Finding peace

(Check out the pretty flowers my coworkers sent me today. I work with some amazing people!)

I know I updated y’all yesterday with the results of my renal ultrasound, and in response to some of the questions I’ve been asked, I thought I’d give a little better explanation of what Polycystic Kidney Disease (PKD) actually is.

I recently told y’all that PKD is a genetic disease that runs in my family. Basically, cysts form along the nephrons (or filtering units) in the kidneys. Over time, they detach from the nephron and continue to enlarge. The cysts can range from the size of a pinhead to the size of a grapefruit. (Right now my largest cyst is approximately the size of a ping-pong ball.)

The growth of cysts, which can number in the 1,000s, causes the kidneys to enlarge, causing lower back, side and abdominal pain. Right now, mine is just a mild discomfort — nothing like my dad’s chronic pain. Cyst growth has caused his kidneys to enlarge to the size of footballs, and they weigh approximately 20 pounds a piece.

Other symptoms include hypertension, aneurysms, hematuria, kidney stones, and an increased likelihood of UTIs. The disease can also affect the liver, spleen, pancreas, cardiovascular system and gastrointestinal system.

Unfortunately, there is no way to slow the progression of the disease, and there is no cure. As kidney function declines and begins to fail, patients must either begin dialysis or have a transplant — which is the stage we’re currently at with my dad.

Daddy talked to his nurse at UAB today and told her about my diagnosis. Fortunately, I’ll be able to get a referral to see the same doctor he sees, which is somehow comforting. It’s nice to know that I won’t be going to a complete stranger — this doctor already knows my family history.

Once I meet with her, I’ll have a better idea of what this means to me in the immediate future. They’ll run tests to see how well my kidneys are functioning and what I can expect over the next several years. And I’ll be able to ask her some questions, like the likelihood of me having a healthy pregnancy one day. From what I’ve read, being a mama isn’t out of the equation — it’ll just take some precautions and careful monitoring. Of course, I have to take into consideration that I have a 50 percent chance of passing this on — so that will be a whole different conversation and decision to make when (if) that time comes.

Anyway, that’s about all I know for now. Despite my attempt to act like it didn’t faze me yesterday, the news was a little tougher to take than I expected. I took a personal day from work today and used the time to come to terms with everything. I talked to my dad for a while and researched some questions I had. Tomorrow I’ll be able to go back to work and focus on projects that need to be done, without getting lost in all of these thoughts that I needed to sort through.

Thank you all so much for your thoughts and prayers — they mean the world to me. You guys rock :) 

P.S. Check out the “Help Me Fight PKD” tab at the top of my blog for more information about how to help us find a cure.

4 Responses to “Finding peace”
  1. Jen L. says:

    I’m glad you’re seeing Dr. Bergman–she’s awesome. Asking the questions will help, as will talking to our family members. Grandma should really write a book. Love you, honey.

  2. Trudy says:

    Thanks for the information Heather…I guess I really didn’t know much about it at all. It sounds like you had every right to be a bit dismayed with the news and need to take a day for yourself. You do have a great outlook on things though and I am glad you are educated about the disease and have some great doctors to care for you and follow the progress of this disease.

    I will continue to keep you and your family in my prayers…and hope that your dad finds that match soon!

    God bless!

  3. Heather's M says:

    Heather, my heart is breaking. I’d take it all away and take your place if I could. I’ve always considered protecting you my second most important job as a mom. (Loving you unconditionally is the first.) It’s killing me to know that there’s is nothing I can do to make it go away. I know you said that you’d let me know if you need me. I need you. I need to hold you like you were my little girl again.

    Please, Heather’s blog friends, if you can, donate to PKD foundation and help raise funds that may one day lead to a cure or treatment. This is the only way I can help at this point.

    Heather’s M

  4. Kim says:

    good for you for taking a day to process the news. Not too many people know to treat themselves to that sort of thing. Beautiful flowers from your friends at work. sometimes getting a little support goes a long way!

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