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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14, 2024 | Replies (1677)Comment receiving replies
@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK
Replies to "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..."
@rosemarya @colleenyoung Well, I got the expected call from the transplant department at MGH today regarding my creatinine. They are going to cut my tacrolimus prescription in half -- currently taking 3, twice a day, to taking three once a day and taking sirolimus also. They want me to go for another blood test on Friday and start the new prescription on Saturday. I guess they will alter it again before my surgery. I hope this doesn't wreak havoc with our vacation plans with our son. I would be crushed. How often does a young (well, not so young anymore, he's 36) man ask his parents to go on vacation with him? That's just the way he is.
I really feel good that they keep such track of me, as I am sure they do with all transplant patients, but they make you feel like you are the only one important. My surgeon is like that too when I see him.
JK
@contentandwell, It is a routine practice to have labs additional labs anytime there is a medication change or a dosage change. And, unfortunately, the timing can be inconvenient. Your surgeon is taking good care of you! I think that if you tell him about your travel plans, that the two of you can come up with a workable solution that is agreeable for both of you.
My immuno meds have been at the same dose for a long time. I'm guessing 4 or 5 years. I take them twice a day instead of once.
Enjoy vacation! Give son a hug.
Rosemary
@rosemarya Rosemary, they really do manage to work things out. I usually do my labs, currently weekly, on Mondays but because we will be in Maine next week I am doing them Friday and Friday - we plan to come home on Thursday, both son and daughter have to leave then. I have to leave for a totally different appointment - podiatrist.
While writing this I got a call from my transplant team. Tomorrow I go for labs and then as of Saturday I start a different regimen for my meds, decreasing Tac and adding Sirolimus. I told the nurse who called, and who has been positively great, how much I appreciate them. She seemed very pleased to have heard that. While I was managing the front office in a nice four-star inn here I learned that people need to express appreciation more. Most of the time when we heard from people it was with a complaint so it was always really nice when someone dropped a note saying how much they appreciated our service.
The vacation I was concerned about is our vacation in October. We are leaving here on Sunday, September 30, and getting back on Wednesday, October 11, so that will be a fairly long time away. Prior to the last med change they had decreased my labs to monthly so hopefully by then I will be back on a monthly schedule.
JK
@contentandwell, Take comfort that the labs and dosage changes are 'routine' 🙂
I completely agree with the need to express gratitude. A smile and a thank-you can change someone's day.
I appreciate you, too.
Rosemary
@contentandwell You "pay it forward" in a remarkable way! I'm so glad that you participate in Mayo Connect! Teresa
@contentandwell I'm glad that you can look back on it and see how everything unfolded. Hindsight is great - Teresa
@contentandwell - I'm back to sifting through emails because I'm stuck in my office containing my dogs while my tile gets washed and grout resealed/colored. It will look like new!
Is your knee replacement for the other knee or are you getting a revision? It is almost more important to have faith in your doctor than the implant they are using because if you are not confident in their skills your recovery will not be as successful.
Your daughter is beautiful and looks very happy. If mine ever get married I'm not guessing it will be very traditional either. Good for you for celebrating with them and not pushing your wishes on them!
@rosemarya - I'm aware that avoiding infection during a joint replacement is a big concern. Honestly, my thought was how can you have surgery after a transplant but it sounds like it is feasible. Can't believe how the post-transplant team follows you but I'm so relieved.
@rosemary - well I'm not so sure we are going to want to travel except to visit our kids. My husband has done so much travel with work that he has no desire to spend more time in airports and on planes. Honestly, I would be a little afraid to leave the U.S. after having a transplant. I don't have much confidence in healthcare in other countries. Do people leave the U.S. after having a transplant?
Connect
@contentandwell, I absolutely agree with Rosemary. Your participation on Connect is volunteering and paying it forward in a significant way. Your contributions do not go unnoticed by members and the moderating team alike.
THANK YOU