Hi All,
I'm in the process of scheduling my last official follow-up appointment at my Transplant Center (They're actually working on rescheduling me for the THIRD time, which is quite frustrating, but that's an aside...). It'll be my one-year appointment, and after that I'll need to transition to a primary care physician. I know this might sound a bit odd, but I've never had a regular doctor. I was 27 when I donated and I didn't have regular health insurance until shortly before I donated, at which point my physicals and tests, etc. were covered by the Transplant Center and my mom's insurance.
I'm kind of nervous about moving on without regular follow-ups at the Transplant Center for a couple of reasons... As far as the doctor's could tell, my mom's chronic kidney disease was caused by hypertension so I know it's a genetic risk factor for me. At the time she was diagnosed, it was sudden because she wasn't seeing a physician regularly. But it came as a huge shock because she had recently started exercising regularly, lowered her blood pressure, and lost a lot of weight. But still the damage had been done, unknowingly. I guess you could say I learned my lesson from that and I'm a little scared myself.
Anyway, here are my questions: Does anyone have any suggestions for important information I should ask for from the Transplant Center and my nephrologist before I officially "leave"? Also, what other tests or evaluations do I need to make sure my new doctor-to-be watches out for in the future? And any other suggestions for things I should make sure to do moving forward to try to maintain a healthy lifestyle? I know those are kind of broad questions, but I guess I'm just worried I may have some complication or develop chronic kidney disease too.
I'm trying to prep for my appointment so I can make sure to get all my questions in. The Transplant Center is always very busy, so I get frazzled when I'm with the nephrologist. Even now, sometimes my incision aches when I've been on my feet for a long time or I feel I get fatigued easily, which she's told me is "normal," which sounds feasible. But sometimes in the middle of the night I worry if that really is normal.
Now that I'm a post-donation donor, I feel a bit like I've been neglected by the transplant coordinator, etc. because I'm not as "critical" as the other patients they see, and I completely understand that, but I just want to make sure I walk away informed--but I'm not really sure what I need to know, and I think it's stressing me out...especially the longer I wait for them to reschedule my appointment!
Does anyone have any thoughts or suggestions? Thank you in advance for reading.