Kidney Transplant: Advil, Motrin, Ibuprofen?

AMAZING!! 🥰
My Transplant Connect family is reliably wonderful to me. You all join in to help and I can't thank you enough.
@jennifer0726 Thank you so much for taking the screen shots of the Mayo portal and giving me step-by-step instructions. It's interesting to learn how it's done in Rochester to keep up with the volume. It sounds like that nurse group process works well.
@cmael Thank you so much for the spreadsheet on when to call your PCP and when to call Transplant. That's great to see!
@myfablife Thank you for sharing your positive experience with your coordinator and to never take Ibuprofen. Good info!
@caretakermom Thank you for sharing your similar experience of feeling like the team may be too busy and overwhelmed with the volume. (I get the feeling that I am bothering her when I call).
I am pretty sure that Florida does annual check up visits forever. I am surprised that your Arizona coordinator said that after 3 years, there are no annual check ups at Mayo Phoenix. I think there are additional protocol biopsies, etc after 3 years. I wonder if you are getting good information that the annuals stop at 3 years. At your annual, maybe ask the doctor?

Anyway, my actual medical care at Mayo has been extraordinary so I am grateful that I had the transplant at Mayo and be under their care. Also, I am very thankful to have a team of transplant friends on Connect to lend emotional support and share what we know.... Love you guys!

hello1234 So glad that we all r able to help each other thru our TP journey. I am glad u r on the portal it will keep u informed.
I am going to check with my TP team to and see what their protocol is . I would think if they r refilling Your immuno meds they would have to see u at least once a year?😊💚🌺🌸

@hello1234 A major thing I learned from this thread is how different follow up is at the three Mayo Clinic locations! I wrongly assumed they would all follow the same protocol for a specific organ transplant. At Mayo Rochester kidney recipients have annual appointments and kidney biopsies at 4 months, 1 , 2, 4, 7, & 10 years as standard protocol that I remember. Of course, there could be more if problems arise. They do work with your local providers, but I find that difficult. It seems like some local providers aren’t eager to reach out to Mayo or vice versa. I have chosen to go to Mayo for another serious condition as I know they will work together when I have surgery 5/1/23 to have a mass in my stomach removed. If there is one thing I can say about all the Mayo providers is they are kind. Kindness combined with the quality of care and expertise makes me trust them. I am so thankful.

@jennifer0726 😊
I agree with you. There is no doubt that Mayo is #1 in the nation for a reason! They are definitely the best at what they do.
Is the removal of your mass in May to diagnose what it is or do they already have the diagnosis?

@hello1234 It was a long process from 11/18/22-01/17/24 where they thought it was a cancerous GIST, but FN biopsy at Mayo in Jan determined it is a benign Leiomyoma. Still needs to come out, due size 4.2 cm, location at gastro-esophageal junction and potential for growth and bleeding. They will biopsy when removed to make sure of diagnosis. I met the surgeon and am very confident in his plan. He also plans to do a Nissen fundoplication to reinforce my GE Junction. I love that they will consult with my TX team for meds, etc. I was at Mayo in Nov, Jan, Feb, will be in March for follow up colonoscopy and then May for surgery. Hopefully, will be done after that until annual in Nov again!

@jennifer0726
I had no idea you were going through all these tests and doctor appointments.
One of my favorite things about Mayo is their attention to detail in getting the diagnosis correct. It makes a world of difference.
It sounds like you are in excellent hands and have a comprehensive plan for a successful outcome.
I agree with you that having coordination of care with transplant is wonderful too. Please keep me posted on how things go in March after your test and May after your surgery. It will feel great to have all this done and be able to move forward!
I am happy to hear the diagnosis is benign. It's a shame that you still need it out. Are you having any symptoms?

@hello1234, yes, what started it all was aspiration from severe GERD shooting up my esophagus at night which causes coughing, shaking chills, extreme high fever (104.3 last time!) vomiting, and coughing up blood for a couple days. I am trying to manage with sleeping on a wedge and eating early in day. It will be well.

@jennifer0726
Now I feel terrible complaining about my two root canals this week. I had no idea what you have been enduring. I am relieved that it's been diagnosed by Mayo and you are scheduled for surgery to get this taken care of.
Jennifer, you are my super hero for positive attitude and resilience during adversity. I agree that all will be well. Please keep me posted on what's happening with you and how you are doing. 🥰

@hello1234, at Mayo Az the protocol for checkups are 4 month, 1year, 2 year and 3 year(video only). After that, they expect the local neph to take over maintenance of the patient. Unless there are outstanding issues(CMV/BK recurrences, sudden water retention, etc.) that are kidney related, Mayo Az does not expect to have any more visits with the patient. It's great that Mayo Fl will see the patient indefinitely, it's piece of mind. I have friends that have just reached their 3 year milestones and they have been "released" from Mayo Az, no more follow up-checkups!!
I will for sure ask them about their checkup protocol again at the 1 year checkup.

Please don’t feel bad, @hello1234. Pain, etc is not a competition. The pain you felt was real and important, as were your questions about NSIDS and follow up care. This thread has been informative.
@caretakermom I am so surprised to hear Mayo AZ doesn’t follow you past three years! From what I have read on here the insurance requirements can also be different at Mayo AZ and Mayo FL I just hope everyone gets the care they need to maintain their or their lives one’s transplants. I am thankful for a place to exchange information with those that understand.