Kidney Transplant: Does your creatinine bounce around?

Nice to "meet" you, too. You're not the only one to switch letters. I'm dysnumeric. When someone gives me a phone number, I always have to repeat it because I transpose numbers frequently. SIGH.

I'm not a transplant patient, but for years, my husband and I had a dental hygienist (Jane) who was a kidney transplant recipient. She was an avid tennis player, and played tennis in the Transplant Olympics. We were disappointed when she took a job with another practice. Having a transplanted organ is a blessing (as opposed to undergoing dialysis frequently), and doesn't mean giving up all of the things you love, although skydiving and auto racing are probably out of the question. I signed up to be an organ donor as soon as it was an option in my state, and my husband's experience with Jane made him decide to be an organ donor, too.

I joined the Mayo Clinic's support group to be in an osteoporosis support group. Skydiving, auto racing, skiing, and some other pursuits are out of the question for me, too. Anyway, I was trying to decide if I should change my medication, and reading other people's posts was very helpful. We all have limited personal networks, and it's great to be able to connect with people who have experiences that our friends and family lack.

Yes I had a sleepy kidney for the first few months, also showed rejection due to original disease entering the new organ, unfortunately. Low WBC and struggled with the Immunosuppression drugs, including gastritis, confusion foggy, head depression and very low energy.

Hi @mariasg 😊
It's interesting that you mention osteoporosis. I am thinking of starting Prolia injections this month. Twenty years ago, I took Fosamax for a few years. But chronic kidney disease can sometimes cause osteoporosis so my bone density continued to go the wrong decision.
Which osteoporosis medication are you considering?

@dougcornoyer 😊
Have things improved now that your sleepy kidney has improved? Have some of your symptoms improved with time?

I took generic Fosamax for about 2 1/2 years, but switched to Reclast in late Feb. The positive aspect is that it will probably increase my bone density by as much as 20% in 2 years, the negative aspect is that the bone that doesn't get destroyed because of the medication is probably weaker than average. From what I saw, there's no osteoporosis medication that's ideal. The same can be said for virtually any disease.

I recently found an osteoporosis clinic in my area, and had a long and informative appointment with one of the specialists. He ordered all kinds of blood tests and a 24 hour urine to rule out more unusual, but treatable, causes of osteoporosis, but established that I just have regular garden variety osteoporosis. If there's an osteoporosis clinic near you, I'd highly recommend it, if for no other reason than to get a well-informed opinion about what your best option is, which could be different than mine. One of the blood tests that I think will be part of my annual appointments is collagen type I cross linked-telopeptide (CTX), a marker of bone resorption/loss, which can be used to monitor the efficiency of osteoporosis treatment in addition to biannual bone density tests. The bad part about the consult was that the osteoporosis specialist I saw is an endocrinologist, and he found nodules on my thyroid, which is true for about half of people more than 60 years old. This led to a thyroid ultrasound, which led to a fine needle aspiration biopsy, which turned out to be atypical. Now I'm awaiting results of genetic testing from the biopsy to see if there are genetic changes that indicate an increased risk for cancer or if the nodule is likely to not become malignant. If the results are bad, at least thyroid cancer is very treatable, so I'm not very worried.

Hi @mariasg 😊
Thank you so much for the excellent information regarding your osteoporosis experience. This is all very helpful!
It sounds like your endocrinologist conducted a very thorough exam. (Of course, the downside can be a lot of extra testing. But if the doctor identifies a problem early, that's always a good thing!)
Please keep us posted on the final results and thank you again for all the details (including the collagen blood test name). I appreciate it!

Hi everyone... thank you to all for taking the time to share with me your experience along with your comforting words. MUCH appreciatee! All good advice. we will continue to do our visits, follow the doctor's advice and be outdoors more. We Wish everyone an abundance of health... i will keep you posted on his recovery... cheers to everyone for being so positive and strong on their own journey!

hi again. my son had blood taken again this morning and we are feeling lost!
creatinine went up again. eGFR is now at 38! kidney transplant was done november 29th.... and the blood work results are the worst ever. bilirubin up, wbc down, creatinine up, some blood in urine. hemoglobins, platletes ... all are down from last week.
they took him off completly from myfortic last week with the hope that the wbc would go up and help the CMV since the viral load was slightly elevated from 30 to 43. (under 20 is normal) . but that did not happen. wbc still went lower 2.6. we only get the CMV results in 5 days. but his tac blood level also went to 4.6 when normal is 6-8. he is taking 7 advagraf. doctor is to call us tomorrow morning ... we are just so worried of rejection and infection...

Hi @mariags 😊
It's so good to hear from you! Remember, your son's transplant is very new at the 4 month mark so it's not unusual to see some out of whack numbers.
Your son's recent biopsy should give you great comfort that there was no sign of infection or rejection.
Low levels of CMV virus can be easily resolved so don't panic waiting for the results.
What creatinine level did your husband have right before donating the kidney?
What was the lowest creatinine number that your son has had since the transplant?

Thank you for your words of comfort. we are doing a CT scan tomorrow.
I will keep you posted. my sons mental health is just spiraling now... he believes he will be on dialysis in 6 months! his mind is in a dark place right now. we are trying to give him his space but also support him. we are a strong family.

my husbands creatinine pre tranplant was 108. on march 23 it was 158.

for my son, lowest creatinie post tranplant was 151 and that was one month post tranplant! since then it just has been steadily rising.... yesterday was at 194.

any words are greatly appreciated.
thank you.