Living with Polycystic Kidney Disease

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Living with Polycystic Kidney Disease

Postby PriscillaVillalobos » Thu Jan 16, 2014 8:27 pm

Hello, I am working on a school project in Biology about polycystic kidney disease. I was wondering what is it like to have polycystic kidney disease. How would you describe it and how does it affect your daily routines? Your help will be highly appreciated.

Thank you,
Priscilla Villalobos

PB2009

Re: Living with Polycystic Kidney Disease

Postby PB2009 » Mon Jan 20, 2014 7:42 pm

Hi Priscilla,

I have PKD, which I inherited from my father. Right now, my kidneys are functioning at 75% capacity. I have blood pressure problems and have had for a while and is being treated with blood pressure medication. I am currently trying to lose weight and increase my exercise levels. Both of these are supposed to help the kidneys in various ways. I have a lot to learn about PKD even though I have watched my father go through kidney failure, dialysis, and two transplants. In addition, I am researching the best dietary changes to make that may help to slow down the deterioration of my kidneys. I have had two kidney infections in the past 5 years, and may have had kidney stones once (doctors weren't entirely sure. But, I can tell you I was in SEVERE pain!). I wish you good luck with your project! -PB

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Re: Living with Polycystic Kidney Disease

Postby pmiille » Wed Jan 22, 2014 10:18 am

Hi Priscilla,
I have known that I had PKD for over 10 years. I work full time. And to anyone who doesn't know that I have PKD, I would appear to be perfectly healthy. I think the most valuable thing about knowing that I have PKD is that it makes me more aware of how I live my life. I am more cautious about what I eat, what I drink and what medications I take. The PKD has caused me to have high blood pressure which I control with medications. It has also caused me to have acid reflux from the kidneys pushing around the other organs inside. I have had problems with anemia because as the kidneys fail, they lose the ability to control the iron absorption. I do have a bigger than I would like belly because of the increased size of the kidneys. Everyone with PKD is different. Some have to deal with pain from the cysts and infections. Some have aneurysms. I have been fortunate to not have too much. Living with PKD is just living normal with paying a bit more attention to things that will affect the kidneys. As I get closer to needing transplant or dialysis, I know that my "normal" will change. Good luck with your project.

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Joined: Fri Dec 20, 2013 8:20 pm

Re: Living with Polycystic Kidney Disease

Postby ganncamp » Sat Jan 25, 2014 6:58 pm

Here's what I sent the FDA last summer when they asked for patient testimony on the impact of PKD:
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I was six years old when I understood that Grampa's special chair was where he sat when he dialysed. He had to do it three times a week and it made him very tired. But he had to do it or he'd die.

I was eight years old when I understood what Polycystic Kidney Disease is. Understood what a dominant gene is. Understood that my Mommy might have it. That I might have it. And that if I did, I wouldn't know until I was in my 40's - when I might have already passed it on to my children and they might already be having their children and passing it on to them.

It was right about then that Vincent Price's Fall of the House of Usher came on public TV. I caught just a little of it before I was sent to bed. What struck me then and has stuck with me since was Vincent revealing the family curse: Everything appears normal until a certain age, he said. And then the curse strikes.

Just like PKD.

I was eight years old when I decided I couldn't impose that curse on anyone else. I decided I would not have children.

As the years passed, my Grampa grew thinner and weaker. He was on the transplant list, but with every birthday he moved further down on it. He lived with more and more pain, until it became his world. When he died, he was glad to go.

In due time, my mother was diagnosed with PKD. She was terrified of losing her health insurance. That fear guided every career decision she made - even before she was diagnosed - and there were many times she traded the chance of better circumstances for the security of uninterrupted coverage.

She started dialysis at 46. Miraculously, she received a transplant - a perfect match - a year later, and is still healthy today, 16 years later. I try not to think about the normal lifespan of a transplanted organ.

I was diagnosed last year, at the age of 41. I was devastated. But I will not pass PKD on to my children. I never had any.

My great grandmother complained a lot about being tired and then died. They thought it was anemia. My grandfather dialysed when they were still figuring out the science of dialysis, and died in agony. My mother and her brother received transplants and take a raft of drugs every day. I don't know that her diabetes was caused by the anti-rejection drugs, but I wonder.
-----
As a postscript:
I try to tell myself that it gets better for every generation, and I'm hoping the drug companies come through for me. In the meantime, I watch my salt, limit my protein, drink so much water that I never sleep through the night, and get as much exercise as I can. I know that some people die never knowing they had the disease, but that's not the course it takes in my family. I have to assume that I'll be in renal failure in a few years. I hope to find a living donor for a transplant, but I have to plan for dialysis.

I can almost talk about it without crying now.

