Two-year check up not what I expected (October 30, 2021)

[Blue-Quilter]

I had my two year post transplant check up on Wednesday and it was a mixed bag. The doc was pleased that I've lost 65 pounds since the surgery. He was concerned that my blood pressure continues to rise despite being on four blood pressure meds and a diuretic, but didn't want to make any changes since he only sees me once a year. (At my pharmacy appointment the next day, she added yet another BP med, which didn't surprise me, but did disappoint me.) And my tacrolimus level continues to bounce around like pinball in a pachinko machine.

I keep a log of ALL my lab results and I compare them from time to time. I average the creatinine readings for each year and compare them to the average for the six years prior to the transplant (as far back as I have records). The frustrating part is that they're not significantly better than before, although the average has improved a tenth of a point each year for a total of 0.30 better than the pre-transplant average.

I asked my doc why there wasn't more improvement, if I was doing something I shouldn't be, or wasn't doing something I should be doing, and he said no. I was adhering to my food and med plan like a champ. His best explanation was that the (deceased) donor kidney was more damaged than they could tell at the time and that several of the blood pressure meds I'm on tend to raise the creatinine. So basically, this is as good as it's going to get, which is really frustrating.

The first stanza of the Serenity Prayer says "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." This definitely falls into the "Accept the things I cannot change" category, and I am SO far from acceptance. I'm on a total of 16 prescriptions and and seven supplements, compared to three Rx's and no supplements prior to the surgery. The worst part is I really don't feel any better than I did before. Two of my brothers had transplants before I did and they both spoke of the burst of energy and clearer thinking they had afterwards. I'm still waiting, but not very optimistically at this point.

For the record I want to state that I am grateful to be alive, but I was before my surgery as well. I realize every breath I take is a gift from God, and I'm still here for a reason. I'm not sure what the specific reason is, but I'm okay with Him revealing it a bit at a time, as I continually yield to His leading. What I want to know is how do I get to the point of acceptance? Right now I feel more resignation, which carries the weight of defeat with it. How did you cope when things didn't turn out as you had anticipated? I know this is long, so thanks for reading all the way to the end. And thanks for any input you have to offer!

[Santaponsa1]

Hi. You saying you only get a yearly renal check? Or is this with your doc..I had my transplant 6yrs come Dec and I had 8-12weekly checks face to face with my consultant up until covid, thereafter 6weekly blood checks. I also had a burst of new life following above until I took bowel problems from anti rejection pills four yrs on and on meds for same. Ialso experience tiredness and weakness now which is awful, but Hey, we're here and we can't ask for anything more than that and I'm grateful🙏I received my live kidney from my husband who is a healthy guy. I've also lost 2st in weight since having bowel probs and can't put it back on which has left me underweight and that more than anything gets me down and docs also can't underderstand it for I eat but never been a big person so need to keep going working on this...I've had every test under the sun but to no avail. However here's hoping you get the strength your looking for ( all in God's time I suppose) but we'll get there I'm sure. Like me stay strong and look after yourself. God Bless....

[Graham49]

One check up a year is not good. It is 5 years since my transplant and 6 months has been the largest interval between my checks.

Consider getting a second opinion.

[Blue-Quilter in reply to Graham49]

I see the transplant nephrologist once a year now. I see my regular nephrologist every three months. I see the infectious disease group evey three months. I see the endocrinologist every four months. I see my primary care physician every six months. I still get my blood drawn every other week and talk with the pharmacist the next day, so I'm not being neglected or overlooked. And I'm still working full time with an hour commute each way. All of my providers are part of the same health care system so everyone is looped in to test results, CT scans, etc. Thanks for your concern.

[Santaponsa1 in reply to Blue-Quilter]

Wow you get well supported. I never have that, however dont need it thank God. Get referred to wherever if doc thinks there's a requirement. Take care

[Blue-Quilter]

I would love to see just the transplant nephrologist once a year and have quarterly labs like my older brother. Unfortunately I'm not healthy enough for that maintenance level of care. I keep hoping it will get better, and am actively trying to make that happen, but not having a lot of success just yet. So I take it one day at a time.