As time passed, the pain intensified in my lower back. I winced with pain at every imperfection in the road’s pavement. I was a teenager and my family and I were headed to Myrtle Beach, South Carolina, for a family vacation. It was a nine-hour drive from Pennsylvania to our rented condo in Myrtle Beach. I was sitting in the back seat, well aware of what was causing my pain. I was diagnosed with PKD at the age of 10 and quite familiar with cyst bleeds. I knew the long car ride was irritating my enlarged kidneys. I did not tell my parents how I felt, in hopes that it would subside once we arrived at the beach.
Without any intention, I was the child that always got sick on vacation. I don’t know how it happened, but it was like clockwork. I would either have a cold, the flu, or in this case, cyst bleeds. I did not want to do this to my family again. Plus, I was really looking forward to our trip. I remember arriving at Myrtle Beach in excruciating pain. I kept hoping it would pass. I walked into our condo, sat on the couch and it was not long before my parents knew something was wrong. I can’t hide anything and by the look on my face, they knew it was not good. I told my parents that I had kidney pain, thought a cyst had ruptured and that I would be fine. My symptoms deteriorated quickly and we found ourselves headed to the local hospital.
My horrific kidney pain was coupled with blood in my urine and a fever. The bleeding would not stop and I spent our entire vacation in the Myrtle Beach hospital. I was too ill to handle the car ride home and had to be flown home on a medical airplane. I do not remember much of the flight. Just that the plane was very tiny and there was only room for me and my mom and the medical person taking care of me. I outdid myself that trip. This was not the first or the last time that cyst bleeds put a halt to my plans, my day or even months of my life.
Cyst bleeds prevented me from playing contact sports and participating in a lot of gym class activities. Once, they occurred while acting out a role in a school play, where I had to pretend to faint. Ruptures happened sporadically and led to hospital stays countless times. I missed the first half of my senior year in high school due to cyst bleeds. I had cyst-draining procedures performed, but nothing helped. Bleeds wound up being the ultimate demise of my kidneys. My doctors chose to remove my kidneys when the organs were working 60 percent, because my cysts would not stop bleeding. There were an endless amount of times in my life that I anxiously awaited to look at my urine in hopes that it would be yellow and not red.
I am thankful my kidneys were removed and I no longer have to endure this complication of PKD, thanks to a life-saving transplant. We never know how our kidneys are going to react. For instance, my mom has PKD but has never had a cyst bleed. We can’t predict our future, and must enjoy our healthy days, get out and live our lives fully, stay strong and with a positive frame of mind. No matter what path PKD presents for us, we must keep moving forward, whether it is on a bumpy car ride or a smooth medical plane ride.
I have never met a PKD patient that has had as many cyst bleeding issues as I have. I would love to hear from you and your experience with cyst bleeds.
I had a transplant 11 months ago. I also still have my native pkd kidney on the right. I have been having cysts pop and bleed like crazy recently. And it feels as if a knife has been dug into my kidney. I also have cystic ovaries, that hurt constantly, and pop and bleed. It truly makes you feel very badly.
I am currently having this issue. Began suddenly then pain began. Diagnosed 14 years ago and progressed to renal failure.
I am on dialys3and just learned i have private donor. It is very scary to not know if bleeding will stop. I wish you the best.
I have had pain in my kidney for months now. At first they said I had a uti but the pain didn’t subside. I went back and did ultrasound they say I have a cyst on my left kidney, which doesn’t make sense cause the pains on my right side.
With PKD you have multiple cysts on your kidneys, which can lead to pain that can radiate. Be sure to continue to speak up and advocate for yourself so you get the care you need and deserve.
On Thanksgiving morning I felt pressure during my first urination but no burning or blood in my urine like I sometimes get with UTI. When I got to my family’s house for Thanksgiving I passed a lot of bright red blood when I urinated but had no burning, or pressure. I called the after-hours Post-Transplant nurse and she wanted me to go to the ER at the hospital where I had my transplant three years ago.. Tests were run, one of my post-transplant nephrologists was consulted and I was told I had a ruptured PKD cyst. No more symptoms occurred and no typical UTI symptoms were experienced. To play it safe I was given an IV antibiotic and a script for UTI just in case. I was lucky and had no pain, no nausea, no fever, nor vomiting that sometimes happen with ruptured cysts. I was lucky since a ruptured cyst can cause serious problems.
I have polycystic kidney disease. Kidneys full of cysts. I started urinating bloody urine today. I’m not in pain though. Should I call nephrologist tomorrow?
Hi Nancy,
Yes, I think it is always important to be proactive and let your care team know if you’re not feeling well. It is important for your nephrologist to know of any changes in your health. I hope you were able to connect with your nephrologist today and that this will be a mild and short cyst bleed for you. Take good care.
