I called my Kidneys, Polly and Sis.
– I have Polycystic Kidney Disease (PKD)
There is no cure, but there is hope! Check it out.
It’s more common than Down Syndrome, Cystic Fibrosis, Muscular Dystrophy, Sickle Cell Anemia, Hemophilia and Huntington’s Disease, combined. It’s the most common life-threatening genetic disease, affecting more than 600,000 Americans and an estimated 12.5 million people worldwide.
In PKD, cysts are found primarily in the kidney but they can also affect other organs, including the liver, pancreas, spleen and ovary. Protrusions may occur in the walls of the large intestine and in the walls of blood vessels in the brain, where they may cause aneurysms. They may also be found in the abdominal wall, causing hernias. In addition, the valves of the heart may be involved, becoming floppy and resulting in a heart murmur and / or A-fib in some patients.
PKD is a dreadful disease…
Kidneys are normally the size of your fist. In the earlier stages, my kidney were very large at least 9½ inches across, as much as they could see. [they extend down past my navel] UGH! So between having two enlarged kidneys and an enlarged polycystic liver, it often made it hard to breath and eat. Yes, and then in End Stage 5, in order to continue living you will need dialysis or a transplant.
I was on Dialysis 4¾ years. Peritoneal Dialysis for 3¾ years, and Hemodialysis for 1 year.
That is not the whole story…
- The Decades of dealing with chronic ‘discomfort’, a.k.a. PAIN, but you smile and tell yourself… ‘It’s not there’.
- The physical & chemical changes happening: chronic anemia, high blood pressure, lethargy, You become a chemistry experiment as they constantly switch meds in and out.
- Finally, your kidneys continue to expand over the decades, filling your abdominal cavity, squeezing out your other organs. You lose lung capacity, stomach room, have intestinal / bowel compression, nerve issues, and consistent high blood pressure issues from the kidneys pressure on the veins and arteries. Plus there is the possibility of secondary para-thyroidism. You look like you’re pregnant with twins. I called them my twins, ‘Polly & Sis’.
- Most people never knew my struggle, of trying to ignore my pain & discomfort, and trying to stay well, because I was always smiled and singing, I was ‘Happy to be Alive’. Living & sharing happiness… Too many miserables out there, I refused to join them.
They will be taking both kidney out, it’s called a bi-lateral nephrectomy. They need to make room to receive a transplant. (I will be doing Hemodialysis now) How much do you think they will weigh? I say about 25-30 pounds. What is your guess? They were about 40-45 lbs. They were actually cube shaped. My right was 16½” x 16½”, left was 14½”x 14½”.
December 2013 – The Greatest Christmas ever.
Christmas morning I got a call for a kidney. I was not to eat or drink all day, just wait for their call with further instructions. They finally got back to me that evening, evidently it took some time to go and harvest the kidney, then run the biopsy on it.
I got the call when I finally decided to call it a day and go to bed. I was tired of waiting all day. When the call finally came and I was right out the door with the car running before my family was even dressed. 🙂
They gave me 2 kidneys… Yes, TWO… Thank you Lord.
Donate and Be an organ donor, and don’t forget to make your family aware of your wishes. -OmaEagle