Issues after transplant

Hi, everyone! We are from Brooklyn, NY. My daughter is 16 and she had a liver transplant 4 weeks ago. She'd had autoimmune hepatitis and primary sclerosing cholangitis for 5 years before transplant. Liver doctors said she should feel better and better every day after surgery but it is not what is happenning. My daughter is very weak and dizzy and her legs are shaking a lot sometimes, and she does not walk too much, she has a lot of gas and pain aroun belly button. Her liver enzymes were good after surgery but one week later they started climbing up. We got into emergency room last week because of the severe pain in her belly and ear ache. They said it was probably gas and tension headache which went away after pain medications. The sonogram showed that everything was normal inside her belly and no abnormalities in her liver but her liver numbers are high: Alt: 221, Ast: 41, Alkaline phosphatase: 139 but bilirubin is good: 0.8. They are saying it could be from Bactrim so they discontinued it and started her on Mepron. Liver biopsy is scheduled for next week. She had one before when she was still in the hospital and it did not show anything wrong. The main concern now are weakness and inability to walk, pain in her belly which she feels is not because of incision but because of gas. Did anyone have these symptoms or something similar after transplant and how were they treated? I would really appreciate your advice. Thank you

I had my liver transplant one year ago and had many of the same symptoms. I had some episodes of belly pain post-op, especially when i had an infected common duct. I lost weight (180->120 mostly pre-op). I lost strength very quickly and had to use a walker for several weeks post-op. About a month post-op I tried to lift 2lb over my head and it felt like fifty. Walking out in the hall at least once every day with the walker and/or the physical therapist with a strap around around my body helped me significantly.

I am 67yo and have been a devoted tennis player but I'm only now getting back on the court after many pvt. trainer visits.

I have uploaded some important items to know about the transplant process which I posted here some months ago:

29-AtLastTheLiverTransplant.docx (149 KB)

Thank you for reply, EAD3!

I've read your attachment and it is almost what happenned to us in the hospital except kidney dialysis. It is reassuring that you feel better now. I hope my daughter will be able to get better soon. Our appointment is next Wed. We'll see, maybe everything is not so bad.

I also was experiencing some pain in my stomach after TX so they gave me prilosec which helped. The cellcept can also cause stomach pain.
Hope this helps

Catherine J Lopez said:

I also was experiencing some pain in my stomach after TX so they gave me prilosec which helped. The cellcept can also cause stomach pain.
Hope this helps

daisy123 said:

Catherine J Lopez said:

I also was experiencing some pain in my stomach after TX so they gave me prilosec which helped. The cellcept can also cause stomach pain.
Hope this helps
Hi, Catherine! My daughter is taking Prilosec but we haven't seen any relief so far

Hi Daisy
Your daughter has been through so much, and I can’t imagine your stress!

I am 2 years post transplant and it has been a loooong recovery.

At four weeks I was just out of hospital and was dizzy, nauseous and very weak as well. I had a lot of abdominal pain as everything had to learn to work together. I lived on toast. Other patients lived on cereal. Any food that can be kept down is good as the insides adjust.

After not eating for a couple of weeks, I had lost a lot of muscle mass as well. Any narcotic pain meds, which I still needed due to pain at night, cause constipation. Weaning off of these in time may help, but pain management is important. The anti rejection drugs also cause stomach and other pain. They are hard to get used to. I was on antibiotics for a year after transplant which threw the whole digestive system off as well.
Note: My hair started to shed at 4 months due to the meds and trauma to the body. It does grow back and if on Tacralimus, some people get a much thicker head of hair. I did!

I learned that when the doctors say you are doing OK for the first six months/year, they really mean that there is no sign of leaking, rejection or infection. These are serious complications that they are monitoring closely.

I was also withdrawing from. prednisone, and other meds from hospital. Prednisone withdrawal is also very hard on the body! People can experience pain and feel very down.

It is a long recovery with good and bad days! The new liver is cleaning up the build up of years of toxins. It took a year for my ALT and other enzymes to come down to normal. As long as they are generally headed down, it is good.

I know a year is an eternity at 16! Sometimes it will feel like 2 steps forward and 1 back.
I wish for your daughter an overall smooth recovery.


Dear Daisy123 (and Ruby),

My experience has been very similar to Ruby's, only I had a few of the more serious complications. It did take a year before I felt the new liver was doing me much good. However, as young as you are, I would expect you to perceive improvement much earlier than a year. Many people walk out of the hospital two weeks post-op feeling well (or almost well.)!

The tremors (shakes) you are experiencing are most likely a common side effect of the Tacrolimus (ProGraft).

Stay strong, and as my hepatologist at Mayo said, "Don't slow down!"


Dear Daisy123,

Your post is moving because the average person has no idea of the changes and challenges we go through with a liver transplant. Your story reminded me of the same kind of things I experienced when I got my liver transplant 2.5 years ago. Gas and intestinal trouble are things I had. The culprit was two-fold. 1) Magnesium Oxide (which I imagine you take post-transplant) is a powerful, gas-producing laxative, but is a needed mineral for your new liver. 2) I was on antibiotics for six months, and they can produce these symptoms. Bactrim was hard on me and my doctor moved me to Mepron, which was an improvement. My doctor had me on Pantoprazole acid-reducer from day one. I still take it daily.

It is hard to break the digestive distress cycle when you are taking these two medicines. If your doctor says it's okay, get a high quality probiotic that is mostly Acidipholis and Bulgaricus. These are natural bacterium that help replace the normal flora in your intestinal tract. It helps get your gut back to normal.

My fatigue was very bad. Then, at 5 months, I steadily began getting stronger and my endurance came back. My enzymes were still elevated, and my doctor had me on 8mg of Prograf daily until I got to six months. He adjusted the Prograf down when my Liver Function scores started improving. Prograf is suppressing your immune system, so it can make you feel not well.

It gets better, but with so many things wrong at the same time, it can make you wonder whether transplant was worth it. At 2.5 years, my liver scores all in the normal range and works like a superstar. The only things I take for my liver now are Plavix and 2mg of Prograf daily. I take non-RX iron and calcium, as well. I look at pictures of myself just before my transplant and can see how far I have come. You will, too.

I just remembered another thing a physical therapist taught me that helped with the gas and helped prevent surgical adhesion. When your abdomen is healing, intestines can adhere to the healing tissue. She had me daily massage my belly in a round, counter-clockwise rotation (looking in a mirror), with gentle pressure. It moved trapped gas and the action keeps internal organs from adhering together or to the abdominal wall.

Hang in there. Don't try to push your healing along. If all you can do is sit in a chair or lie down some day, well, that's just okay. Try to get out and walk. Get some sunlight, which helps with synthesizing vitamin D in your body. Take it easy. Go a little further as you feel you can. I got some green elastic exercise ribbon at Dick's Sporting Goods, and did arm curls and stretches using the resistance to increase my strength. I did a little each day. You will get back to your normal strength and endurance. Just be patient with yourself. My complete recovery took a full year.

Thank you, Ruby, Paul, EAD for your support! After the surgery it feels overwhelming to deal with all these issues. We do not know how serious the symptoms are, so we call the hospital every time and the doctor on call is trying to help us. Also, our liver doctor decided to do CT scan, endoscopy and colonoscopy to rule out all possible causes of pain and discomfort. I understand it takes a lot of time to recover from this kind of surgery, and your responses are really valuable to us because they make us feel more confident about the situation. I really appreciate your effort and time to help us.