In 2015, I was introduced and diagnosed with a disease called Polycystic Kidney Disease or PKD. I had no idea that I had it. One day my right side of my back started to hurt and throb. I thought it was because I was sitting in my chair without good posture. I took some ibuprofen and it went away. A week later, the pain came back and so I took some more ibuprofen and went to work. When I got off work, I came home and laid on the floor in my wife's office and kind of writhed in pain a bit. My mini Australian Shepherd Zooey came over and laid down right on me and was acting very worried, and it almost seemed like after the fact, she was trying to tell me something wasn't right.
After laying on the floor for a while, the pain started to get worse and I told my wife we needed to get to the hospital. I was sure something had burst or that I might have a kidney stone. We went to the urgent care clinic and after sitting in pain for awhile, went in the back. The FNP started asking questions and had a CT Scan done and told me that I have a disease called Polycystic Kidney Disease. I was shocked and dumbfounded and my first thought was "Are my kidney's failing?"
To jump back 10 years ago, I was getting some medical stuff done for a mission I was planning on serving for the LDS Church. When the doctor took some samples, they said I had a high protein count in my urine and that they were afraid that there may be some complications with my kidneys. They did some blood work and told me it came back clean but that they wanted to monitor my kidneys for a while. So I waited and never really heard much after that.
Back to the present. I remember the feelings I had of the initial "Your kidneys are possibly failing", from 10 years ago. A wave of fear hit me wondering if I am going to die, have dialysis, need a transplant right away etc... They had me do some labs to get blood work done to make sure I wasn't in renal failure and it came back that my kidneys were still cleaning my blood very well. (Probably from all the Coca-Cola I drank as a teenager. HA!)
Anyways, so the FNP gave me the name of a Nephrologist out in West Jordan and called ahead. He said that he was friends with her and that she would be the best one to help me. We left the hospital on a Thursday night, I couldn't even walk to the car I was in so much pain from both the PKD and the antibiotic shot they gave me. I took some pain medications and called my bosses, (who were very understanding thank heavens), and took the next day off.
We called the next morning and the Dr. Junejo (my nephrologist) said that she would be able to get me in the following Monday. I was in so much pain that I could barely get up and walk around the house. I did get up and go from the couch, bed and floor a few times just for a change of scenery. Talk about a Netflix binge. I watched every movie that had the word Jack in it! haha.
Sunday we left for Salt Lake and went to my in-laws house and stayed the night there. They were so kind to me asking what they could do and helping me with anything and everything I needed. Luckily I was able to get feeling a bit better from the antibiotics the clinic had given me and the pain medications too. Monday we went to see Dr J. and she confirmed after a round of tests that I do have PKD. She did confirm that the labs that were done and the tests she had me do in her office show that my kidneys were still functioning at 100%!! That was fantastic news and I think even Dr. J was a bit dumbfounded at the stage I was at and that my kidneys are still working as well as they were.
She sent me home to get a CT scan of the brain, MRI to measure and see how many cysts that are on my kidneys and an ECHO of my heart. Luckily, in terms of the brain I have no complications! Although the stuff they did to "light up" my brain for the CT scan made me feel like my WHOLE body was on fire! I sat up after the scan and was breathing so heavy. The technician asked if I was ok and I told him that I felt like I was laying down on a bed of hot coals it was so warm. HA! The MRI confirmed that I have cysts on both kidneys, 30 on the left and 20+ on the right and the technician there was able to show me what they looked like. It was kind of cool and scary all at the same time.
Lastly I got my ECHO for my heart. Let me tell you one thing, to hear my own heartbeat (not just the thump thump, but the swoosh swoosh too), kind of made me sick. It was cool though to see all the valves opening and shutting. They did find a small issue with my bicuspid valve (I think that's right??) and they want me to monitor it closely for the next year or so.
I must say though, that through this whole thing, that I would have been way more scared if I hadn't had my wife with me. If I hadn't had my family waiting for every word on every doctors appointment. The FNP and my Nephrologist have been amazing and so positive during the visits I had and were honest and upfront about it. My family doctor was even familiar with the disease and has told me that he would help me in every way possible and reviews any tests that I've recently had so he can stay up to date with my results.
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| My wife Becca and myself. This pretty much sums up our relationship.. |
Now I take 3 pills once a day and have a small change in my diet (which really isn't much of a change at all except no dark sodas and go light on the caffeine wahhhhhh!!!!) haha! I have medication to manage the pain if I have a problem and positive doctors that are ready to jump to my rescue if I need anything.
I found the PKD Foundation online on Facebook/Instagram/Twitter and on their website http://pkdcure.org and people that I have read their stories and blogs are so positive. I'm glad that I was able to find a community where when I feel fear, that I can go to, see stories, express concerns or fears and they are answered by many and not just a few.
Today I am posting this blog on September 3, 2015 because today is PKD Awareness day. Visit the PKD Foundation on their website pkdcure.org/aware and help spread awareness about this disease and help find a cure or treatment. Because at the moment, you can only slow it to a fast crawl. There is no halt or cure. For anyone who has questions about PKD or those who may have PKD that need some support, feel free to contact me!!! nick.dennis801@gmail.com
But that doesn't mean we can't be positive about it!
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