Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
There are so many treatment options (or are there?) Some have the same names.....If anyone has info or experience on these please let me know. I have an appt. with the Mayo transplant team next Wednesday as they are going to determine the best treatment (surgery) for me as well as determine if an early live donor is an option due to severe, disabling pain that is not controlled at this time.
1. Decortication
2. Deroofing
3. Fenestration
4. Ablation
5. Marsupialization.
Thanks so much in advance.
I also decided (for financial reasons) to return to work on Monday. I don't feel ready nor capable of this, but all I can do is try at this point. Wish me luck and less pain :)
1. Decortication
2. Deroofing
3. Fenestration
4. Ablation
5. Marsupialization.
Thanks so much in advance.
I also decided (for financial reasons) to return to work on Monday. I don't feel ready nor capable of this, but all I can do is try at this point. Wish me luck and less pain :)
I have had cyst drained, deroofed, multiple nerve blocks and finally this June a radical nephrectomy. Besides the nephrectomy, the cyst deroofing worked the best to relieve some of the pain but only for 6 months then the cysts grew back. The recovery time from the deroofing was about 2 weeks. I had the procedure done at Cleveland Clinic stayed overnight then went back home the next day (NY). I had a drainage tube for 4 days. The cyst draining only lasted a week. It was a simple procedure but the Doctors wouldn't do it again for only a week worth of relief.
I had the left side nephrectomy done in New York after going back to Cleveland this summer. It took 9 years after trail and error to get the Doctors to decide nephrectomy was the only option left. If you any questions please email me. I hope you find something that can help. I was very firm with my Doctors and brought in all the options for pain relief for PKD and showed we tried all of them.
Lisa