Kidney Transplant: Advil, Motrin, Ibuprofen?

@jennifer0726 😊
Thank you for sharing your positive experience. I wish I was able to portal a "transplant nurse group", that would solve my problem. But at Mayo Florida you are assigned a coordinator. (Occasionally she is out and I speak with another coordinator and the "substitute" nurse that I get has been caring and knowledgeable). Which Mayo branch uses the nurse group concept instead of assigned?
If you were me, would you just keep your mouth shut and try to work around it....or try to get reassigned? I want to avoid causing any bad feelings, but I also want to receive excellent Mayo care too. I get jealous every time on Mayo Connect my fellow transplant patients recommends to call transplant. I normally avoid doing it.

@hello1234 I am so sorry you have this experience with post transplant care. Maybe at your next visit or contact you can innocently ask what is the best way to contact someone for help when you have a medical question that is urgent like you had this week. I think asking directly puts the the ball in their court so to speak. Explain your local Dr doesn’t have the answers to transplant specific questions. It’s worth a try. I am at Mayo Rochester. Hugs to you my friend!

@hello1234 When you send a message in the Mayo portal this is what I do:
Click messages, then Send a message, then Ask a medical question, then Non Urgent or care Plan question, then scroll to the very bottom of list of Drs to Rochester Kidney Transplant Care Team or Rochester kidney Transplant Nurse. Doesn’t your team contact you following labs etc or is it just the one Coordinator? I only had a coordinator pre-transplant.

@jennifer0726 😊
Thank you so much Jennifer for always being so caring. I really appreciate all of your support and advice. Hugs to you too...I appreciate your friendship very much.... Unless you had a transplant, I think it's hard to understand what we go through regarding our concerns and questions. THANK YOU!!

@jennifer0726 Thanks so much for the screen shots of the portal!! You are awesome.
Unfortunately, my portal only offers my designated assigned nurse's name. I would love a group nurse transplant address, but it's not the way it works in Florida.

Hi @hello1234, we did have a post transplant coordinator assigned to us and she was very good at responding. But lately she has been either very busy or "weaning" us off, since my hubby will be 1 year post transplant soon. I like her because she is familiar with hubby's medical situation and very responsive to our requests. But the 2x we got random post transplant nurses who called to give us feedbacks on lab reviews because Mayo is still following hubby re CMV. I had questions on one of the labs and the nurse just said "I don't know" you can ask when at your 1-year appmt!!! Like she couldn't wait to get off the phone so I didn't feel comfortable asking more questions.
At your Mayo Clinic in Florida(?), do you continue to have annual checkups with them after 3 years? After 3 years at Mayo Az, they do not recommend anymore annual checkups and you're "kicked to the curb". They are overwhelmed with volume and impossible for them to follow patients indefinitely, I'm told by our nurse coordinator.

I was told many years ago that nsaids, Ibuprofen like Motrin, Advil etc is hard on the kidneys. After my transplant, I was told again that Tylenol is the only pain killer that I should take, unless my doctor makes an exception.

This is what Ireceived from my transplant team several months ago.

Hi hello1234,
My coordinator is GREAT she always answer my questions especially when it comes to meds, they know what will interfere w/our immunosuppressant and if she does not know she will refer to the Dr. I did ask about Advils ibuprofen and was told NEVER take them b/c u would go into kidney failure and I am a LTP pt.
Maybe u could find another coordinator who would be helpful to u. PCP r not that knowledgeable on TP I am in the process of finding a PCP who is familiar w/LTP pts. my TP team is referring me to one right now..💚 they have already called me and I am sch.
Good luck w/your RC’s and I hope u feel better soon and can take something to relieve pain. Tylenol does not always help me. I have taken Robaxin and has helped me.
😊💚🌼🌺🌈☀️

Well, I was told that my TC would follow me for a year. But that is just for transplant specific meds and issues, not total med management. And some of the meds the TC says I can take interact with other non TC meds like Tramadol, Trazodone,, and Gabapentin, and any anti-depressant or anti-anxiety meds a doctor recommends. So, I did start working with Stanford Pain Management and then my PCP started to respond to me for a referral to PT/OT in home. I might have to get a new PCP who is willing and trained to listen, and give me total med management. Luckily I also have a 2nd opinion Neph locally who I spoke to and who is willing to help me with med mgmt for now. It is horrible if you feel like you are getting the run around with docs or not getting responses. I felt all alone for awhile. And I finally got my TC Neph to call my PCP so she will step up and help me more with Tramadol refill and hopefully med mgmt in time. Great your tooth pain is easing. Take care and be well, BB