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Friday, April 22, 2011

Kidney Update: Now it's my turn.....let the fun begin!

(Previous entries: One, Two, Three, Four, Five, Six)
If you would like to be tested to donate your kidney to me please call 314-362-5365 OR 800-633-9906 OPTION 2

It's been a while since I have had time to type out my update. You know how it is.....even sick people get distracted by their own lives.

I have been on dialysis for more than a month now. It's going mostly well. The fills can be uncomfortable-the prescription calls for a fill volume of about 1200, so it ends up feeling like I have eaten waayyy too much food. Uncomfortable, but tolerable. The drains are most of the time kind of painful. When I get in the wrong position it feels like a hundred little pinches. The problem is I am not use to being pinched on my insides, so it really is not fun. Anyway, all things considered it's going fine and for all the minor inconvenience I can only assume it is better than option 3.

I finally saw the doctor this past Wednesday for the first time since starting dialysis. I had done a 24 hour collection (yes, of pee....all of it. What comes out of me and what comes out of the machine.) and they took about 35 vials of blood two weeks before. At this visit she went over my "kinetics" with me-which is essentially all the measurements they took from my output and my blood. Things are look fine. I am still eliminating wastes through my own kidneys and obviously through dialysis, so while my creatinine is going up, (this simply means my over-all kidney function is getting worse) with the help of the dialysis I am getting what I need to stay away from option 3.

All of my other blood levels looked good. I have been taking my binders with meals-I take calcium acetate to keep the phosphorus levels down in my blood-and my high blood pressure meds to keep that whole deal under control. I am taking 3 of them at this time. She did change two things this last visit. One was my red blood cell count was getting pretty low again so I am back on on the Procrit shots every other week. The other thing they found was too much calcium waste in my blood so they put me on an active, prescription form of vitamin D. There is the worry of osteoporosis because of leeching calcium from my bones. This will guard against that. This makes my total daily prescriptions up to 5 per day and a shot every other week. Not too bad I guess. I hear it gets really crazy with pills once you get on the anti-rejection drugs after transplant. That's ok. No doubt it's worth it.

So I go Monday the 25th for all my testing. In order to qualify for a transplant I have to have a full battery of tests performed. I chose Barnes-Jewish as my transplant facility. On Monday I will arrive there at 7 am and leave sometime between 4 and 5 pm. I get to start out with some blood tests, chest x-ray and possibly an EKG. Next, I will get a Pulmonary Function Test. Later there is a Transplant Education Class, a Physician Interview (where the physicians will decide if they want to give me someones kidney) and finally a Social Work Consult where I will learn about how much all this is going to cost me, if I can afford it and what options are available to me for assistance. It will be a very full day.

Obviously I am a little worried. They won't give me a kidney if they find something else wrong with me. They won't give me a kidney if they think I can't afford the on-going treatment and drugs for the rest of my life. They won't give me a kidney if they think I will not take care of it. So, while getting a kidney is still my ultimate goal, this is but one more hurdle I must cross before I get one.

There will be a lot of information to absorb. I'm sure they are going to bombard me with facts and figures and leave me with even more questions, but hopefully I will feel better after a coule of days digesting it all. I will have to take notes or maybe I'll film some of the informational stuff, then I could watch it again and again if I need to.

Though I am going through my testing next Monday it will be no less than 2 weeks before I get word as to whether or not I have been approved. It may even be some longer because they often require further testing of candidates. But, as always, as soon as I know, you will know.

Thanks for keeping me company through this. It's nice to know you're there.