Sasperella33

Re: Living with Polycystic Kidney Disease

Postby Sasperella33 » Wed Feb 04, 2015 7:00 am

Hi Ganncamp,
Your story moved me to tears and I see myself in it. My mother was diagnosed when she was pregnant to me and one of her kidneys failed. My older sister is now pre-dialysis. I was diagnosed in my early 20s with PKD and regretted finding out as it can really feel like a death sentence. I've watched my mother struggle more than I care to remember and her quality of life slipped away, even though she had a very successful transplant which she still has 33 years later.

BUT, all this aside, when I feel like I'm getting depressed I just try to reason that 1. Everyone will die (obviously) but 2. more to the point , everyone will probably get sick from something and have health issues in mid to later life. The only difference with us is that we kinda know what we're going to suffer from and unfortunately we have had a long time to dwell on it because we saw our relatives suffer or/ and we got early diagnosis. But that is still no different to everyone else who will be diagnosed with something at some point in their life. I think that's worth remembering and not getting too negative about our situation, particularly when we're not sick or have symptoms. What a shame to waste the good years worrying about the bad?

Which brings me to my next point. I respect and understand your decision not to have children ( and it doesn't look like I will have any either, although for different reasons) but again, anyone can have a sick child, or a child born healthy which then gets sick. So, don't beat yourself up over it! Live your life , have children if you want to and hope for the best.

The more I think about it, the more I think the psychological aspect of having PKD has the potential to be worse than the physical. Particularly if there are lots of healthy, symptom free people preempting a disease they may or may not experience. Hope I'm not overstating things.

I'm grateful you raised the issue. It's a hugely important one.

All the best

Ithka

Re: Living with Polycystic Kidney Disease

Postby Ithka » Wed Feb 04, 2015 4:30 pm

I too found out at a very early, 5 yrs old, due to family illness. In my case, it was my father that developed cancer and brought the PKD to our attention. While the drs tried many new treatments, nothing was successful and my main memories of my father are of him wasting away and eventually dying when I was 7. He was 29. Throughout my entire life I have gone in for, at least, yearly check ups but never really spoken to about what was going on. All I ever knew, until I was able to research myself, was that I had dad's disease and that it roughly follows the path of the family. I didn't figure I would live to see 18, but never expected 30. Like you, I made the choice very early on that I would never have children and pass this crap-shoot of health on to them. I am 33 years old now and while I have done many things in my life, I have no ability to plan permanence and fight endless battles of depression. With each round of random illness, overwhelming fatigues, or ongoing elevated pain I have less urge to keep fighting.

This may not be the best place to say all this, but I don't know what to do at this point. I am the only one in my family with this issue as it passed from my dad's side and I don't have contact with the ones still alive, not since his death. I feel completely alone in this and can't figure out why I can't just get over it, as my mother so often advises.

Does anyone else find themselves almost debilitated by depression in relation to PKD hanging over their head and chronic symptoms? I feel like everyone thinks I am faking it/a hypochondriac when I have issues simply because I don't look sick.

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Wha would I want people to know?

Postby iMom » Sun Feb 08, 2015 9:51 pm

I read these stories and found myself in parts of all of them. I appreciated and identified with the courage. I felt and experience the depression. I understand the pain, worry, and fear. I push myself to live the joy, the peace, and the acceptance. All this in about a month.
I am 41 and just diagnosed last month. Right now, I can't decide whether to march on and live the good days that are left, or curl up and wait for the bad ones. I find myself mourning the loss of a backyard barbeque with burgers and fries while eating the salad I know is best for me. I feel like I will burst from so much water, but if not for the water, then the bloating that my cysts and swellingkidneys are causing. Even still are the constant pops and pings I feel, which I know know are cysts twisting and popping, which is then followed by a predictable feeling of "coming down with something and an elevated temperature." The best part of these feelings is that I now know what they are. The bad part is that I know they will only get worse.
What would I want people who are researching this to know? I'm glad I have been given something I can reasonably fight. It isn't a death sentence. I'm sad that my life will be quite different from January 13 forward. I'm scared of what will come. I'm worried about my children - how they will cope with my illness, whether they will have inherited it themselves, and if so, now they will feel about me deep down inside as they suffer with something they got only from me. I am the only known person in my family to have this, yet I suspect my father did as well, but haven't seen him since I was 10 years old. Thanks for leaving something for me in your desertion after all. I could go on and on. What I would most want people who are looking to find a cure for this to know is, I appreciate everything you are doing for us. Please do it faster - for our children.

