Gotta have faith

Do you ever get the overwhelming sense that your world is spinning out of control and you have absolutely no way to slow it down or make it stop?

*sigh*

Me too.

Daddy’s visit to UAB yesterday didn’t bring great news. It seems as though his kidney function has dropped again, meaning our time to find a donor match is getting shorter. The doctor also let him know that without a transplant, his life expectancy on dialysis is about five years. Which also happens to be the average wait time on the donor list.

Even though I’ve been advised against it, I’ve decided to schedule testing to see if I inherited PKD – with the sole intent of donating a kidney to Daddy if I test negative for the disease. From my understanding, the first test will be a simple ultrasound to see if there are already cysts present. If so, obviously I have PKD and I won’t be able to give my dad an organ. However, if they don’t see cysts, it could because I’m young and the disease has not progressed very far. To rule that out, a genetic test will have to be done, which involves sending blood work to one of the only two labs in the country currently capable of testing for PKD. Then we’ll wait. Eight weeks, I think. Which will be excruciating, I’m sure.

Best case scenario, the test will come back negative and I’ll set up lab work at UAB to ensure I’m a good match for my dad. Then, if my prayers are answered, Daddy will receive one of my healthy kidneys as soon as possible – which, considering all of the testing that has to take place in the process, will probably be well after the beginning of the year.

And because I overthink everything, I also have to brace myself for the worst. The initial ultrasound could show multiple cysts, making the genetic test unnecessary. If that’s the case, I’ll be a woman on a mission to find another donor for him.

Everyone keeps asking me if I’m okay with finding out. If I can handle it. If I want to know. Yes. Yes. And yes. Because there’s a 50 chance that I can help my dad, and that’s good enough for me. Will I be a nervous wreck waiting for the results? Probably.

I keep reminding myself that if the results are positive and I do have PKD, I’ve had it my whole life. It’s not like I’ll find out and BAM: suddenly I’m sick. Chances are, it will be several years before I start feeling the effects of the disease. And who knows? With the hard work of everyone involved with the PKD Foundation, there could be a cure or at least a viable treatment by then.

Anyway, to make a long story short, my family could really use your prayers right now. And please don’t forget to visit my page at http://www.pkdcure.org/heatheroquin.

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Comments
6 Responses to “Gotta have faith”
  1. Trudy says:

    Wow, I’m sorry to hear that your dad is not doing as well as you had hoped. God bless you Heather for taking the steps necessary to find out if you are an eligible donor. I would do the same thing for a family member. I will certainly be praying for all of you and hope that you are a match. If not, I will pray that God finds a suitable match for him quickly so he can enjoy a nice, long, healthy life!

    As far as the long wait, you just need to compare 8 weeks to a few more decades that your dad could have, then it shouldn’t seem quite as bad!

    Blessings to you and your family Heather!

  2. Jen L. says:

    Oh, gosh,honey. I have literally been exactly where you are and it’s terrifying. You’re so brave to go through the testing and to donate–I would have done the same for my mom, as I’m sure you know. And you won’t be sick just because you get a positive result, if that’s what happens. I had a child and continue to live a full, relatively healthy life with this disease. Keeping you in my prayers. Don’t hesitate to call me any time because I have been in your shoes. Love you.

  3. kim says:

    Heather I’m praying for you guys. My really good friend’s dad just went through a similar thing with his liver and just when it looked hopeless he got a new liver and is doing well. I wish for the best scenario for your dad. He’s obviously raised a wonderful and might I add beautiful daughter who could be so thoughtful and giving. I just love this picture of you two!! Hugs.

  4. Heather says:

    I’m so sorry to read about the news. I will be praying hard for you and your family. I pray that you will be able to help your dad. Keep the updates coming girl!

  5. Heather says:

    I’m equally sad and inspired by your entry, Heather. On one hand, you’re having to deal with the possibility that you have a disease that will someday require you to find a donor yet you are choosing to fiund out for the 50% chance you can be that person to your dad. Wow. That’s all I can say. You are so strong, and I’m 100% in your corner.

    Sending you virtual {{hugs}}!!!

  6. Dan says:

    Sorry to hear about the bad news. Good luck on the testing and/or finding a kidney. (And good luck with the PKD test yourself!)

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