Liver transplant - Let's support each other

@musicman2019 I don't have any of the listed side effects of TACROLIMUS. My labs confirmed I have extremely low T that will be treated by hormone shots this month. I read it is common with male transplant recipients.

@benlam11 Congratulations on your transplant, it's such a relief to be on the other side.

Did you have any mobility problems prior to transplant? Your fall sounds very unusual. What did your doctor say about it?

I have not heard of people getting bedsores in the hospital but I am not at Mayo. Were you able to get up and be somewhat mobile while in the hospital, and how long were you inpatient?

@wildcat The dreaded lactulose! We make the best of it. My daughter had a way of pronouncing it in a funny sing-song way to get me to laugh, and after my transplant, while in the hospital, if I complained of any discomfort my husband would exclaim "NO MORE LACTULOSE" to give me something to laugh about.
JK

@musicman2019 I was on tacrolimus after transplant and my creatinine started climbing. I was told to drink 80 - 100 ounces of fluid a day but that did not help much so they switched me to sirolimus. I still drink all of that water but I no longer have a creatinine problem. They really keep track of me, very thoroughly.
I also started having bad diarrhea while on tacrolimus. I was hoping with the change to sirolimus that would go away but it did not. I have come to realize that I now am lactose intolerant. I believe the tacrolimus must have triggered that since it happened right after starting tacrolimus.
JK

@musicman2019 originally I was on cellcept, tacrolimus (prograf) and prednisone. A few months in they found the cellcept was causing a low white blood cell count and eliminated it and the prednisone. Now I take 1mg of tacrolimus every 12 hours. I have no side effects from it and my liver function is great.

@musicman2019, Welcome to Connect. I am a transplant recipient, and I have been taking tactolimus since my simultaneous liver and kidney transplant in 2009. I have needed only minor adjustments to my dosage in the early years. I have been on my current dosage for the past 4 years. My labs are drawn at 3 month intervals, and it includes a test that provides information about the level of the prograf/tacrolimus in my blood. There is a therapeutic range that my transplant teams have assigned to me. It is necessary for the level to be high enough to suppress the immune system, and also low enough to be least harm to the body.

Here is a list of side effects for tacrolimus.
https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/side-effects/drg-20068314
musicman2019, Are you currently taking tacrolimus? Do you have a transplant, or are you considering a transplant?

Rosemary, Volunteer Mentor @rosemarya This is Ben Lambert and I just spent a couple of days in the hospital and they discovered my medications 2 - 25 mg metoprolol and 2 - Furosemide pills were creating the problem. So now I'm free of all Blood Pressure Medications and feeling much better. Just in case someone else goes through the same episodes - call your coordinator nurse and get on top of it quickly - not like me who waited several days thinking it would go away. The Mayo has been incredible one of their home outside providers - not so much. So once you leave the Mayo orbit (even though Mayo allows these sales people in), be cautious.

@benlam11, You have brightened my day! This must be such a relief for you to be feeling better. I am sorry about the hospital stay, but I am happy that the problem is easily resolved. Our medication do play tricks on us sometimes, especially in the beginning.
I think that it is safe to say that you have learned, and shared, a most important message with all of us: "Call your coordinator nurse and get on top of it quickly". If I hesitate hesitate or have questions, my husband always insists that I make the call! I am fully aware that many of our local health care professionals don't have the full ability to handle some of our special transplant care. After all it is a highly individualized and specialized area of expertise and training.
You are wise to have learned to advocate for yourself. I find that I often teach my local health providers about post transplant life. Just a couple of weeks ago I shared my scars and story with a new nurse at my PCP's office appointment. I learned that she had assisted a surgeon for years in surgery. She was impressed with my beautifully healed Mercedes scar.

I have had several hospital overnights for observation, usually if my temperature rises quickly. I am quick to produce my Mayo Transplant 24-7 phone information when I arrive.

Benlam,
How are you feeling now? Is your balance better, are you able to walk without a wheelchair?
How did you end up in the hospital?

@benlam11 I am relieved for you that they found the root of your problems. Medications are such a double-edged sword -- they are good for certain things but can cause other problems. I was on Furosemide for a while, near the end of my pre-transplant time and it didn't cause me a problem but a number of other medications did, particularly one that if I remember correctly was for nausea.

That's great that Mayo has been so good for you. I feel the same way about Mass General. From what I have heard most of these transplant centers have really excellent teams and are very caring. There are a few that operate at less than expected but overall most are quite good. I know at this point that if I ever need hospitalization I will head right down to Boston to go to MGH.
JK

I am a transplant patient too and I too am interested in how you came to be in the hospital. I was in the hospital at Mayo for 6 months after my transplant with complications. Let me know about your transplant experience( all of you in this conversation.)
Christine
Christine

@CHRSTINELOUISE, Six months in the the hospital must have been quite a trial and then afterwards as well. I hope you are doing well now. Transplant experiences are so different. It's hard to compare cases. I had a rejection scare three days after discharge that put me back in the hospital for three days on IV TACROLIMUS. I am currently 13 months +/- post OP. My Transplant clinic Nurse lowered my Magnesium to 200 mg. Twice a day, and wanted to discontinue Urso, but the doctor wanted to stay with the protocol. I wish you all the best. My hospital was selected for me on a first bed avialable protocol. I did how ever end up at my first choice.Tim