I had gone through a major operation, a great insult to my body. From now on out, I knew that the aftermath of the transplant was that I was still on the edge and had to take the utmost care to live healthy and take care of myself. I was made aware that the anti rejection drugs had a number of drawbacks; diabetes, higher cholesterol, tremors, possible lymphoma, and more likelihood of developing skin cancer. Considering the alternative was death, I have no problem with side effects from my meds. I'd have been dead 2 years by now, without a transplant. It's more than worth the problems that go with it. Mike and Ron, stay with it and be well.

Hi Carol,
Is he taking Nystatin? Dean was on Nystatin after every meal for a while after his transplant. I don't remember how long exactly. It's a liquid and used to treat/prevent fungal infections.

Hope you get some answers.

Linda

They switched Dean from Prograf to Rapamune three months ago and added Celcept at that time. The Celcept was supposed to be for only three months but they decided to keep him on for a while longer. The reason they gave for skeeping him on it was that his Rapamune level was fluctuating. No problems with mouth sores but his white blood is down a little from Celcept.

He has a biopsy and scan scheduled for the end of September. They are doing a doppler scan instead of a CT scan due to his borderline levels for kidney function. The dye is hard on the kidneys.

Dean has been to the dermatologist for a small bump that comes up on his arm. The last time he had an appointment, they decided not to do anything because it went away but now it's back so I want him to go back and have them take another look. He's been wearing sunscreen while golfing but you know this Florida sun! We are on the "left" coast of Florida.

Hope they get Mike's problem under control soon.

Linda

Is today September 7th? Wednesday, just past Midnight? And did I start this thread 8/25, after 3 days of Mike's mouth sore reaction to Rapamune started with a vengence, and would that be something like 17 days ago????

Poor Mike's mouth has begun to show signs of relief, but he is complaining as much about being miserable. Then starting Monday he was so short of breath and energy he needed help in the shower! Couldn't catch his breath going from the kitchen to the car. Forget driving, he's given that up again.

So today we brought him to the Jackson for a check up. They checked him out and assigned him the room one down from his transplant room!!!! They will do a full workup, kidneys, cardio, and liver to be sure there isn't something amis other than 297 mouth sores! The rapamune is the first suspect, but they will look at his other meds also.

They found his potassium too high. His magnesium too low. His kidney functions not good.

He has NO edema. Has lost 10 pounds during these weeks and is eating almost nothing. He has been good about drinking water...so that's good.

Today was tough. 2.5 hour drive to E.R. Then it took 5.5 hours to get him through the tests, checks, development of a treatment plan, and decision to keep him. Then it took 7 more hours to get him a bed and tuck him into it. He has napped on and off through that...while I just waited. HOw can doinig notihng be so exhausting?

Thanks for listening.

Carol

Post Edited (MamaLama) : 9/7/2011 2:47:34 PM (GMT-6)

Carol, I am hoping that you got a good long sleep.  Please keep us updated on Mike's condition and what they come up with as the culprit.

Hugs,

Connie

Here's an update from ML/Carol, whose hubby Mike is in Jackson Memorial Miami:

>
> Echo cardiogram ok
>
> Abdominal u/s okay
>
> Calling pulmonology in for their opinion to rule out any problem there
>
> So far culprit assumed to be Rapamune
>
> They are also looking negatively at Prograf
>
> Kidney function off
>
> White blood cell count 1.7. Low. They gave him a Neupogen injection. I need to ask about platelets
>
> He is happy to lie in bed napping 24/7.
>
> He ate no B'fast. A small lunch-- 3 spoons if wild rice and about the same of chicken breast. And 8 oz of milk. Low fat as though ge couldnt spare the calories.
>
> They are going to further review his Prograf dose and keep thinking about this puzzle
>
> One intern said they saw something in u/s last month not confirmed on MRI. Today's u/s did not see "something.". Counting the bits of good news!!!
>
> The stupid Internet lists plenty of causes for low counts, fatigue and shortness of breath I'd rather not think about just now.
>
> Continuing to worry.
>
> Carol.
>
> Sent from my iPhone

Hi Carol, I hope Mike gets better soon. My mom got those mouth sores that lasted months at a time when she was on steroids for ulcerative colitis. She also was sick with pancreatic disease at the time and didn't know it. I get the sores too. I hope that they can get them cleared up soon. I don't blame him for not wanting to eat.

My thoughts and prayers are with you both.