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PKD Discussion Forums - View topic - Living with Polycystic Kidney Disease

Living with Polycystic Kidney Disease

Connect with others who are living with PKD and share stories and encouragement.
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Please note: This site contains user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health.
flyspyro

Re: Living with Polycystic Kidney Disease

Postby flyspyro » Mon Mar 07, 2016 5:25 pm

I was about 8 or 9 when I found out I had PKD. I have another medial Problem; it's Chronic pancreatitis. When I was about 7 years old, I started having spells of pancreatitis. The next few years I would be in and out of the hospital. As they were doing many tests, The doctors found out I had PKD too. They told my parents they didn't think I'd live out of my teens at first. Nobody in my family has PKD or pancreatitis. Doctors thought i had cystic fibrosis at first But, they did some testing and found that wasn't the case. I have some rare form of both the PKD and pancreatitis. This was caused either by a fuked up gene or everyone in my family are just carriers and I'm the one that got them both. My kidneys didn't start giving my issues till about 25 years old. I've alrdy had surgery on my pancreas when I was about 10 years old. I haven't been in the hospital for about 6 years which is the longest stretch i've ever had. I started thinking maybe I should start doing something with my life instead of waiting for shit to go down. just when things started looking up, this happens. At 25 years old my Kidneys decide to start going to shit. I'm 30 now. I have chronic pain all the time. I pee blood, I have high blood pressure. Cysts like to pop on me. I'm at 31 gfr.

How has this shaped my views on life? I am schedule to be sterilized next month. Clearly, I am a genetic dead end and shouldn't be breeding. I wouldn't want to anyways. The thought of bringing a kid in to this world with even a chance of what I have is a disgusting thought. I see the future as grim. My parents like to tell me it could be worse or Everyone has to die at some point as if that makes things better. (rolls eyes) I am depressed most of the time. I've been on SSD for depression for along time. Sometimes, I wonder if I hadn't been sick at such a young age would I be a happier person or optimistic I don't know.

This is my story.

Posts: 1
Joined: Wed Apr 20, 2016 3:33 pm

Re: Living with Polycystic Kidney Disease

Postby annj71 » Wed Apr 20, 2016 3:54 pm

Ahhh.... my PEOPLE!!! *hugs all around* I am glad that I stumbled on this post this afternoon. I'm relieved to see others in the same boat!

I am the only one in my family who has PKD - yay lucky genetic lottery! I was diagnosed when I was 38 through an MRI due to constant back pain. Back was fine the tech said but did I know that I had Polycystic Kidney and Liver disease as my organs were covered in cysts? Um, no... I had never even heard of the disease! The back pain eased up with the stopping of caffeine - no more cokes and very little chocolate. Had a hernia fixed not long after. The kidneys and liver push on my stomach and so small meals are a way of life now along with reflux meds.

It's also interesting to see how many others made the choice to not risk passing this disease along and are not having kids. As I was 38 when diagnosed I had sort of already made up my mind before that kids just were not going to be an option but once I was diagnosed, I was like yeah, there is no way now I could do that.

And while having PKD has caused pain and a good bit of grief (I cried for about 3 weeks after being diagnosed and still get teary at the PKD Walks and talking to others about it), it is true that is also has been a blessing. Like others, I decided life is just too short and am travelling more while I can. And I'm blessed that my kidneys, while totally covered in so many cysts they can't be counted (which is always just AWESOME to hear/read on reports!), are still functioning and I've only had one cyst burst in these 7 years.

Just thought I'd share my two cents.... you are NOT alone!!!!

Ann

flyspyro

Re: Living with Polycystic Kidney Disease

Postby flyspyro » Fri Apr 22, 2016 3:13 pm


Posts: 59
Joined: Fri Dec 20, 2013 8:20 pm

Re: Living with Polycystic Kidney Disease

Postby ganncamp » Sun Jun 26, 2016 3:59 pm


Posts: 2
Joined: Fri Jul 22, 2016 12:12 pm

Re: Living with Polycystic Kidney Disease

Postby phreeet » Fri Jul 22, 2016 12:17 pm

pmiille,
Your acid reflux maybe from blood pressure medication. I was taking Lisinopril for years and getting heartburn everyday. I switch to Ramipril and now I no longer get heartburn.

Posts: 2
Joined: Fri Jul 22, 2016 12:12 pm

Re: Living with Polycystic Kidney Disease

Postby phreeet » Fri Jul 22, 2016 12:25 pm

Priscilla,
I'm 44 and have 15 percent use of my Kidneys. I'm hoping to receive a transplant this year. The kidneys regulate the heart, so I have high blood pressure. I also have gout because my kidneys cannot filter uric acid properly. In addition, have high cholesterol, but the medicine does not agree with me. I also often get tired, so I drink a few cups of coffee to get myself going on work days.

I take medication every day. Ramipril for blood pressure (switched from Lisinopril due to acid reflux), Uloric for gout, and Colcrys for gout attacks (gout attacks happens when/if I have a beer)

I hope this helps.
Regards,
Zach

Helen

Re: Living with Polycystic Kidney Disease

Postby Helen » Thu Jul 28, 2016 3:16 am

Hi there? Are you still working on a school project in Biology about poly-cystic kidney disease? As far as I know, losing weight and increasing the exercise levels are great ways to get better. People struggling from this disease are often depressed. Refer in order to learn how to reduce or even beat your depression stage!

flyspyro

Re: Living with Polycystic Kidney Disease

Postby flyspyro » Fri Jul 29, 2016 5:14 pm

I'm so confused... I got my blood work back the other day... it says gfr is 20 with a bun of 44... ive heard a few things...i was told i was in stage 4 ckd and that at 20gfr that they would give a a referral to the transplant place.... but when i called the doctor she didnt say anything about it so am i wrong? or am i reading the blood work wrong... someone plz explain this to me..

Linda

Re: Living with Polycystic Kidney Disease

Postby Linda » Fri Aug 26, 2016 2:55 pm



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