ANY SUGGESTIONS FOR GETTING READY FOR IMPENDING TRANSPLANT

[TaffyTwoshoes27]

I believe I reported the other day that I have signed up for the hep C transplant study at my transplant hospital. I have been told by the study chief transplant physician that it could be three days or it could be 70 days before I am called for a transplant. I have not been as focused on learning more about transplant since I thought I was 4 years away.

I have a week or two before I'm actually put on the list. I had to change my blood thinner medication as well as stop taking an acid reflux medication they said is contraindicated with the anti-rejection drug.

Then, it could be any day or week when I will be called. I have already established a person that will let me recuperate at their house and take me to my subsequent tests and appointments at the transplant hospital.

I thought that I would put this out to the kidney community and ask if there are any suggestions from those who have already had a transplant and any advice they have for the first few weeks after transplant. I am open to any suggestions, including what to pack, do I take my own medications with me to the hospital, any financial assistance or applications I should be filing prior to entering the hospital.

BTW: I have been told by the hep C study team that they have done nineteen liver and/or kidney transplants. 5 people have already been released from the program. They have had no problems. In fact, they had one gentleman that never contracted the hep C. They said usually you will contract the hep C within two to three days after transplant and they will begin giving me the study medication, which in this case is Epclusa. The hep C is usually cured within 3 months. It has a 97% success rate. They have other hep C drugs they can use in the event the epclusa does not work for my particular case.

Again, any suggestions will be appreciated.

[WYOAnne NKF Ambassador]

What to pack: They get you up and walking right away. I brought along loose fitting clothing, like sweats. You will not only have an IV but also a Foley catheter. Slip on shoes or slippers are also helpful. I did not bring any medication with me. At first after surgery you will be on an IV and medications will be through the IV. The hospital should know all of your insurance info, but bring insurance cards along with you.

Immunosuppressant meds make you heal more slowly, so expect some pain when you do go home. The first couple of weeks you will have labs ordered 2-3 times a week. Since you are in a study they could have a different lab requirement. Please know that it takes your body awhile to adjust to these meds. Remember to report any out of the ordinary symptom to your transplant team. Expect some adjustment of these meds. They had to change my dose of these meds several times. I had issues with tremors and diarrhea. After reporting this, my dose was lowered and things got better.

I am now 20 years post transplant and am doing great! I would be glad to answer any questions you might have.

Take care.

[TaffyTwoshoes27 in reply to WYOAnne]

Thank you so much. Great suggestions!! Keep that kidney going strong!!