Frequent urination

[Tahmed251]

I am three months post transplant and I am still having frequent urination. I am having to go the bathroom almost every hour, thats about almost 15-20 times a day. Even when I am outside I always have to stay close to a washroom because if I cannot go then I have too much pain in my bladder. This is really bothering me. Is anyone having similar problems after transplant, did it better after or worse over time. Please share.

[Chattycat]

Please contact your nephrologist or transplant center.

[Dara3351]

I live in AZ and drink about 2-3 liters a day of water. Have your labs changed? I would notify the transplant team or your nephrologist. I still get up in the night to urinate...

[blackkat2]

Yes, I had a similar problem. I also lost a lot of weight right after transplant. Turns out I had NODAT--new onset diabetes after transplant. Once they treated that, the frequent urination stopped--and I gained back all the weight I'd lost, and more (thanks to prednisone).

[Tarzan5]

Yes I have the same problem. I have to go almost ever hour. I am 14 months post transplant. My Nephrologist said that having a borrowed kidney wasn’t the same as my native kidneys. That the one kidney would not retain water as well as mine did. I also had very low blood pressure like 80/50. It normally was high before transplant. I was on meds for hypertension not any more. They told me to add salt to my diet and drink plenty of water and Gatorade. My blood pressure has came back up to normal range. I still urinate almost ever hour or hour and a half. I still go 2 to 3 times ever night. I had my Transplant on March 9th 2018. I also lost 65 pounds during the first year. I had a live donor which was my 27 year old daughter. I never been on dialysis. My creatinine dropped immediately from 6.63 to 1.4 after transplant. On the 14 month we started seeing an increase in my creatinine. It jumped to 2.1 then went up to 3.0 all in 2 weeks. The Transplant center admitted me to the hospital and did a kidney biopsy. The good thing it wasn’t rejection but I developed a BK Virus due to the rejection meds. They stopped all cellcept meds for now, but I am still taking the prograf 3 mg in the morning and 2 mg at night. Labs are slowly getting better. I am back to labs every week and Doctor visits every month. It seems it’s always something but I feel 10 times better then I did before transplant.

I wouldn’t worry about urinating a lot if your doctors are not worried about it. Good luck to you.

[Gardner-NY in reply to Tarzan5]

Tarzan5, thanks for sharing your experiences most recently with BK virus. WEre you have low hemoglobin /low white blood count, low energy for months the first six or 8 months after transplant? I read many responses from others on their challenges and don't see the no energy which my spouse is having the past 4 months. I is laying on the couch all day due to no energy to do something unless absolutely necessary. I feel bad for him. thanks for sharing.

[MKlug2015]

I would contact your transplant team as each of our bodies are so unique. In those early months, I was urinating frequently every 1-1 1/2 hours. My team told me to make sure that I was going to the bathroom every 2 hours anyway in those early months. I was up 2-3 times at night but found that if I didn’t turn on lights in the bathroom, I didn’t wake up as much and could go back to sleep easily. Over time, my frequent urination eased up but I still need to go every 3 hours or so and it isn’t wise for me to wait or I’m too uncomfortable. I also found that if I drink my 2 -3 quarts of water daily by 9 pm or thereabouts, I only have to get once in the night.

Enjoy this new life with your kidney transplant.

[Gardner-NY]

After two months post transplant, I told my husband's nephrologist something had to change for he was not getting REM sleep due to going to the bathroom through the night every 40 minutes or so. His transplant team told him to continue drinking water through the night, like four 16.9 oz bottles. HE was a walking zombie. The dr listened to me though my spouse who got the transplant 6 mos ago wasn't happy with me speaking up about it. It gets to the point the caregiver needs to speak up because it is needed. Now he drinks water when he has the desire to in the night so he sleeps a little better (he was a poor sleeper anyway). He drinks around 3 liters of water a day. He never counts a cup of coffee in the amount. He always drank water before the transplant in November anyways. Say something to your doctor. Also if you are not used to drinking so much water, some people it takes a while for the urinary system to get used to this new larger amount and after a while, the body gets used to it. We are all so different, so ask your doctors. I wish you all the best moving forward in your health. from the caregiver/wife of over 40 yrs.

[Ish123]

Its normal ...for few months. .becz..the bladder are shrinked in dialysis patients..becz of no urine or little urine..in dialysis patients..and after transplant.. It takes some time to back its storage capacity...I think it should be gone...in another one week..

[AlfonsoV]

Hi there, I had a similar situation almost for 6 months, now after 13 months I urinate totally normal. Last night for instance I didnt even have to stand uo from bed. Patience it might normalize, having said that always comment everything with your nephrologist.

Good luck!