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.
On January 13th, I had my left kidney removed due to chronic pain and infection. Oh what a difference that has made. My pain has decreased significantly. I'm going to start scaling down my pain medications to see where I am at. My GFR is in the transplant range now.
I had a deroofing procedure done 3 years ago, so the kidney doesn't look anything like a kidney. I have pics if anyone wants to see.
The procedure was done laparoscopicly. It blows my mind why anyone would consider having it done "open". It only took a 4-5" incision to get the kidney out. I was in the hospital for 3 days to get the pain under control.
There was a significant chance that I would continue to have the kidney pain even after having it removed. I still have some surgical pain, but for the most part, the left kidney pain is gone.
I am so happy at this point and look forward to cutting back on the fentanyl and hydromorphone.
I had a deroofing procedure done 3 years ago, so the kidney doesn't look anything like a kidney. I have pics if anyone wants to see.
The procedure was done laparoscopicly. It blows my mind why anyone would consider having it done "open". It only took a 4-5" incision to get the kidney out. I was in the hospital for 3 days to get the pain under control.
There was a significant chance that I would continue to have the kidney pain even after having it removed. I still have some surgical pain, but for the most part, the left kidney pain is gone.
I am so happy at this point and look forward to cutting back on the fentanyl and hydromorphone.
Wishing you well,
Chewitt
What hospital were you in?
How much did your kidney weigh, if you know?
How long was the surgery?
Why did they only take out one kidney? How is the other one?
Any other things you could share. Wow, thanks for this! Keep us posted and congratulations!!! Blessings to you for further recovery!
Heather
I am working with the KU Transplant. I have 3 people that are willing to give me a kidney. They about to be worked up one at a time to see whose would work the best.
If all goes well, I wont require dialysis at all (laparoscopic out and in on the same day. Chronic infections could possibly muck up the one day plan requiring me to be dialysis for a short time.
Heather:
The Hospital was KU Medical Center.
I haven't heard the weight yet. I have some pictures that don't give too many clues. The pics make it look 8-12 lbs. I'll post the actual size when I find out.
The kidney went to the Kidney research group at the hospital.
I'll have to ask my wife how long it was, I don't remember. My guess would be 4 hours.
There was a debate whether to take out both kidneys. My left one was causing the majority of the pain. I also had the problem where my GFR >20, so I couldn't begin the transplant process. The doctor did a renal scan with lasics. This test showed that my left kidney accounted for 40% of my overall renal function. So out it came.
The other one is pumping away just fine. It is not showing any signs of stress from the surgery.
It's nice chatting with everyone and sharing experiences. ;-)
Good luck,
Chewitt
I'm so glad to hear you're feeling better. Do be sure to work with your doctor on tapering down on your pain medication; it's not something you want or should do on your own (I just got lectured by both my PCM and pain management doctor for reducing my own dose of methadone, cold turkey, on my own, thankfully with no adverse reactions).
I'm glad to hear you have some living donors candidates because the deceased donor listing process has changed dramatically. You can only be listed for a deceased donor once you have started dialysis, not before. So for those who were on the transplant list because they had hit a GFR of 20, they are no longer on the list and get no credit for time spent on the list. Time will only count once you start dialysis.
Yes, I know this is contrary to the "transplant just prior to dialysis" that appears to be the best option for most every patient. And especially for PKD patients who can't go and ask their family because everyone had the same disease, so we don't have that extended family able to donate (EVERYONE still living in my family had PKD except for one cousin who donated a kidney to his brother). My mother is an only child in a family of only children, so there's no one on that side of my family to ask (plus I need a liver/kidney transplant, so I need a deceased donor).
Anyhow, I haven't seen any comments about the new transplant process, so I just wanted to put this on the table. I've been gone for quite a while so maybe I missed it.
I wish you well and hope you get match soon!!
Ruth
How did your pain progress over the years?
Slight pain for me started two years ago at age 38. My blood numbers are fine ( 85 eGFR), and kidneys are at the 15cm and 18cm size. ( normal is 11 cm )
Pain is nothing but a nuisance right now, and comes and goes, sometime for many days.
Interested to hear how the pain changes over the years.
- Daryl
I have to say, I have my days of depression up here in Alaska... wondering what the heck I could do, and your story is very encouraging.
So you are just waiting now for the donors to have their work up? Do they feel that you are well enough to go through the transplant? Gosh, it would be so awesome then, if they just take out your other kidney and hook up the new one, is that the plant? No stints to the bladder, no extra plumbing, wow!
You are really generous to share all of this with us!! And please keep us up on all of this!
Blessings
Heather
Be sure and treat your depression if you are not currently. Life doesn't necessarily have to be that way. My depression goes up with the pain.
