This and That and Talk - My Transplant

U are AWESOME
I hope everyone in your life knows u are AWESOME. Thank u. I just can't take the numbness in my feet and legs does not go away. I will try the sirolimus will let u know the progress. I will go to that web site u posted.happy Wednesday

Hi, @jackie421blfdgurl. It is good to hear from you!
I'm sorry to read that you had a reaction when you were taking sirolimus once before. I can understand your nervousness. However, it sounds like your liver doctor has a plan to monitor your labs every week so that she can carefully monitor the level and monitor your liver enzymes and any side effects (like the mouth sores). It will be your responsibility to contact her right away if those side effects appear. That way the dose could be adjusted before any problem occurs. She is aware of your previous reaction, isn't she?
Jackie, Sirolimus is a good medication - that is why so many transplant patients are taking it. Each one of us reacts differently to the meds and our transplant doctors are going to work to find the one that works best for each one of us. I think it is a good thing that she is carefully watching the blood pressure meds since she suspects it is causing your swelling.

I want to re-connect you with a discussion where you joined toward the end of the conversion. If you have not already done so, Please look at what others have shared about sirolimus from their experience.
- Do any transplant patients here have experience with Sirolimus?
https://connect.mayoclinic.org/discussion/do-any-transplant-patients-here-have-experience-with-sirolimus/
@gratefulbob, @charlie5454s, @cehunt57, Do you have any experience with Sirolimus that you would share with @jackie421blfdgurl?

Hi, @jackie421blfdgurl. It is good to hear from you!
I'm sorry to read that you had a reaction when you were taking sirolimus once before. I can understand your nervousness. However, it sounds like your liver doctor has a plan to monitor your labs every week so that she can carefully monitor the level and monitor your liver enzymes and any side effects (like the mouth sores). It will be your responsibility to contact her right away if those side effects appear. That way the dose could be adjusted before any problem occurs. She is aware of your previous reaction, isn't she?
Jackie, Sirolimus is a good medication - that is why so many transplant patients are taking it. Each one of us reacts differently to the meds and our transplant doctors are going to work to find the one that works best for each one of us. I think it is a good thing that she is carefully watching the blood pressure meds since she suspects it is causing your swelling.

I want to re-connect you with a discussion where you joined toward the end of the conversion. If you have not already done so, Please look at what others have shared about sirolimus from their experience.
- Do any transplant patients here have experience with Sirolimus?
https://connect.mayoclinic.org/discussion/do-any-transplant-patients-here-have-experience-with-sirolimus/
@gratefulbob, @charlie5454s, @cehunt57, Do you have any experience with Sirolimus that you would share with @jackie421blfdgurl?

HI Rosemary this isJackie checking in. How are u? Well my ankles are swollen from time to time, Saw my liver doctor a week ago, she is changing my blood pressure meds cause this pill u can
have swollen feet or legs, as far as the numbness in feet and legs she is taking me off tacrolimus
and putting me on sirolimus which I am nervous that is the pill I was n from hospital and ended with mouth soars in my mouth for 23 days she took me off and the soars cleared up.but I need blood wk once a week to test the numbers on sirolimus, and it has a lower protection for the
surpressed immune. oh well.just wonder if anyone else is experiencng this. Thanks girl. Have a
great day..Hot Hot in N,J,

Hi @rosemarya. We have connected before. I need to lose weight to be in better health for my kidney transplant in a year or two. I was doing well for awhile (lost 20 lbs)but now I'm being a yo-yo. I really need to lose another 40 lbs but am struggling with my energy level (to exercise) because I'm in stage 4 and on very low protein. I also am dealing with plantar fasciitis which has meant no more walking the dog for quite awhile and that was my exercise before. I explored spending the money on Jenny Craig but they do not have low salt meals and I was ready to try Optifast with the local bariatric hospital program but you can only do that if in stage 1 or 2. Are there any programs at the Mayo Clinic or with the transplant team at Mayo? I'm open to any suggestions at this point. I know what to do, I just don't seem to be able to follow through long term.

@contentandwell - My first daughter (she would be 21 now) was named Stephanie and she died at 7 months. Unfortunately they did not do a full autopsy so the exact cause of death is really not clear. Technically she died of congestive heart failure. When I took her to the doctor for a cold I was sent to the ER and they found that she had dilated cardiomyopathy (enlarged heart muscle). She died in 12 hours after being admitted. After her death they learned she had RSV and a valve that did not close properly. The theories are as follow and depend on which specialist you talk to. 1) Her heart abnormality (from birth that we did not know about) combined with RSV was too much and led to congestive heart failure. 2) The heart abnormality was from PKD (my kidney disease and mirtovalve prolapse is common with PKD) and led to heart failure. 3) FAOD (fatty oxidation disorder) which was the most likely cause of death. As a result all my pregnancies were high risk because at the time little was known about it there was no way to screen a newborn (there is now for some strains) so often children die before it is diagnosed. I was on pins and needles with the birth of our second daughter because if a child vomits/spits up or has diarrhea their body attacks body muscle, including heart, for energy. It's a long story but either way my other two children did not end up having this genetic condition. We almost adopted since it was genetic and we were already dealing with passing on PKD and FAOD had a very high death rate 21 years ago.

Got to go. I'll answer your next question later.

@rosemarya, just an update. My BCBS insurance contacted me and says that Quest is in-network for both California and Arizona so I'm glad that's cleared up. I think it worked out because they are border states.
Regarding your follow up with Mayo Rochester, how often have you been going to the annual checkup at Rochester and what labs and procedures do they run? Do they still run the same labs/procedures as they did the first year? The one-year checkup at Mayo Az is the same as the 4-month check up. I believe the 2nd year check up is the same as the 1 year. Then the 3rd year checkup is just a remote appointment.
At Mayo Az, they follow the patient for up to 3 years only and then they sort of "kick you to the curb". No more follow ups after the 3rd year at Mayo Az. I'm hoping that they will agree to see the patient if after that time, there is urgent issues regarding the health of the kidney that the local neph cannot handle. The local transplant center here(UCLA, Cedar Sinai) are reluctant to take patients from out of state. They will refer back to where you got transplanted!! Looking forward to your inputs. Thank you!

I think that the terminology is confusing.
The ordering physician for Mayo/ transplant purposes is the transplant doctor who ordered the specific labs to monitor my post transplant health and to adjust meds if indicated by lab levels. It is unreasonable to expect a primary care doctor to know what labs or lab levels that my organ health requires. That is why I have an annual evaluation my transplant team about my transplant health.
I first returned home after my transplant, my first agenda item was to make an appointment with my primary care doctor to make sure he would work with Mayo transplant team to coordinate my care locally. Even contacting them when necessary.
For the lab, the local doctor is the ordering doctor because he is in-state legal physician.

I hope this clears it up.