My PKD has spread throughout my body, and I have the most pain in my liver,, I was told a few years ago by a doctor that it was normal for them (cysts) to “pop” and to leak , I have went to hospital several times with fever and vomiting, ,I was told that there was nothing they could do, and sent home in agony ,I literally thought I was going to die and that my family would find me on the couch. I wish the medical community would acknowledge the issues that happen with this disease, and have more compassion. The problem with this disease is that we look normal from the outside, and we are riddled on the inside, my is everywhere, kidneys, liver, and ovaries, and people cant understand that everyday is a challenge, I have not had a a transplant yet , I know that day will soon come, but I think we need bring awareness to our communities about PKD. There are new Meds available for this disease in the U.K. and if we could get them here to the U.S., then maybe American citizens will have a fighting chance to slow the progression of PKD.
I have a lot of liver & kidney pain in the Right side. Cysts on liver, kidneys, ovaries. Periods have always been painful even cramping/aching in my back & legs! Nausea usually in the morning. Uncomfortable to bend sometimes. Cyst bleeds. Stones. Gout. Oh it’s a party. “but you look so healthy” Mmmmmhmm
I can relate! My right kidney was removed in 1982, due to PKD. I am starting to experience so much pain from rupturing cysts from the other kidney. People tells me all the time how beautiful I am etc.., I hurt all the time and keep most of the pain to myself! Sometimes, I think the doctor gets tired of me complaining about how bad I hurt! I have had so many rupturing cyst but my dr doesn’t see it as being a problem. I don’t know what to do anymore! I don’t want to wait until the end for something to be done, don’t know what to do. Plus, I’m still trying to work. I don’t know what to do!!
I’m so sorry that you are enduring all of this. I agree, I don’t want you to wait until the end either for something to be done. Where do you live and what nephrologist do you see? Asking because I want to make sure that your health is in the best hands. Feel free to email me at pkdwillnotbeatme@yahoo.com and lets see if there is a PKD clinic close to you so you can see a nephrologist there. Happy to help however I can! Look forward to hearing from you. ~Valen
The same things happen to me with pain pills and Prayer I try to stay encouraged..waiting for transplant.
Dont have health insurance. Kidney problems run in my family. I do have a bugger cyst on my kidney. When they rupture do i need to go to thr doctor??? I cant afford it.
O child I feel for you. It is truly something the medical community needs to look at—more comfort measures for people with kidney disease. It is agony. I pray you will get your wish for more compassionate care.
That’s awful. IDK where you are located but I’m in NC & My hospital knows I have PKD. So basically when I go into the ER before they do anything they give me IV painkillers. I never ask for them, maybe that’s the key to it? Idk. But at least here id you already are diagnosed you can get tested for the pain & possible infection.
I had a kidney transplant almost 13 years ago and a liver transplant 3 years ago….both kidneys removed 2 years before my transplant…I also several bleeds with my kidneys and my liver was so enlarged that it was pushing my other organs everywhere…my daughter has been diagnosed and keeps a close check on hers…she is only 37…my boys..43 and 46 do not have it….thank the good Lord…hang in there people ….this too shall pass….I do agree that more research is so important.
I too have not had frequent cyst bleeds these five decades of knowledge of PKD. The first time (20s) I passed blood, no one could find where it came from. No fever, no pain, just blood, and then old blood. It took a nephrologist three years later to diagnose me with PKD and a probable bleed. My second bleed (just this past Fall) showed me what other PKDers are going through – back pain radiating to the front, fever, and just feeling rotten. I have been blessed that I have not routinely experienced this more in my life. i am currently doing well on dialysis and await transplant.
I had my first hemorrhagic renal cyst back in December. Since then I have had constant bleeding and polynephritis. Luckily, the PKD hasn’t yet affected my kidney function. I actually went to the urologist yesterday and set up my procedure with an interventional radiologist, to get the cyst embolized. Has anyone else had this procedure done, and was it effective? I am super nervous. This will be my first interventional procedure to deal with PKD symptoms.
Hi Katie,
I had cysts drained before. They were not effective for me as my cysts would not stop bleeding, which led to the removal of both of my kidneys. Good luck! I hope this is just what you need to provide you with the relief that you deserve.
Hej im stage 3 almost stage 4 renal failure. Have PKD and been diagnosed since age 9. Unusually early…diagnosed due to cyst rupturing. My teen yrs i was plagued with loads of cyst ruptures then it quieted down 10 yrs ago for i had started having them again…as i write this I am home due to cyst rupturing yesterday…but it is first time i have felt nausea with it…so im thinking kidney stone too all i wanna do is sleep.
Some times i long for to be transplanted and no longer deal with PKD..then i feel selfish..
