Post-Transplant symptoms

My wonderful new liver was installed on August 31 at Ochsner in New Orleans. In two days, I'll be eight weeks post-transplant.

In the last week, I've been frustrated at the pace of my recovery. I have been assured by all MDs that my rate of healing is as good as it gets. My liver is perfectly happy, the scar is healing nicely, the scar from the hernia operation I had to have post transplant is healing well, everything is *** dory.

However....my lower stomach hurts if I stand up to much. Sometimes it hurts for no reason. My yet to be fixed hernia pops out if I walk or stand too much - meaning that I can only do things for short periods of time before I must sit down and push the hernia back in, then rest from the pain. If I stand for more than two minutes, I start to feel nauseous.

I have night sweats every night. I am long done with menopause. When I wake up drenched in sweat I literally must dry myself with a towel and blow dry my hair. The bedclothes have visible wet spots that I must avoid to be able to go back to sleep. Oh, and I have hot flashes day and night.

I am nauseous pretty much all the time, despite taking Zofran. I feel like I have a sour stomach or something - probably due to the Cellcept.

And I am crabby. I am off prednisone, so it is not that. I can't figure out if it is a touch of depression, or anxiety, or it is is a mood change due to the drugs themselves, or if it is just that I am having a tough time adjusting to being a post-transplant person.

I wrote all those complaints just now, and when I read back to myself I feel like a total complainer jerk for saying such things aloud when I should be thankful every single day.

I am extraordinarily happy. Just with a depressed overtone. And I feel guilty about that.

Let me tell you, I am a bundle of fun to hang out with. Snort.

Anyone else with these symptoms?

Susan

Thank you so much, David. It means so much to hear from those who have been through all this. Perhaps I will actually learn patience through this entire event. Ha! Not likely!

I forgot to mention that food tastes gross. My saliva tastes gross, frankly. it is depressing not to enjoy any foods.

I have to get back to my shrink. And like you suggested, I need to respond to my negative thoughts with thoughts of gratefulness. I will work on it day by day.

Susan

Themiz,

Yes, the hernia is really effecting my ability to do things. As David said, the hernia is a major part of my woes. It pops out all the time - just walking through the house to put stuff away, or do any chores - dusting, vacuuming, yada yada. It is very frustrating.

Patience, patience.
Susan

Susan,

Mike had a long recovery and still has very tired days and side problems.

Today's drama is about more skin cancers...more biospies. They are very prevalent in folks who take anti rejection meds. He uses SPF 50 every single day, wears a brimmed hat, puts a long sleeved "fishing" type shirt over his short sleeved shirt even to go from car to store here in FL...the Sunshine State!

After TP he has been hospitalized for pancreatitis, the hernias, the tendon problems, a HUGE systemic reaction to a new antirejection med called Zortress, and has had ugly rash on his scalp that he has used a chemo cream on to clear up.

And he had that darn Hep C for the first 3.5 years post TP.

But, he is ALIVE, active, cooking and reading, and playing golf when he isn't having a tendon repaired!

He is not young, is not sexually active (sad face), has kindey problems and cardiac issues.

And is my miracle. I can't believe he is with me. Many are not.

Give Paul and your son and your chickens HUGS --- bet they are glad you are here too.

Carol

Hi Susan,

Sorry you continue to have complications and pain and if that's not enough, you have to deal with "the jerk" on a regular basis.
Just an FYI...the procedure is an ERCP...here's a link from NIH:

https://www.nlm.nih.gov/medlineplus/ency/article/007479.htm

Tylenol #3 = Tylenol 300 mg and Codeine 30 mg.
My personal opinion is it'll provide more constipation than pain relief...nowhere near the pain relief of oxycodone. It's an ok analgesic for kids and for some mid to maybe moderate orthopedic pain, but for you it's a lousy choice...just my 2 cents.

I hope you get some relief from this stuff...sooner rather than later.

________________________________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

Thanks, Guys. I spoke to my MD who informed me that the biliary stricture - if I actually have one - is not the cause of my pain. Oh. This had not been communicated to me. I assumed the stricture was somehow causing the pain.

MD still has no clue what is causing the pain - but we are now pursuing the stricture issue and not the pain issue. I was unsuccessful in getting him to focus on the pain. I am hoping he has some ideas up his sleeve. I think he is thinking about the untreated hernia.

I was taking oxycodone alone with no tylenol, but here in NY they have prescribed pain medicine with the tylenol included. I much preferred the oxycodone so I could easily adjust the dose as needed. I inquired about the change, and the MD said that he prefers the tylenol 3 that he prescribed.

I still have to do more research regarding comparing codeine (in Tylenol 3) with oxycodone. I do not think codeine and oxycodone are the same thing in terms of the strength. So I cannot yet compare them accurately.

Thank you very much for your help.

Thanks for your kind words, themiz.

I am the Mount Sinai ER - my home away from home. MD wanted me to come in to get to the bottom of what was causing the pain. They now see a blob of "material" somewhere in there that they think is caused by the biliary stricture - but they are not sure. They don't know if it is an infection or what it is, and whether they can just drain it, or do something else or nothing.

I am very pleased to get attention to this matter, despite having to be here. C'est la vie.

Susan

I don't know about you, but when my body isn't working right, a hospital is where I want to be.

Thanks Woofer5. That is some story about your father-in-law. I always loved and appreciated my care at Sinai. My current transplant hepatologist gave me his cell number the first time I met him about two years ago. And before this latest incident, he called me at 11:30pm on Friday night. I don't think he ever stops.

I am home now. They are now saying that the biliary stricture and the blob of fluid are nothing. They think that the problem is the motility of my gi tract, caused by the use of opiates. So I have to get off the cycle of pain due to the motility issue then taking more opiates to kill the pain, this slowing down my digestive tract even further.

My new liver is happy as a clam. : )

I am in pain now so I will sign off.
Susan

"It is hard to believe that one can get used to pooping themselves in their own bed, but trust me, one can."

Anyone who used lactulose has experienced this. It's one the worst feelings I ever had.
For 4 years.

Hey Susan...glad you're home and good to know you're on the mend...although it's always slower than we want.
As far as your gut...I'm sure you have your list of lead suspects, but the hospital food should be right up there...man, that stuff will kill you.
I guess the jello's safe though...maybe...lol.

Gas pain is horrible and can be incredibly painful. If it's still an issue, I'm certain you could take simethicone...it's not absorbed from the GI tract...and I've never heard of any side effects. It's simply a surface tension reducer...allows the gas to combine into larger bubbles and makes it easier to pass...one end or the other...faster too.
Anyway, bounce it off your doc. It's cheap, safe and effective.