Post Transplant Symptoms

@newliver1 Hi, and welcome to Connect. How is your husband doing now? What has the doctor had to say? I have had frequent diarrhea ever since being on immunosuppressants. I spoke to the pharmacist at the specialty pharmacy where my immunosuppressants come from and he said that about 40% of the people on immunosuppressants do have diarrhea! It has taken me a while, but after quite a long time (my transplant was in September 2016) I finally managed to discover that the diarrhea is actually from lactose intolerance which was apparently triggered by the immunosuppressants since it happened right after getting on them.
You might suggest to him that he could try cutting back on foods that contain lactose to see if that could possibly be responsible for diarrhea.
JK

@benlam11, I want to drop by and check on you.
You posted this while I was off-line for my annual evaluation for my liver and kidney transplant. After my transplant, my energy came back. I was extremely blessed because both organs began to work immediately. For me it felt as is someone had flipped a switch inside my body. I was weak, and it did take some time for my muscle mass and endurance to catch up. For me the pain was easily managed by pain medications for the first couple weeks. I was a walker and hiker before all of this occurred, and I was able to get back in shape to go hiking in 9 months (shorter trails) I am here if you want to ask anything about it.

How are you doing?

Can you tell me more about the post-transplant medications?

I am on a course of steriods and cellsap. The medications are playing havoc with my sugar levels -- which in turn means i have to inject and use more of it.

@twocatmama, I want to share this because I think it will go well with what @luckonetj has to add.
Transplant Medications 101: Q&A
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-medications-101-qa/

@twocatmama I can tell you about my transplant medications, but there are others. Initially, I was on tacrolimus (Prograf) and CellCept. They discontinued the CellCept after a short time and then I was just on tacrolimus, two times a day. That was affecting my kidneys so they changed me to sirolimus which helped with my kidneys. I still have to drink about 80 - 100 ounces of water/fluid a day to keep my kidneys flushed. So far, so good.
The biggest effect I have had from the immunosuppressants is diarrhea. It started right after I went on them. After struggling with it for a long time (about two years) I discovered that my problem was from lactose intolerance. I feel fairly certain that the lactose intolerance was triggered by the immunosuppressants though, due to the timing.
With both tacrolimus and sirolimus they tell you to take it either with food or without food, but to be consistent. It finally dawned on me that since it was obviously affected by food that maybe if I took it without food I could take fewer pills. I was being tested frequently and let my transplant center know that I wanted to do that so they tested me weekly for a short time to determine what the correct dosage of sirolimus would be when taking it without food. I went down from 4 mg once a day to 2.5 mg once a day.
When you are on immunosuppressants there are certain food restrictions. You cannot have any grapefruit, pomegranate, and one type of orange -- I think it's Seville. Of course after transplant alcohol is prohibited also. There are many herbs that are not allowed also, the ones that are bark or root I think, and absolutely no echinacea or anything that is supposed to contribute to immunity since the immunosuppressants are decreasing that so that your body does not reject your liver.
I've tried to cover everything here but I may have missed something. Please feel free to ask any other questions that will help you or your family member.
JK

@rosemarya this article was very interesting. I'm glad I only have to take 1 pill for antii-rejection (tacrolimus) every 12 hours. The septra I take only Mon Wed and Fri. One pill on these days for the next 5 months.

Informative article, thank's Rosemary. My one year anniversary is tomorrow.

Thank you all. Before my family member gets to the transplant point, I want to know all the good and bad issues. Of course, I know that only people who had successful transplants are in this site sharing wisdom.

@luckonetj, Tomorrow is a perfect day to celebrate a 1st year Transplantiversary! Hope you can find an opportunity to make it a special day!
Do you remember when you got the Call? Would you like to share some memories of that day?