Living with PKD: Sergio’s Story

Living with PKD has been a constant struggle for me but for you to better understand my story, I’m going to start from the beginning when I was first diagnosed.

Back in early 2015, I decided to get myself looked at since my father was recently diagnosed with the disease. My father didn’t really provide many details about the disease, other than it was hereditary. I went to my doctor at the time and he recommended I get an ultrasound after I told him my family history of kidney problems. The ultrasound itself wasn’t that difficult but the results from the ultrasound were very disappointing because they brought the whole situation to life as a real thing.

I was then officially diagnosed with Polycystic Kidney Disease.

My doctor wasn’t satisfied with the results of the ultrasound. The images weren’t clear enough, so he told me to get an MRI. This procedure was a little more difficult since I had to drink Barium Sulfate for them to see if I had any cysts anywhere else. I honestly can’t remember what it was for, but I know it wasn’t pleasant at all. They injected saline into my veins as well which was a little painful. The nurse told me that it would give me a burning sensation and that it would make me want to go pee (which it did).

After that ordeal was over, they found that I had kidney stones in my kidney, or rather, staghorn calculi which is worse than kidney stones. Staghorn calculi is a type of stone that grows and branches out into your kidneys. After learning that I would need to have surgery to breakdown the Staghorn Calculi, I have multiple cysts in my liver and kidney, and that my kidneys were larger than normal kidneys, it was just too much for my brain to handle.

Not only did the physical implications worry me, but I was also worried about how this would this cost me in future hospital bills. Fast forward to today, 3 years later, and I can feel the symptoms getting worse.

Let me explain; My day begins at 4am. I get up to go urinate because my bladder is full, and I can feel the discomfort and pain in my abdomen. This happens every morning. The amount of pain is very unpleasant when I hold it for more than a minute, so my body wakes me up to go pee. I go back to sleep and then a couple hours later I wake up, all groggy and weak.

The pain in my lower back that comes from the kidney area is so intense that the only relief I get is curling up in the fetal position and covering myself in all the covers; the warmth provides some comfort. I gradually get up and drag myself to the shower. The heat from the shower also provides some relief as it relaxes the muscles in my back, which are tense from being in fetal position for most of the night.

My work day is always the same. I get up to go pee every 30 minutes, but my anxiety plays a big role in my pain as well. The more nervous I get, the more pain my kidneys produce, which then makes me more tense. I sweat so profusely in my hands and armpits that it’s a little embarrassing at times.

I recently told my coworkers about my disease, which was stressful since I couldn’t articulate into words the pain I felt every day. They didn’t know what the disease was. They had this very confused and lost look in their faces, like it was something so foreign, but I can’t blame them.  If they have no reason to know about it, it’s the usual reaction I get from people. They told me, “I’m sorry you’re going through that” and they just went back to what they were doing. Which is understandable since everyone has their own problems and don’t want to worry about someone else’s.

They only way I really cope with this disease is through talking to people that are experiencing the same things I do. I’m able to do this through the support group for PKD I joined on Facebook. I’m genuinely scared for the future of my kidney health. I physically feel they are failing, granted I haven’t been checked since I went to the ER for the kidney stones I had removed back in January. Nonetheless, the pain isn’t getting any better. I hope you understand I just didn’t start feeling symptoms when I was diagnosed. Throughout the years I had symptoms like UTIs, flank pain, foam in my urine, etc.

The author: Sergio G.

I hope by reading this it gives you a small understanding of the daily life I live with constant pain and stress. I’m not writing this for sympathy or for you to feel sorry for me, rather to express my emotions and pain to other people.

Thankfully I’ve had a supportive family and an amazing girlfriend that understands my situation that do what they can to help me. Hopefully if you know someone suffering through some sort of sickness that you offer some sort of support because you never know what they might be going through.

To donate to Sergio’s GofundMe to help him with his hospital bills click here.

 


Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu