I am having polycystic kidney and was on dialysis for last 3 years.All of a sudden my BP and Blood had dropped. Now my doctor is advising me to get both my kidney's removed and do a transplant whenever a donor is available. Any one has undergone similar situation please let me know.
I, too, have polycystic kidney disease. I was diagnosed over 35 years ago, and was the first in my family to be diagnosed. I had two brothers, 16 and 18 years older than I, who both had it. Both of them went on dialysis, and died after ten years. Of course, they had not taken great care of their health, and it's been 11 and 4 years since they died. I am now 62.
When I was diagnosed, my doctor told me that 'maybe 25-30 years down the road, you may need to have a kidney transplant.' Well, it's been 35! My kidney function is now down to 14%. I've not needed to start dialysis yet, but realize it may happen in the near future.
I researched online for places close to me that did transplants. I live outside Baltimore, MD, and have both Johns Hopkins and Maryland University Medical Center close to me. I chose Maryland, mostly because they will take out the old kidneys. Both of mine are full of cysts, and probably weight 10-15 pounds each. I think having the old ones taken out will feel much better than carrying around the extra weight.
Although it is scarey to think about having this done, I think a transplant is the way to go. The anti-rejection medications are improving all the time, and I don't want to be tied to a machine for dialysis.
I made an appointment and went to MD to get on the (UNOS) list. There were many tests that had to be done. It took me almost two months to get them all done, but I am now on the list, waiting for a kidney. It can take a long time to find a match, so it is wise to get on as soon as you can. Usually, I believe you need to be around 20% kidney function to be listed. Initially, I was told that around 15%, you need to go on dialysis, but it is a case-by-case basis. So far, I don't have to do that.
I don't know if any of this helped you, but if you have any questions, feel free to ask. I will try to help in any way I can.
I do not have pkd, but have several friends who do. In addition to that, I myself have been on dialysis and have had a transplant. I am now 7 years post transplant and still doing well.
My one friend had the largest polycystic kidney our hospital has every seen. It is one for the textbooks. They had to remove it in order to make room for her transplant. She was on dialysis for a short period before her husband gave her a kidney. It took a while to recover from both surgeries, but she is doing fine now.
I didn't do that well on dialysis and have to say that life after transplant is infinetly better than before. Yes, the list of potential side effects of the drugs are scary, but I have virtually no significant side effects and because I use the simple precaution of hand sanitizer, I don't get sick. I would definitely say go for the transplant. Even if you feel you are doing well on dialysis, most people feel much better after the transplant. And many studies also show that your life expectancy can be as much as 4 times greater with a transplant than with dialysis.
If you have any specific questions, just let me know.
personally, i don't think i 'could' allow both kidneys to just be removed without actually already having a good donor set up right away for transplant? if you actually just DO have any real function going on in there but still have to do dialysis, it IS doing 'something' still? you know what i mean? and if you do not yet have a real live donor in place, well the wait can be lengthy even at status 1a and national on that list. its just the overall demand for kidneys.
you stated that your BP dropped and "your blood"? what exactly does 'blood dropped" mean exactly? what are your actual lab numbers looking like right now? your GFR and creatinine?
i too have PKD and found out i actually had in at around age 40 only after our son at age 12 became deathly ill from what we did not even know HE had that was a mutated version of PKD that attacked his liver with these nasty little fibers even while he was still inside me. we just did not know til he presented with symptoms. he ended up needing a liver transplant back in 2000.
