Following up after transplant

[Yasso]

Hello all. I had my transplant from a live donor in March 2020. So I'm 2 years and4 months in. I'm fine and stable thank God but my problem is the follow up from my medical team. It was all fine till the doc disappeared completely after i finished my second year. I'm looking for another medical team. My question is what's the time span between each blood test to follow up my condition. In the first year and half I used to do blood tests every week or two depending on the situation. But I'm ok now. My last test was three months ago , totally forgot , time flies Should I do the tests every month or more or less. Those with experience could help me please. Thanks you

[LisaSnow]

Did something happen? It is highly unusual for a transplant center to "abandon" their patient without a follow up care plan in place.

[Yasso in reply to LisaSnow]

Nothing except that because of Covid we have been in touch through WhatsApp and calls only. I only saw the doctor once. I don't have a medical team, just a doctor . That's the system in my country. I will have to go and visit him at the clinic to understand the reason but it's a bit far away in another city. Trying to check out someone closer to home. Till then just wondering what I can do myself

[LisaSnow in reply to Yasso]

I see. In my country lab work needs to be ordered by a physician. Won't you also need a doctor to order yours? You definitely should get basic lab work repeated every three months or less. Perhaps give your doctor's office a call and ask for a referral for another doctor closer to where you live?

[Yasso in reply to LisaSnow]

Thanks Lisa. In Egypt where I live Labs don't give too much attention to having a physician request for tests maybe in certain cases like cancer. But normally I can go and ask for a full checkup and tests. They ask for a physician's name that's all but not a prescription from the doctor. The transplant operations are very successful here and we have good experienced transplant surgeons because of the high rate of kidney diseases in the country but the general problem is always the follow up, also because of the high rate of kidney diseases. Doctors have their hands full wuth patients so basically you're on your own unless you are lucky enough to find a caring doctor to keep in touch regularly on the long term.

[BabyTee]

Glad to hear you are doing well. I am only 10 weeks post-transplant.

I am also in the US, like Lisa. The frequency depends on the patient and the doctor/transplant center. My coworker was tested weekly for the first year. Then he was tested once every 3 months for the next 2 years. At 3 years he was switched to once every 6 months. He was told the frequency will stay that way, unless he has a problem. He was also switched from a transplant nephrologist to a regular nephrologist who would refer him to the transplant team if there was a problem.

This was for him, unless something weird popped up that required more frequent testing. Every time they changed his meds or he got sick they added additional testing.

I have a different transplant center, so I don't know what they will do with me.

[Yasso in reply to BabyTee]

Thank you so much BabyTee for your reply. I hope all goes well with you too. I scheduled a blood test for tomorrow and if things are normal will do the same like your friend and schedule the following test in three months . In the meantime will check out another doctor to follow up with. Wish you all the best .

[Daijb]

Hi. We live in the UK and my wife had her transplant 1 year ago. She has bloods done around every 6 weeks as she has had some stability problems due to the EBV (Epstein Barr Virus). Her bloods are currently fine so the 6 weeks may start to extend. She is managed by the Post Transplant team at the local hospital.

[Yasso in reply to Daijb]

Congrats Daijb to your wife and I wish her all the best. Thanks for your response, your feedback has eased my concerns that I'm on the right track.

[DexterLab]

I am in the U.S.A. too. I am 3+ years after transplant. I am testing every 3 months and seeing either a nephrologist or the transplant center every 3 months. I contact the transplant center for questions about COVID-19. You should probably look for a nephrologist with transplant experience to replace the transplant doc. Congratulations on your transplant and good luck.

[Bunkin]

Hi I’m a tear and a half out. My care was taken over immediately by a nephrologist from transplant team although I do get “big labs” ordered by transplant team every 6 months now. Last visit to nephrologist we decided on 4 month visit which im ok with because I will get big labs in august and not see nephrologist til October unless I have a problem

[WYOAnne NKF Ambassador]

Glad you are doing well. I am 22+ years post transplant and I still am scheduled to see a nephrologist and labs every 3 months. Even though I am far out from my transplant and the possibility of rejection is low, doctors can catch any problem early and turn it around.Take care.

[littlelinda50]

I do mine once a month now and I am 3 years out. I just started doing mine once a month because my numbers were all over the place. I understand how you feel. My transplant team leaves me in the dark all the time unless I constantly call them. If I don't call and ask if my numbers are okay which I have enough medical knowledge to know when they are not they don't say anything to me. I feel you should do them once a month to make sure your transplant anti rejection meds are at the right level.

[bsssa11]

Hi,I am bsssa from India, I had gone through live donar kidney transplant 10 months ago and everything is going fine.initial three months my Nephrologist suggested cbc and kidney profile test weekly basis later on another three months after 15 days and now monthly basis with taclevel test.also told me lateron it goes quarterly and half yearly test to check the kidney function and creatinine. Thus there is no need to check cbc and other test weekly if everything is on right way.