Anyway i can relate to ur story . Wish you continued good health now
Hi Brian,
I am so sorry that you have to deal with so many cyst bleeds. I know how awful they are as they were the ultimate demise of my kidneys. I was diagnosed young as well at 10 years old. No need to feel selfish for thinking that way. I can totally understand because I am so glad that I was transplanted almost 18 years ago and do not have to deal with those nasty cyst bleeds any more. I wish the same for you! Wishing you all the best!
I had a cyst embolized years ago just before starting dialysis. I had a severe bleed and I needed 5 pints of blood during and after surgery. I still had blood in my urine for weeks after the surgery. It was very painful afterwards. Ended up on dialysis about 2 months after. Had a transplant 3 years later and just started to have some bleeding again. I’m scared this time. I wish you the best.
Hi! I’m so sorry you endure cyst bleeds, too. They are so scary and painful! I hope your transplanted kidney is doing great. I also hope you have been able to determine the cause of this recent bleed and that it has resolved. Thinking of you and wishing you all the best!
If interested you can email me or my phone is 417 850-7196. I had 100 cyst removed on jan. 8th 3 were the size of tennis balls. Only on my left side this was done at ku med center in Kansas City. I have a sister whose cyst will rupture and bleed. Very painful. I am 68 years old. Katie I would not do the procedure but I do not know your situation. I feel you have to have very skilled surgeons.
My husband had frequent, painful cyst bleeds shortly after we married. He would just writhe in pain as the blood clots passed through his ureters. Actually, his kidney function was pretty good, but the bleeds and the pain kept landing him in the hospital. Then, he had a negligent doctor who asked for an MRI with barium contrast to discover what was causing all the cyst bleeds, and the contrast sent him into kidney failure (creatnine rose from near normal to over 6 in a short time). He had a live donor transplant at age 23. No barium contrast if you have kidney dysfunction, folks, and don’t count on your nephrologist or the techs at the hospital to get it right. Ask. In the end, they left his native kidneys hoping they would atrophy, but he was in terrific agony for three years post-transplant when they finally developed a laporoscopic procedure to remove them . (He was so disappointed upon waking from that surgery to find that his kidneys hurt as badly as before due to nerve damage. It took about six months for that to subside, but the doctors discontinued all pain meds, so it was another six months of really unbearable pain.) He was only the third one to have that surgery with PKD at Mayo, so hopefully by now they have it figured out. He’s had his new kidney for 14 years, and he looks the picture of health now. He certainly appreciates being pain-free.
I was diagnosed with PKD in my early 30’s and started dialysis in my late 50’s.
I have only had one cyst bleed I’ve been blessed with very little pain from my kidneys.
I’ve been hospitalized three times for sepsis and have been told they will not put my on transplant list until my kidneys are removed.
Therefore, I have chosen doing dialysis versus kidney transplant.
I’m doing well and life is good.
Why won’t they put you on the transplant list? I’ve been on the list for 5 1/2 years now and have both diseased kidneys yet. Also have been on dialiysis for over a yr now. My doctor told me you could get on the list once your kidney funture dropped under 15%. Get some more advice for other docs. Good luck to you!
Dealing with pain right now 5 years post transplant in my native kidneys. Don’t know what to do – assume they are just withering away – maybe cyst getting ready to pop. Had only 1 real bad bleed years before my transplant when I showed up to ER and they assumed kidney stone but nothing was there. They ended up sending me home with pain pills and an hour or so after I got home, I passed blood clots (over 50) via my urine must have been the size of leeches. Not fun but never another issue. My concern and question since I’m having pain – do I remove my PKD native kidneys. Doesn’t make sense to leave them in when my transplant is working fine and any life/function they had left is probably gone anyways after 5 more years when my GFR was 18.
Wow, that is absolutely crazy how many blood clots you passed. My cysts wouldn’t stop bleeding and they had to remove my kidneys when they were working 60% because I would have died otherwise. I’ve heard so many different scenarios of some people who have had their kidneys removed and others who keep them in. I think it is based on how the kidneys are affecting the person. For me it was a no question situation, plus mine were huge and making it hard to breathe. If this is something that interests you, I suggest you have that conversation with your healthcare team and see what the risk versus benefit would be for you as it is a huge surgery. I wish you all the best on your PKD journey.
Why don’t the docs ever prescribe pain medication for this?? I can’t understand it. They just let us leave in pain with no solution. 🙁
You should consider going to a pain specialist, or have your nephrologist refer you to one. Pain management is not in the purview of nephrologist a normally.
Pain management doctors can find the best and most efficient way to treat your pain and have access and knowledge of many more kinds of mess than other doctors.
