One of the things I constantly struggle with is the fact that I don’t want to be identified by my illness. I don’t want to be “Roberta the Diabetic”, nor do I want to walk around with a sign on my forehead reading “kidney patient”. It’s one of the reasons I don’t talk about my health unless someone asks me. I have much more to be associated with than that… like the fact that I continuously get song lyrics wrong and get giddy over gummy bears and Mexican food. 😉 Not only that, but it’s kind of boring to hear people talk about their health all the time… that being said, it IS the whole focus of this blog, so bear with me and please do not place any ugly labels on my head!
I want to make sure to answer some questions you guys have…
1. How do you donate a kidney? I want to send a HUGE shout out to all of you who have offered to help me by offering your own kidney! I LOVE YOU! I have such a HUGE respect for anyone who is brave enough and unselfish enough to offer a part of yourself to help save my life (or anyone else’s for that matter)! How amazing are you? 🙂 However, at this point in time, I will not ask you for it. I feel that it’s my burden to bear right now, and hate the idea of anyone else having to suffer with me. As long as I have an option to use a cadaver organ, I will choose that option. Not only that, but the doctors say that a kidney/pancreas transplant is more successful when both organs come from the same body…and because a pancreas can only come from a cadaver and not a live person, I’ll wait for it. If, for some reason, this doesn’t work out, then maybe you’ll hear a different tune. 😉
2. How long is the wait? In our area, the wait for just a kidney can run anywhere from 6 months to 2 years, depending on your blood type. If you are waiting for both a kidney AND a pancreas, the wait is cut dramatically, because (I believe) there is a more pressing need for anyone who’d need both organs. My estimated wait should be about 3 months…once I’m finally listed for both kidney and pancreas. As I mentioned before, I’ve already been listed for just a kidney in January 2012, so we are just working on getting listed for the pancreas. At this point, we are doing some further testing on my heart (more on that later) before they can give me the “OK”. At this point, though, because of the testing, everything is on hold.
3. Am I having to do dialysis? Yes. Four times a day, everyday. I had to start about two months ago. My body gave me a very dramatic and sudden slap in the face to let me know that I couldn’t go any further, and I ended up in the hospital for a week. After that, I had to sit through a week and a half of very intense training to learn how to do dialysis on myself. For those who are not familiar with it, I’ve chosen to use Peritoneal Dialysis (vs. hemodialysis) for my treatments. Instead of using a machine to filter my blood, it uses my stomach lining. And instead of having to go to a dialysis center to have it done, I can do it myself! How’s that for modern technology?? I chose to go on PD for the following reasons:
- I hate needles. (Yes, I deal with needles everyday with my diabetes, but have you seen dialysis needles??? Those suckers are HUGE!)
- I didn’t want to waste my time just sitting in a dialysis center every other day. I’m too young and have too much to do for that!
- It allows me to go to work on a regular schedule.
- I hate needles.
- Freedom to travel.
- It allows me to have a less strict diet.
- There is no nasty shunt on my arm for everyone to see.
- Did I mention the needles?
I currently have a long tube/catheter that comes out of my stomach right now that has absolutely KILLED my swimsuit modeling career, however, I have noticed a HUGE difference in how I feel since I’ve started the dialysis. I didn’t realize how badly I was starting to feel until I started getting better, and now it’s like the clouds have been clearing and I’m getting my energy (and appetite) back! I’ll take the tube over daily vomiting ANY day!
Sorry for the long post… I believe these will get shorter as we progress. I’ll say this until I’m blue in the face, but thank you all for your support, your prayers, emails and texts! You have no idea what a difference you make each time you send one! It truly makes my day and helps make each step in this process a bit easier to take!