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.

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/ Polycystic Kidney Disease (PKD) Support Group

What's your opinion?

LPenrod
LPenrod
I'm 47. I have an aggressive form of ADPKD. I haven't worked in almost 2 years. My pain is under control with so much pain medication that I do little to nothing but sleep. My GFR is only 29. I've had the scraping done once and that helped for only a few months. I had nerve blocks that were quite successful and then each subsequent one was less and less successful to the point they are now ineffective. Nerve ablation didn't work for me. Now I have a blood clotting disorder (Lupus Anticoagulant) complicating things and increasing the risk of everything.

I see a surgeon on the 20th. I am considering just asking him to consider kidney removal (chronic infection). I already have some living donors lined up for when I am ready for transplant. I feel like I want to get these pain bags out of me, get a new kidney and get on with my life. I have practically no quality of life now. I understand I will be on dialysis for a period of time.

Am I rushing things and down the road going to wish I hadn't?
deleted_user
deleted_user
I rarely had pain with my PKD so I waited. with a heavy history of PKD in my family I had no living donors so I am no expert in this matter.
my advice is get working on having your potential donors tested so you know where you stand. living on dialysis may very well be a better option than debilitating pain. I was on dialysis for nearly 3 years and other than the time it took lived a normal life. doesn't sound like you have that now.
good luck with what you choose and please keep us informed.
shirleymac
shirleymac
If I were in your position, with living donors available I'd get working on getting your donors tested and all the tests done that you need to have done to get on the list. My neurologist believes in preventative medicine. I have a thick packet of forms that are all kinds of tests required to even get on the transplant list.

Like Spiderwoman I've had no pain with my PKD. I wouldn't even know I had it if not for an ultrasound for something else 40 years ago. The only effect I have now (at GFR 23) is exhaustion.
norma67
norma67
I agree with shirlymac, would get the ball rolling! With the government crashing down on docs prescribing pain meds, your days are only numbered! Going into withdrawal is not something you are going to enjoy! You are very lucky to have people waiting in the wings, get it done! ASAP! Lots of love, Norma ....
LPenrod
LPenrod
Speaking of pain management... It took 2 years to get into a pain management clinic at KU. All over the country, pain management centers are not taking new patients. The only reason I got in was that after years of my nephrologist literally begging for someone to take my case, he cornered a pain management doctor in the produce section of their local grocery stor. True story
LPenrod
LPenrod
4 hours until I see the surgeon. For some reason I'm can't sleep tonight...
LPenrod
LPenrod
Alright, here is the scoop.

On the 24th I have an NM Renal Function w/Lasix test to see what percentage of total function each kidney represents.
My left kidney represents 60% of my pain and my right represents 40%.
If my right kidney is dominant, then on Dec 4th, my left kidney will be removed. If my left kidney is dominant, then both kidneys will be removed at (I believe) a later date.

Finally. Instead of this long slow decline that I basically only react to, we are doing something proactive. A step forward to getting my life back.
KelleyPaterson
KelleyPaterson
I think it would benefit you to copy and paste your last post into a new discussion so that you can get some responses. I know we have people here who have had kidneys removed.
painalways
painalways
I don't believe you are rushing it at all. I am actually in the same boat. I started pushing for a bilateral nephrectomy when my function was at about 28%. The pain is awful and so are all the meds to help deal with the pain. I finally got approved this year, on the condition that I find a living donor and when a transplant date has been set my kidneys will be removed about 6 to 8 weeks prior. My sister in law is in the middle of testing now and hopefully all goes well. My function is now below 20%. I wish you the best of luck in what will work for you. Take care.