I wore Fentynol pain patches for 18 months prior to my bilateral nephrectomy because of the pain I had from cysts, ruptures and the overall size of my kidneys. These patches really did save me in a lot of ways.
TORADOL. The only thing that works for me
If your creatinine level is high they will not give you toradol; it is contraindicated.
A lot of doctors will not put you on pain meds because it thins the blood and when a cysts burst, it will be impossible to stop the bleeding without surgery. Hence; if a cysts burst and you are currently on pain meds, do not continue them until the bleeding stops flowing through your urine tract.
Pain meds turn out to be the demon that follows you home post-transplant and post-nephrectomy. Opioids permanently rewire your brain. Be careful what you wish for.
I had a kidney transplant four years ago and had my native kidneys removed 11 weeks prior to that. I had my first cyst rupture 6 years prior to my transplant and was in and out of the hospital with additional ruptures and bleeds for that entire time. I was quite anaemic at the time as well of course, with hemoglobin around 8.5-9.0.
For the last 18 months prior to transplant, I wore Fentynol pain patches 24/7 because of cyst pain and pain due to the size of my kidneys (they weighed 45 lbs. together when they were removed). I was in big time denial about my situation even then, and somehow held down a full-time job in the financial services industry and traveled two weeks a month. I didn’t want to admit I was as sick as I was.
I finally had enough one day after a big rupture and called and scheduled my nephrectomy. The first thing the surgeon said was that he’d been waiting for 9 months for me to come to that conclusion on my own.
Today, I am in good health with a good kidney (from my brother-in-law, my hero). I have forgotten all of the pain and frustration from the past, but I still remember the experience quite vividly.
I too have PKD, I had my transplant in 2011, also had bilateral nephrectomy at the same time. Kidneys were 7 pounds each. The cyst have spread to my other organs and was diagnosed with PLD. Had excruciating pain from the cyst in the liver. Thought I was over the pain from the cyst, but now experiencing different pain from other organs.
I was diagnosed with ADPKD when i was in the fourth grade and i have calcification and numerous cysts on my kidneys. The cysts have spread to other organs (and im not trying to be funny at all) but its spread to my testicles. i have agonizing pain in my back and my balls. The cysts on my kidneys are hemorrhagic. I havent met very many people with pkd like me but at least im not alone. Also in weight lifting at school we get rough and play basketball and other contact sports. Im a senior now so ive been diagnosed with it for around 8 years now. I just hope and pray that one day we can all just get new kidneys and make this disease defeatable.
#PKD #FindACure
I had very little trouble with cysts rupturing. In fact, I can only think of three times that I had ruptured cysts. My native kidneys were removed six months after my transplant because of continued high blood pressure, a condition that should have been mostly resolved with my new kidney. Each kidney weighed about 10 lbs. The doctor told me that I had literally hundreds of cysts, but they were very small that was why I did not have problems with ruptured cysts. I think the cysts were so small because I started on an ACE inhibitor very early for hypertension. There is anecdotal evidence that ACE inhibitors keep cysts small. The only other organ that has cysts is my liver, and there are only three. However, I lost my kidney function and was on dialysis before my transplant. My transplant failed after only 18 months, so I’m back on dialysis. I’m beginning my eighth year while waiting for that second transplant. I’ve been on the list for six years now.
My half-sister and brother also have PKD, but neither one is on dialysis. Both have had more problems with cysts rupturing and kidney stones than I. It is amazing how different PKD is in each person.
I was diagnosed with ADPKD at age 28- I’m now 51 with chronic pain from cyst bleeds,
how long does the pain last? My husband just got diagnosed with this after ending up in the ER because of ruptured cysts. he’s in extreme pain and it’s not even close to getting better. Been 2 days now, just curious how long pain from a typical rupture lasts.
Hi Ashley,
For me it varied. I had some cyst bleeds that lasted for a short amount of time and then others that went on for weeks. My kidneys were actually removed because my cysts would not stop bleeding. Kidneys were working 60%, but I was so sick that my kidneys needed taken out. I haven’t met anyone else in the community that had their kidneys removed because their cysts would not stop bleeding. I hope this episode is short for your husband and that his pain has subsided. Wishing you all the best!
I’m 36 years old and stage 4 pkd. I have only had 2 cystic rupture. Both times to physical activities. I deal with extreme flank and lower back pain down to my hips and legs. I have no energy and because I look healthy and try to stay as active as I can, nobody understands the pain I feel. I self medicate with bud. It relaxes my body so I’m not in as much pain. I also can’t sit up for a long period of time. Sometimes it feels like the cystic shake. Also the heaviness In my back. I get sick to my stomach. I’m scared, but nobody knows it. I work with the elderly and am a mom of 3.