I am in the middle of my workup (had my heart stress test last week) and I am not sure where exactly my donor is in the process.
I've heard several different versions of the plan. Originally it was remove both kidneys, to on a heavy duty antibiotic to clean up any infection and be on dialysis for maybe 6 weeks. And now they are saying that they can add/remove the kidney at the same time. Once was even discussed to add the donor kidney and wait a few days to make sure things are going well before they take the other old one out.
I suspect the the new kidney would go into the usual spot for transplant patients. I haven't asked for any clarification on where it would go. But I will now.
It is my pleasure to share my experience.
And I just want to add that if things are not going in a direction that you think they should be, flat out tell them what you want. e.g. I feel I would have a much better quality of life if we went ahead and removed the left kidney. I have practically no quality of life now.
Options started opening up for me when I brought up my lack of any quality of life.
Wishing you all the best!
Larry
But, I think that what stands out most to me that you have shared is "Quality of Life". Although I have been fighting with insurance companies for the past couple years, I think I could be pushing more to find out if I could increase my quality of life with a possible kidney removal... I am going to have to PUSH HARD for a meeting with the transplant team next time they come to Alaska. So far I ask, and then find out that they have already come and gone, again and again, without letting me know.
Do keep us informed, and thanks again!
Heather
If you have essentially little to no quality of life, how can they deny you treatment.
When I talk to my doctors and where I am at, I now always process it in terms of quality of life. IT WORKS!
Doctors understand disease and its progression. They wait for certain markers (low GFR for instance to begin) the treatments that most of us wish we could get ahead of time and get this period of our lives behind us. I TRULY feel that when you flat out tell them you have little to no quality of life, they start to think outside the box and come up with solutions to try to increase your quality of life. But without those discussions, they seems to just wait and be reactive.
When my Nephrologist sent me to our favorite Urologic surgeon, I typed up a letter so I could get all of my thoughts out. Here is the actual letter that I used, with some redactions:
Dr. David XXXXXXX (Urolgic Sergeon) 10/20/2014 Consult
I am bouncing between two extremes. Either I am on so much pain medication that I basically don't function well and sleep most of the day or I have debilitating pain. As a result, I am not working and I am doing little else. I have a very poor quality of life.
60% of the pain is on the left side. I would like to have that kidney removed. Both of them are chronically infected. I have been taking various antibiotics for greater than 4 years. I asked Dr. XXXXXXX (nephrologist) if he was on board with that. He is fine with that. Matter of fact, he felt that if I had some living-donors lined up you might even consider taking it to the next level with the removable of both kidneys and working on getting me listed and getting started on dialysis. To help make this a possibility, I have lined up 4 donors that are willing and happy to do their testing and sign on the line to give me a kidney:
XXXXXX XXXXXX (wife, female, 49, A+)
XXXXXX XXXXXX (brother in-law, male, 48, ?)
XXXXXX XXXXXX (brother in-law, male, 49, A+)
XXXXXX XXXXXX (wife's cousins husband, male, ~48, A+)
Strategies that I have tried in the past and the results:
Procedure Recovery Time Results Lasted
Pain management n/a n/a
Dr XXXXXXXX (nephrologist) &
De-roofing of the left kidney 6 weeks 2 months
including partial denervation
Splanchnic Nerve Block 1 day 5 or 6 weeks
Splanchnic Nerve Block 1 day 4 weeks
Splanchnic Nerve Block 2 days 2 weeks
Splanchnic Nerve Block 3 days 1 week
Splanchnic Nerve Ablation 2 days 0 days
Thank you for your consideration!
Larry Penrod
Anyway, that was the document that the doctor looked at and thought about it briefly and said ALRIGHT, lets do this! We did a nuclear scan to see how much each kidney was functioning. The more painful kidney produced less urine, so that was the one to go. I was a little concerned because if it had been the other way around, we were going to remove BOTH kidneys and then use one of the donor kidney either right away or after a 6 week period of dialysis and antibiotics to make sure the infection was cleared up. That was so surreal. We were moving FORWARD!!! And I've got to be honest that I prayed that only one kidney was going to be removed. I am not sure I was ready mentally for dialysis.
I wish you all the best. And I hope that everyone makes Quality of Life a standard discussion with your doctors. In my case, they have all responded to it well and seem to be using that filter when they make decisions about my care.
I would be happy to give anyone my phone number in a PM if you would like to talk to me.
Please excuse the unorganized brain dump. :-)
Larry
So maybe all you really need is your nephrologist to refer you to a Urologic Surgeon. And don't forget to find a Surgeon that is experienced with laparoscopic kidney removal. The recovery was somewhat painful (just your typical soreness to move, pass gas (lol), etc...), but other than that, it was a piece of cake!
Larry