Posted 7/4/2009 5:57 AM (GMT -7)
Elizabeth..... 1st off I'm so sorry your feeling one of the complications of PKD. I'm also sorry I didn't post to this lastnight. I have had some discomfort myself and took a 2 day break from the internet.
You really really really need to get a can of your kidneys. Is this your primary doctor? Have you ever seen a Nepherologist? My urologist and nepherologist require I get a scan every six months for life.
In the beginning all my doctors never understood my constant annoying discomfort in my flanks. In the beginning it was just my right side then after a year the left side started to act the same way. I have had three urologists. Not until the third one sent me to a nepherologist that I found out constant pain is common.
Here are some of the complications I experience that causes pain. Understand though that my PKD is not advanced it has not changed the structure of my kidneys as of yet.
I was not diagnoised with PKD until last december. It was a long road of the pain getting more and more annoying. They keep saying I could be on the severe end of normal cycstic kidney and liver. Duh PKD.. I live in a kinda rural area outside of Nashville and no one likes to label a patient with a Dx around here.
Now I see my kidney doc every six months who also refered me to a pain clinic. I have found relief with sympathetic nerve blocks. Its helps about 25%. You might want to look into this procedure if you don't want to take pain meds. Its helped me enough to not have to increase my pain meds.
For your health and comfort please seek another opinion. Your doctor is not following normal prodical for PKD. Also PKDcure.org has a wonderful supply of information for doctors and patients.
I hope something in this post is helpful and hopefully your 4th of July goes well and safe.
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all