I feel your pain and am in the similar situation. I’m getting to the point where I really can’t go on any longer. Now my Nephrologist says he has “ethical concerns” with removing my kidneys as my function is just above 30%.
Rebekah, I’m 38, single mother of 3. I went to the ER, @36, with back, front, side pain, as well as vomiting. I mean, it was worse than labor. I learned that I had old & they did a procedure to freeze the bleeding & remove clothes in my left kidney. I was there a week. Went to another hospital today & she sent me home with tylenol 3. It’s my right kidney this time, & it hurts so bad. I expected them to do the procedure for my right kidney, but they didn’t. I’m lost as to why, being that they said I almost bled out on my first experience.
I was diagnosed at age 28 years, it ran on my mother’s side. No has lived past 56 in our family line with PKD without surgical intervention. Except myself, I am 64 in stage 4 to 5 at GRF of 11.2%, not on dialysis yet but on the transplant list. My mother lived to 77 but had her kidneys scraped when I was a baby, she always said that made the difference. I know both my Mom and oldest brothers had cyst bleeds, but my other brother and I haven’t, Thank God! Both my brothers had cadaver transplants. My oldest brother lived 10 years and then died of pneumonia. My mother was on dialysis the last three years of her life. My second brother has a cadaver transplant for the last 18 years and is doing really good. I’m amazed at how many have stated they had their kidneys removed! even before a transplant. My kidneys are the size of footballs, but the nephrologists say .”Nope we leave them in and put the new kidney up front in the abdomen! That’s how both my brothers’ were and they had theirs done in New York. I’m in NC. Also, I was told they don’t remove the cysts anymore because it is too bloody and risky a procedure. I guess I need to check around and research these things better. Very interesting.
I am 31 and was diagnosed with PKD when I was 17. My brother and sister also have it, passed from our mother. My gran died at the age of 44 because of it. My uncle also has it and has had a transplant here in uk. First transplant his body rejected but the second has given him a new lease of life. He also still has his original kidneys. They never remove them here unless they have to. I was always pretty healthy until I had my son. My body could not cope with pregnancy and since my son was born 10 years ago I’ve had nothing but problems. My BP is always through the roof even though I’m on medication. I’m also on painkillers but I’m now on the highest dose and find that they no longer provide the relief they used to. As far as doctors here are concerned there’s nothing they can do. Until my kidney function drops I just have to get on with it. I also worry now about whether I have passed it on to my son. I have found it very interesting reading everyone else’s comments here, it’s comforting to know I’m not the only one.
What should you do if you have pkd & I’m 51 with systemic lupus and aps a clotting disorder im having horrible pain in my right back , side & around front into my ribs only ask because everyone says they don’t do anything if you go to the ER anyway.
Hi Kristie,
You should definitely speak up and advocate for yourself and how you’re feeling. Seeing a PKD specialist at a PKD clinic who truly understands that this is a common symptom would be ideal so you can get the care you deserve.
Valen, you are still my hero!! Blessings to you and all of these fellow PKDer’s!!! i’m so sorry for all that all of us have gone through but it is refreshing to finally learn that someone understands! Thank you so much for all you do to help bring awareness to PKD.
blessings…..xoxoxoxo <3
When I was around 34 yrs old I was having cyst bleeds every 3 to 6 weeks lasting a week or two. I was running my carpet cleaning business and with all the twisting and bending would injure the kidney because of being so enlarged. I did also notice that I was getting sore throats and sinus infections almost around as often as the cyst bleeds with no other symptoms. I figured my tonsils had had it so I went to a ear, nose, throat doctor and we set up an appointment to remove my tonsils. Well the week before my surgery I had a really bad cyst bleed where the pain was so excruciating that I couldn’t eat much. By surgery day I had mostly recovered from the pain but after the tonsilectomy once again I couldn’t eat much so for about 3 weeks. I hadent eaten but maybe 3 full meals worth of food during that time so I was very malnourished and weak. I took two more weeks off from work and during that time I decided to go to the movies with some friends and walking up the stairs to the theater I actually had to stop half way up sit and take a 2 minute break before I could continue. Also my first day back to work I only made an appointment for one job just to see how I could handle it. Just from pulling the hoses out of the truck into the customers house to clean their sofa I had to sit by the truck and take a break. Told the customers that they were my first job in weeks after everything I had been through but that they would get the best job but I will just take longer because of being weak. Needless to say after tonsils being removed I only had 2 or 3 cyst bleeds. I am now 42 and I am now on home hemodialysis Nxstage System One. It’s better than in-clinic and I do treatments by myself at home 6 days a week.
