Polycystic Kidney Disease and cyst burst in native kidney after transplant

[Gardner-NY]

Do you have PKD and had a cyst burst post transplant in native kidney? Did it lead to hemoglobin low or other problems? My spouse has PKD and this happened a few months ago. I am new to this site.

[noonekcb]

I have PKD. 1995 I had my first transplant in PA. Three weeks after transplant I was in so much pain they had to remove the two native Kidneys. One was 6lbs the other was 5lbs from all the cysts. After that all was good. A plan to have them removed my be a good idea. Talk to your Doctors!

[Gardner-NY in reply to noonekcb]

Did talk to doctors and PKD kidneys are not large enough to warrant removal and also he had his first only cyst burst is also a reason. If all this changes for the worse, then removal could be on the plate to do the doctors told us.

[Gardner-NY in reply to noonekcb]

We brought this topic to remove one or both PKD kidneys but the surgeon said they were not large enough and the outcome if he did so would be problematic in recovery after the transplant. Never in his life with PKD has he had a cyst burst until after the transplant. The transplant clinic told him after this burst episode if it happened more often, then they would rethink about removal of PKD kidneys

[Balap]

both of my pkd kidneys were removed prior to transplant

[Gardner-NY in reply to Balap]

His PKD kidneys were not large enough to consider now removing, so they are there with 13 GFR function and also his new donated kidney which now GFR is 34 to 35.Why were yours removed? Where they very very large like some grow to be?Hubby had his first kidney cyst burst 3 mos after transplant. That was a painful two weeks for him. Thanks for sharing. I wish you all the best.

[Balap in reply to Gardner-NY]

My pkd kidneys were 22cm and 18cm. I had frequent cyst infections, the last infection caused severe bleeding for few days, it was all red, my Hb dropped quickly to 7, and the kidneys were removed ( laparoscopic) as an emergency operation.

[Gardner-NY in reply to Balap]

Thanks for responding.I am sorry to hear you needed emerg. surgery but glad it was successful. 29 yrs ago we found out my hubby had PKD and his brother (older) did too from their mom. My hubby had cysts that would leak maybe every 2 yrs.They rarely caused him problems and they were not so big they needed removed per transplant surgery. HE had his first cyst burst FEb2019 and 2 wks of bleeding & clotting in urine of blood and back pain. I pray this never happens again.He is pain free now.

[Balap in reply to Gardner-NY]

I'm sorry to hear the bleeding. 2 wks of bleeding is quite long. Monitor the hemoglobin, if it goes low -- say below 10 or 9, then you may ask your neph to prescribe Erythropoietin injections

[Gardner-NY in reply to Balap]

For two months I have been giving him 3X a week 'procrit' injections and slowly hemoglobin has gone from 6.8 to 8.3 His energy still is not there to be active.

[Balap in reply to Gardner-NY]

I'm so glad that my enlarged painful pkd kidneys were removed. Now I live totally pain free and infection free. Left kidney weighed 1.5kg and R was 1kg. Now I'm 6 years post transplant. May I know when your husband had his transplant?

[Gardner-NY in reply to Balap]

Thanks for telling me more about your PKD which were removed. Hubby had transplant Nov2018.

[Gardner-NY]

My spouse of over 40 yrs has PKD genetic and never had a cyst burst, but 2.5 months after a successful transplant of donated kidney his right native kidney had a cyst burst. First time ever experienced this.Two wks of blood & blood clots in urine and in pain. Shortly after this his creatinine climbed to 2.4 and a biopsy done showed early rejection,so 5 days of IV steroids which reversed this. While in hosp for this found his hemoglobin was down 6.7. Due to the size of native PKD kidneys, did not warrant removal during transplant.I give him 3X week a shot to boost his hemoglobin slowly and it is working, but now new issue is low blood cell count. Found out last week. His energy wanes super easy as of Feb to now.

[Balap in reply to Gardner-NY]

Neupogen Injections are given to increase the WBC count, takes just 1 week to increase

[Gardner-NY in reply to Balap]

Tomorrow hubby is having his first medication via inhaling it for 45 min. at the hospital and the med is supposed to improve white blood count due to it being low. Medication name I forget. Starts with a "P". Hubby is also diabetic and on 2 different insulins adds to the complications of his health. Maybe he cannot take some meds that others can take.