Upcoming transplant seeking advice

[Bax509]

After many delays, a family member has been approved to donate a kidney. Surgery scheduled in June. Have a couple of questions if anyone has time. Pros/cons Myfortic vs. Cellcept? Also - anything you wish you'd known or done before, during and/or after transplant?

[LGomez17]

Congrats on your upcoming transplant. Next month will mark 5 years for me. I currently take cellcept without any problems. One thing I wish I knew before was the discomfort I was going to feel with my stomach getting back to normal after surgery. I had a lot of cramping and pain in my bowels during recover in the hospital. The doctors said it was normal, but honestly that felt worse than the actual surgery, at least for me. The surgery itself was a breeze for me and my wife who was my donor. Just follow what your healthcare team says and you’ll be fine! Don’t overdo it and allow your body the time to heal.

[Herkidney]

Congratulations! As far as medications go, your transplant team will determine which medication works best for you. My team started me on Cellcept and then quickly switched me to Myfortic because the first medication didn’t agree with me. So, you may or may not have a say in which medication you prefer.

Stay positive, strong and healthy for your upcoming transplant. Some immunosuppressants prohibit you from eating certain foods such as grapefruit (and other foods) - so if you like grapefruit, go ahead and eat some prior to surgery. I know it sounds silly, but it’s true - you can’t eat some foods while taking certain medications. Check with your nephrologist and transplant team first though! Best of luck!!

[Hidden]

Hey Bax509, congrats on getting a donor and hopefully everything goes well for you . I am not too familiar with the two medications you are referring to but if you google those two verses each other there is a lot of information listed. Here is one link for you. clinicaltrials.gov/ct2/show... have been taking Teva-Mycophenolate and Tacrolimus plus Prednisone. I have had no reactions to the first two drugs but because of the prednisone being a steroid it has given me high blood sugar and so I have developed diabetes because of this. I would do your research and pick your nephrologist’s brain with all the questions you may have. Remember everyone responds differently to different drugs so what works for me may not be a good fit for your system and yet unfortunately sometimes you and your doctor only find that out through trial and error. Like what was said as well in another comment give your body time to heal if it takes a bit, don’t get worried some people heal super quickly and others not so much. When I got my first transplant I was only ten and it took me only nine days before I was out of the hospital but when I got my second one it took me almost two weeks and then it took longer at home. Once you get your transplant your doctors will watch you like a hawk for at least the first three months and yet they will continuely want you to get lab work done and adjust your meds depending on your lab results. Best of luck to you and I truly hope everything goes well for you. If you have any further questions or would like someone to talk to as you inch closer to your transplant and through your recovery who has experience please don’t hesitate to message me. Blessings.

[Hidden]

Congratulations! Reading this blog is helpful. In regard to your question about Cellcept vs. Myfortic. I am on the generic of Cellcept, Mycophenolate. It has been rough on the intestional system. Stomach and diarrhea. I am on a very low dose. It is called a prednisone sparing drug. Meaning, you won't need as much prednisone. However, I would have pushed to have my medications reduced before I actually did. I wished I had known you cannot take Azathioprine with Allopurinol, because it will cause Anemia and Leukopenia. I would stand my ground and not be scared or bullied into taking a medication I had a bad feeling about. I WOULDN'T HAVE WORRIED SO MUCH!

[Eyak1971]

As others have said - congratulations! I am taking myfortic but my doctor failed to test me regularly for an overdose and I I had adverse reactions with hearing loss which was temporary. Only found out when emergency doctor ran the test. Be prepared for stomach issues because of medication but they will get better with time. My doctor had a tendency to downplay the viruses I would be susceptible to due to a low immune system due to antirejection drugs so be sure to be honest with your doctor about any worries you may have. A good doctor will understand and be upfront with you.

[DexterLab]

Congratulations again. It is a true life changing event. Donors are amazing.

I am on tacrolimus and CellCept. No Prednisone. That is the preferred starting point at my transplant center. I am also on Pepcid to keep the stomach effects in check. I was out of the hospital in 4 days. I got it done before dialysis. I have PKD and stuff that was sideways for 2 decades was better before I got out. You will be seeing the transplant folk often after you get out, and blood tests will show how well the immunosuppressants are working. That is also the time to engage them on any side effects and if a medication change is warranted. Good luck.

[LisaSnow]

My best advice is be compliant with your medications and be patient. Medications take time for your body to get used to so side effects are expected at the beginning. However, they are extremely critical in instructing your body to accept the donated organ as your own. Be patient with these temporary side effects and ALWAYS take your medications as instructed. Keeping an open communication with your care team is important too. Good luck and we look forward to your excellent outcome!

[Sdey22]

Hi there! It's wonderful news that someone in the family is a match for you. Best of luck to you and to your donor hero too.

Mycophenolate is an immunosuppressive drug available under the following different brand names: CellCept, Myfortic, and MMF. Your transplant team will monitor closely, in case any tweaks/changes are needed.

Please don't hesitate to reach out for any questions you may have, as you embark on your journey of Transplantation.

Best wishes & take care.

Sam.

Mentor, The Transplant Journey, Inc.

e: [e-mail]

w: transplantjourney.org/

FB: facebook.com/thetransplantj...

[pops81]

Congratulations on your upcoming surgery. A kidney is an incredible gift; my sister loaned me one of hers. LisaSnow said it better than I could about the meds. Absolutely key to success is taking the meds as prescribed, and the second most important is hydration. Stay active right up to admission, and as soon as your medical team clears you to get up - start walking. Get help and start walking the hospital halls or take baby steps around your room - but get active. Getting up and moving about will help you recover quicker and stronger. Taking my meds as prescribed, communications with my team and hydration, hydration and more hydration has worked for me for 40-years (40 next month). Stay strong

[Kbristow]

Take your meds as directed. Enjoy your newfound energy and appetite. Keep up the safety protocol that we all started during the pandemic (wash hands often, wear mask in crowded areas and on planes, stay away from foods risky of food-borne illnesses. You can also check out this resource from patients for patients about their transplant experience before and after surgery: esrdnetworks.org/toolkits/p...

Lastly, document every moment of surgery week. Take lots of pictures. Jot down how you feel, thoughts you have, people who visit (assuming they're allowed). I wish I had taken more pictures, even seemingly boring ones because the days were filled with surreal wonderful memories for me even if I was very sore physically and being woken all the time by nurses and providers. I also gave my nurse a disposal camera before being wheeled away to take whatever pictures she could during surgery. When I developed them, I saw pictures of my new kidney before it was transplanted into me. I'm five years out now and feeling incredibly grateful every day for my donor.