I had a cyst bleed December,2013 that required a hospitalization. it actually was a blessing in disguise. I had been praying that I could pop this large cyst on my right side that was beginning to cause chronic pain. One day I was playing pool with a friend and I felt as if I was having a heart attack. Later, I realized that I had a bleeding cyst. I stayed home for the weekend (in agony) but called my nephrologist on Monday morning. I was hospitalized for four days and received a blood transfusion; Aranasp; and liquid iron. My hemoglobin and hematocrit had dropped dangerously low. They had a surgeon on standby in case the bleeding would not stop on its own. The pain was the worst pain I have ever had in my life. However, after a six week recovery period I felt stronger than ever. My chronic pain was gone and I began walking every day. I believe that my cyst bleed was my bodies way to help heal itself.
Renal Rehab Believer
I am overwhelmed by the response to this blog topic. Thank you for opening up and sharing your story and battles with PKD. It has been eye-opening to learn how many of you deal with cyst bleeds. By you sharing what you endure, it helps to comfort others that they are not alone and to give them strength to keep fighting. I thank you for providing that level of support to those of us fighting PKD. Reading what all of you are enduring made me relive what I went through with cyst bleeds and how real our pain is, how our disease is hidden inside of us and how needed a cure is. Knowing what you are going through on a daily basis continues to fuel my passion to share my story and do all I can to help all of you.
I am 70 years old, on home hemo 3 1/2 years. Had cyst rupture and nephrologist says I need to increase dialysis to 4 days a week. He says inadequate dialysis causes platelets to lose effectiveness. No way I’ll do that. Either bleeding will stop on it’s own or I will find another solution. Once before a transfusion made it stop
Hi Jenni,
As a 37 year old, it gives me hope knowing that you are in stable health at 70 years old with PKD. My bleeding never stopped on its own and that is why they had to remove both of my kidneys when I was 18 and they were working 60%. I hope you are able to find the best avenue to help stop your cysts from bleeding. Wishing you all the best.
This is the best blog ever. I have had one cyst bleed and knew what it was, the GP I saw gave a Dx as nephritis but I knew better. Some of the blood I passed was clotted. Previously some of my cysts were Dx as hemorrhagic, that made the only conclusion that a cyst had ruptured. There is a lot of useful information in these posts.
I’m not sure that Tolvaptan is much of a preventive tool, however I wish it were. My understanding is drinking water and following The PKD Diet is one of the best preventive medicine steps. No salt or caffeine.
I should add that close control of BP is also key, I take 100mg Losartan QD. I understand that Losartan disrupts the ADH cycle.
I completely agree! People underestimate how important blood pressure control is!
Thank you for this great informative and comforting blog. I’m 56 have PKD and have had several cyst ruptures and bleeds. Can’t express how painful these are, basically writhing pain, keeled over, pain you can’t escape from and it lasts. Hospital visits end up with IV morphine or other strong opioids which made me sick. This lasts days until it slowly resides. Have had ruptures back to back. On home PD dialysis daily and listed at UCLA for transplant. Do the damaged kidneys need to be removed before transplant due to the rejection medication post transplant precluding effective healing post-op.
Thanks again.
Hi Mark,
It makes me so happy to know you enjoy my blog posts and that they are comforting. I’m very sorry that you endure cyst bleeds. They are awful!!! Nobody could understand the pain other than those of us who have endured them.
As far as removal of the kidneys, it seems to be case by case. Mine were removed because my cysts would not stop bleeding and then around 7 months on dialysis and then received my kidney transplant. I’ve met people who have had them removed during the same operation as their kidney transplant and then others following their transplant. And some people receive a transplant and their native kidneys never get removed because they aren’t causing them any issues. Hope this is helpful. If you’re on social media, feel free to connect there and also I encourage you to visit my website for more educational content and to view my advocacy efforts where you can listen to podcasts I’ve done, webinars, speeches, etc. Wishing you all the very best! I hope you can receive a transplant very soon!!!
Mark, my website is: http://www.valenkeefer.com
Thank you so much for sharing! I’m glad you liked this post and found it educational.
Thank you for such interesting information . This is still fairly new to myself but 2 granddaughters have had it a few years. always more to learn.
Hi Pat,
You’re very welcome! I was diagnosed with PKD when I was 10, spent almost a year in the hospital when I was 18, was on dialysis and received a transplant at 19 years old. I’m now 34 and am grateful to be 15 years post-transplant. I have the dominant form of PKD versus the recessive which affects children at birth and even younger then when I was diagnosed. Are you on Facebook? If so there is a group called “PKD in Children (PKD Foundation).” This would be a great place to connect with parents who have young children living with PKD. Hope this helps!
Ever since she was a little girl, our daughter had severe boughts with abdominal pain. Nothing relieved the pain, not Tylenol, not pepto, nothing. Her doctor never figured it out. She would have severe headaches and threw up many times each incident. Like one of the other contributors to this post, it always seemed to happen during a major family event. Christmas morning, getting ready to get on a plane for vacation, etc.