my particular PKD is now in both kidneys and my liver and a few other assorted places. despite the fact i am a very tiny person my kidneys are over four times their norm at this point and just killing me becasue of the pressure in my chest. my R kidney got way too big to even fit in my right back anymore so about 2005? it actually popped out of my back and into the front now where it is just really impacting alot now. the one thing about transplants when you have PKD? unlike with most kidney disease where they attach the new kidney along with a ureter, they will usually leave the old one inside where they just kind of wither away after time? with PKD they almost in every case are kind of forced to have to remove them only because of that sheer size they can become over time. i could not EVEN imagine leaving these huge suckers left in me after i get transplanted at some point here. luckily,as of my last labs almost a year ago, things are still good which still freaks me out given the nasty way they look upon my ultrasounds. just the sheer size alone is wayyy too freaking huge for my body having these in both kidneys and liver. this particular type of kidney disease has to be one of the MOST insane and bizarre out there just because of how it does what it does, and how it can mutate and also change within each individual family unit too. i also developed a brain aneurysm from mine in 2005, and was also born with another vascular malformation within my spinal cord too from this crap. just comes with the PKD risks from natually weaker vessel walls we are simply born with.
but getting back to your situation here boben. knowing where your lab numbers actually are would help. i just really would be very very apprehensive myself at having both kidneys removed without having a good solid donor there for immediate transplant. but thats just me here. i would make darn certain to simply ask your nephrologist just what are the potential real risks to YOU if this resection is actually done. tho there may not be any, you never know ya know? as badly as the pain and ungodly pressure can be just from sheer sizes of our organs, it just for some reason kind of gives me the willies to know my kidneys would be gone and no donor there kind of thing? have you tried to actually find a potential live donor for this yet? i know with this crappy disease any family members are kind of out of the question to a certain degree, but i really would try and see if you can find one here before consenting to total removal. but that like i said, is just me here. alot of your situation and your overall medical status and what is being impacted would truely dictate what should and should not be done. your actual numbers really kind of dictate what should come next overall. i do wish you luch here with whatever you actually choose to do. please DO keep us all posted boben. Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Just wanted to mention to Feelbad, that if a person is on dialysis for 3 years, typically, there is little or no residual function left, especially if a person is on hemo. This is not true in all cases, but I would suspect that the docs would not remove a partially functioning kidney. Also, in pkd patients, often the kidneys swell to such a large size that they interfere with the function of other organs. Once the kidneys are not functioning enough to sustain life and if they are causing problems (or interfering with the ability to have a transplant) it is not uncommon for one or both to be removed. It is done, however , on a case by case basis.
thanks for the info corvah, i seriously very much DO know you have alot of good info that you always provide here and I DO always read your posts since you have been in a much more severe and ongoing kidney situation than i have. and i also have always very much respected all you have to say to the people here. but honestly, the post that was made just REALLY kinda freaked me out, ya know? its just soo radical, i guess that is what really got to me personally. i would just(and this is JUST me here) be really afraid, and it could just all by an in my head thing here, to actually have both kidneys removed without actually just having that solid donor in place before that gets done?
thanks for the info hon. and believe me i DO definfitely know from my own PKD just how totally enveloping both inside and out both my kidneys and my liver and other insane areas where these little suckers have popped in on me, the true overall IMPACT of what too many/much overly enlarged organs can just 'do' to the surrounding ones. ya kinda feel THAT like 24/7 unfortunetly. the thing about what actually creates that real enlargement with this disease is that these globs of cysts do not actually cause true "swelling' of the organ, but they force themselves actually into good healthy tissue and actually push it out of the way? that is what creates in some cases, kidneys the size of a freaking football in some patients, just the really healthy tissue being pushed to make room for globs. this is the main reason why it actually takes sooo freaking long for actual lab changes to occur with this disease too, despite what appears upon US to be major destruction going on along witn distortion of tissue too. only BECAUSE that healthy tissue is still there and still astoundingly functioning despite the globs. i am just hoping that boben can find a donor much sooner vs later here. thanks again for all you do here hon and also what i have learned from you too. marcia
i am just curious as to the actual size of what that kidney was they removed? this is what i am worried about most with my PKD? the sheer size of my organs invloved and what has to be being impacted in me too? but since my labs havbe been within all normal ranges so far,i seriously don't want to have to go that route,ya know? they are just getting wayyy too big, along with my liver involved with cysts too,for my small body size now.
hope everything went okay and your doing fine now? thanks for the update.marcia