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Joined: Fri Dec 20, 2013 8:20 pm

Re: Living with Polycystic Kidney Disease

Postby ganncamp » Fri Feb 13, 2015 5:00 pm

Hi Sasperella33, Ithka, and iMom,

If reading my story made you feel less alone, then I'm glad I told it. But I certainly didn't mean to bring anyone down with it, and certainly not fellow sufferers.

It's been over a year and a half since I wrote that piece and since then I've come to a better place. Now, I go days without even thinking about it. Of course, I drink plenty of water, but I've always done that, and I keep an eye on my diet. Other than that I try just to live my life.

Actually, being diagnosed has ended up being freeing in a way. When I got the diagnosis at 41, I did some quick mental calculations and figured that I needed to do all the traveling I'd ever want to do in the following 5 years. I'd put off traveling in the past partly because of money and partly because of inertia. But now I had a deadline.

That deadline was one reason I accepted the job offer I got last year from a small foreign company. The job requires some travel, and my plan is to combine overseas work trips with vacations. I hope to put that plan into action in April.

Of course, the reason I could accept the offer was because of Obamacare. Like my mother before me, I used to make my career decisions with an eye to insurance coverage. Feeling like I couldn't leave jobs that didn't thrill me was part of the burden of PKD. I'm in a field where freelancing can be very lucrative, but of course you have to provide your own benefits. What if I took a risk career-wise and suddenly needed lots of health care? Without PKD hanging over me, I'd have figured the odds of being in a car wreck or falling down an abandoned well and probably gone for it. With PKD, I knew it was only a matter of time.

But now insurance is no longer an obstacle, and energized by my deadline I feel like I'm finally grabbing life like I should have done decades ago. I'd give a lot not to have PKD in my family, but "it is what it is", as they say. Now I just concentrate on living the best life I can (while prudently tucking away for the lean years I know will come). In the meantime, I'm trying to grab life by the balls. I hope you will too.

Kimberly

Re: Living with Polycystic Kidney Disease

Postby Kimberly » Fri Feb 05, 2016 4:54 pm

I was just diagnosed with PKD after a bad car wreck. A MRI revealed that my kidneys had numerous cysts. I was sent to a kidney specialist last week. She told me that I have stage three chronic kidney disease. I knew that I had a chance of having the disease since my mother had it. It never occurred to me that it would have progressed so rapidly. My kidney function has decreased 6 percent in a year's time according to lab results. I have severe back pain but I was in a very bad car wreck and have had back pain since. If it wasn't for the wreck I wouldn't have known that I have the disease. I watched my mother suffer for years. She was on dialysis and had seen several doctors/specialists from several states. (She also had polycystic liver disease). My mother was in the the hospital in Kansas City when they removed both kidneys. She developed infection and they couldn't give her a kidney. She was there for over a month and was getting ready to be released when she died of an embolism. She was 58. Her mother died of a blood clot at 56. Both my grandmothers had brain aneurisms during their lifetime which puts me at a very high risk. It's depressing to know my family history and the fact that my two children have a very good chance of having the faulty gene too. I am about to undergo a lot of tests and will see the specialist again in two months. I am scared to actually find out the size of my kidneys as the specialist could feel the kidney by pressing on my stomach. (Not a good sign). I appreciate reading other testimonies regarding this disease. It reassures me that I'm not alone and fear is normal. I have pains in the abdomen from time to time but I just assume everyone has pains now and then. I pray that all of us will see advancement in treatments and maybe one day a cure. God Bless each of you.

paul614

Re: Living with Polycystic Kidney Disease

Postby paul614 » Fri Feb 12, 2016 6:06 pm

Maybe I'm one of the "luckier" ones. I did not know I had the disease until I was 53 years old. My mother is even luckier - she only found out she has it because I asked her to check her imaging results, and sure enough, her kidneys and liver were "carpeted with cysts." Thus I know the source.

My gfr is down to 34 (low normal is 60) and I have had cysts rupture, leading to internal bleeding, twice in the past two years requiring hospitalization and a few months of recovery from severe anemia. That's tiring but office work is still possible. My kidneys are quite large, so forget about that six-pack because I have a 40 on each side.

Since finding out I have the disease, I've done only a reasonably good job of eliminating sodium and controlling my weight. These posts remind me to do better. With no treatment available, we are left only with the standard guidelines for maintaining kidney health. It's easy to forget I have to be vigilant when I know only one other person with this disease.

I made sure to let my mom know that my quality of life is still pretty good and that I had 53 years of normal life, so she should absolutely not regret giving me life. In another stroke of luck, my sister and brother didn't inherit this, and they have children whereas I do not. It dies with me, and hopefully not for a while.

One thing I do that nobody has mentioned yet - I avoid anything with contact or possible the possibility of a fall. An impact to the kidney - from back , or since mine are large, even from the front - could cause damage and severe bleeding.

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