Now she’s an adult with a full schedule, work, school, boyfriend. She goes snowboarding, falls and has more pain than the fall warranted, pain in her side, back, fever. Her boyfriend drives her 150 miles back to our city & takes her to the emergency room.
Doctors figure it out right away. Cysts covering her left kidney with 15% functionality left. The other one is ok so far. Since the fall she has been in the hospital 3 times with severe abdominal pain. No one has given us the diagnosis of PKD yet, but after reading through these comments it seems like a classic case.
Hi John,
Thank you for reading my blog and sharing your daughter’s story. Her episodes definitely sound like how I would feel after a cyst bleed. Sometimes a little fall would induce one or they would happen out of the blue. I would pee blood, have low back pain and a fever.
I suggest having her go to a nephrologist to confirm a PKD diagnosis and for her to get regular check-ups. I was diagnosed by high blood pressure, which can be a common symptom of PKD. Also, PKD patients can have cysts on their liver, too. Both the liver and the kidneys can become enlarged and cause pain and cyst bleeds.
If you are in need of help finding a nephrologist, I would be happy to reach out to my network of PKD patients and see if I can find a good one in your area. Feel free to connect with me on Facebook – Valen Cover Keefer – or email me at pkdwillnotbeatme@yahoo.com. If there is any way I can help, I would be happy to do so. Wishing you and your daughter all the best.
Thank you for all the information.
Hey everybody, I have PKD as well and after reading all of your comments, just know better days are ahead and keep positive. Maintain a great diet and stay active and together we can over come this. Thank you for sharing and bless you all
I’m 36 one of 5 boys, my mother had pkd as do all of us boys. Didn’t find out I had it until I tried to give her a kidney in 2007,. I’m used to being a landscaper, equipment operator. I literally have no energy anymore and just want to lay in bed. This is a terrible disease, I hope they find a solution soon. I’m debating whether or not to try to get on disability, or try to continue truck driving. Idk anymore, I wish the best for all you people suffering with this terrible life sucking disease.
Oh Chris, I’m so sorry to hear of the stage that you are at with PKD. Not sure on the function of your kidneys, but I hope you can receive a transplant soon and with that new kidney regain your energy, strength and quality of life. Hang in there. I’ve been in your position and it gets so much better post-transplant. Sending strength and love.
Donna Luciani
I am 65 years old and was just diagnosed with stage 4 PKD in December of 2018. I had been going to a Rheumatoid doctor for Osteoarthritis and after taking regular routine blood work she noticed that my red blood cell count was dropping too low over a period of time. She sent me to a Hematologist who administered a hormone shot to me to boost my red blood cell level. I am now anemic . My blood count was 7.2 and I had two blood transfusions already. I was then recommended to see a Nephrologist. (I didn’t even know what a Nephrologist was) She sent me for two ultra sounds and the first one misdiagnosed me. the results just said that my kidney’s had cysts. The second ultrasound was taken during the process of doing a kidney biopsy. The doctor had stopped the procedure and noticed I had polycystic kidneys and he didn’t have to do the biopsy (thank God I didn’t have to go through the kidney biopsy). I went back to my Nephrologist and that’s when she gave me the news. I went from 20% kidney function to 16% and I had polycystic kidneys. Everything hit me like a ton of bricks. I walked around in a fog for a month. When she told me it was hereditary that really blew my mind because she said it either had come from my mother’s side or my father’s side, well my mom died of lung cancer when she was 42 and my father a heart attack at 55. Nobody ever talked about PKD when I was little or did anyone ever die from it. I am the first in my family to come down with this disease and I’ll never know who had it that passed it down to me. I also recently had experience with cyst bleeding and it is very painful and you just can’t escape that pain until it goes away. The only thing that helped me was a pain pill. So for all of you that have experienced this painful disease I empathize with your pain and I pray every night for all of us. I pray every night and hope they find a cure for this nasty disease soon. I would have been on my way for a transplant by now if they didn’y find a mass on my thyroid and a polyp in my stomach. Those things have to be cleared before the transplant. I have two nieces that are willing to donate a kidney. Thank God for them. This website was very helpful. I have several cysts popping up inside of my body and now I know why they are there.
Hi Donna,
Thank you very much for sharing your personal journey with PKD. Some PKD patients are a spontaneous mutation and neither parents have it or passed it on. So, this could potentially be you. Regardless, I’m very sorry that you were diagnosed with PKD. Positives – one is that you haven’t had to deal with PKD until 65! I say this because I was diagnosed at 10 and had cysts bleeds all through middle school high school and spent a year in the hospital at 18 where both of my kidneys were removed and I was on dialysis. I received a kidney transplant at 19 and am still doing well 16 years later. Number two, it is so fantastic that you have nieces that want to be your donor. I’m wishing you all the best on your path towards transplant and restored health. If there is any way that I can help, please let me know. I’m glad you’ve found this blog helpful!
