A lot of it comes down to "my numbers". These include a variety of blood tests results, blood pressure and urine sample testing (oh yeah - kidney patient = a lot of pee talk). I visit my nephrology clinic every 2-3 months to do a round of blood work and talk to my specialist. They look at things like creatinine (more on this later, but lower is good - higher is bad), hemoglobin (how much oxygen is being delivered to my blood cells - lower is bad, 110+ is good), how much protein is being spilled with my urine, how high my blood pressure is (currently sitting around 157/89 - and that's with 3 different meds *yikes*) and other mineral levels in my diet (potassium, sodium, calcium, and phosphate are the big ones). Based off of all of the numbers my nephrologist has available to him, he is able to calculate the longevity of my transplant.
4 months ago he was able to calculate that there is a 90% chance I will need another transplant in the next two years. At the time, I went through a lovely period of denial. Absolutely not, this is NOT happening to me...again (...again). I have this "ability", if you will, to suck it up and carry on to the point where it is not uncommon for me to not realize how tired I am. I can make myself get up and do things anyways. So when my nephrologist told me we were going to start preparing for another transplant, my response was:
Well, it turns out I'm not fine. I'm tired as f
What's the next step?
The next step in my mind is avoiding dialysis. I have started my pre-work up stuff (x-rays, blood work, ultrasound, etc.) to get myself as ready as possible so that when we find a donor, we can set a date and get going. As far as donors go, my sister has the same blood type as me, so she has started the first stages of getting tested to see if she is a match. To be honest, I'm not sure what scares me more - her not being a match and having to keep looking; or having her be a match and me taking my little sister's organ...both options kind of suck, but this is something I am working through (AKA - she keeps telling me to get over it).