I’m going through a cyst bleed right now. I hate this disease!!! I try to hide everything from my family because I’m always freaking sick no matter how healthy my lifestyle. I just want to be normal. Thanks for the place where I can rant. Blessings to everyone 🙂
Hi Dedie,
I hope you’ve recovered from your recent cyst bleed. I had countless cyst bleeds and they were the ultimate demise of my kidneys, so I can totally sympathize with your pain and emotions. I appreciate you sharing your sentiments on my blog. I know it is hard to talk to family all of the time, so please know you’re not alone and I’m here if you need anything. Sending healing hugs!
I too believe I have a cyst bleed right now. I couldn’t go to work today because the pain doubled me over. But my pain is very low in my abdomen. It hurts to urinate. Temp is 99.9. I’ve called my PCP, she it out and no one is available. So I called my nephrologist to see if he can see me.
I think I have had two other cyst bleeds, one of them I had a low grade fever for a month. My PCP at the time said the only way he could see what is going on inside is a ($4000) CT scan. I reluctantly schedule the appt. and when I finally talked to my PCP office (my Dr. didn’t even call) the MA said there is nothing abnormal that we can see. “We don’t see many PKD patients and so we don’t know too much about it.” I am serious! I left his practice and have a new PCP and I see a nephrologist every 18 months. It is nice to be able to vent and read others who are going through similar circumstances.
Hi Jennifer,
I am so sorry to hear what you are enduring health wise and with your healthcare team. I hope this message finds you doing much better. I also hope you are able to find a specialist that is more knowledgeable in PKD. I have had countless cyst bleeds and can sympathize with the pain you are dealing with. With you saying the pain is very low in your abdomen it makes me wonder if you may have had a UTI. You are definitely not alone and please let me know if I can be of any help along your PKD journey.
PKD Question: My brother has PKD. He recently had a cyst rupture and has bleeding for the first time. He’s been in excruciating pain. Was in the hospital a couple days, came home yesterday, and back to hospital today because the pain meds he was sent home with aren’t helping his continuing pain. What causes the pain to pass, and roughly how long does it take?
Hi Carrie,
I dealt with countless cyst bleeds from 10 years old until 18 when both of my kidneys were removed. Unfortunately, each episode varied in severity and length. The bleed just has to run its course and the pain subsides when the bleed is resolved. I don’t recall the doctors ever having anything they could do to help the bleeds, they just did their best to control the pain. I recall them draining some of my really big cysts and also inserting a solution in the actual cyst with a needle to help when I believe it was infected. I’m very sorry your brother is going through this. I have empathy for how horrible it is. I hope this bleed is short-lived and he heals soon.
I am 66 years old and found out I had PKD when I was 28. Mom died of complications with her PKD kidneys. I have had cysts drained couple of times and relieved lots of pressure as they were quite large. Just had a kidney stone removed and now my cysts will not stop bleeding. Like snither lady said, you try to go on with your daily activities hiding the pain not wanting to complain yet you want to scream. Cysts pushes into my diaphram making it difficult to breath sometimes. Sometimes I think I should just have them removed and go on dialysis. Thank you guys for being here so I can vent with people that understand.
I just found out I have PKD back in 2010 but my doctors knew I had it since I got my first 5 kidney stones. I keep having pain on my right flank and I have been to the doctors and had test done but they can’t tell me what is going on. It started when I went to a hospital in Bahrain to have a kidney stone removed and ever since then I keep having this pain I was told in the ER once that I had a cyst burst. I just wish this pain would go away and never come back.
Hi Brian,
I’m very sorry to hear that you’re dealing with pain. Our enlarged kidneys, cyst bleeds and infections in our cysts can all lead to pain. This is a very challenging part of PKD to navigate and deal with. You are definitely not alone in regards to this side effect of the disease. Be sure to continue to speak up, advocate for yourself and find a healthcare team you trust so you can receive the care you need and deserve.
As awful as the pain is, it’s comforting knowing I am not alone in this pain. I was diagnosed at 8 years old, and have only had a few cysts hurts. Sometimes at school, sometimes on vacations. Usually it never creates much fuss, but this time is excruciating. My primary care assumed it was a muscle strain, but I knew better. I went into the ER that same night and they told me what it was. While it was a sigh of relief, it was a huge blow to my teenage-immortality mindset. But I will continue to live each day to the fullest, just as you mentioned.