06/06/2016
I need a hero. I am in desperate need of a kidney.
I have a condition called Sjorgrens syndrome which causes me to have a horrible time at dialysis. Most people feel better after their treatment...tired but better. Well, I don't. I usually feel horrible with a blood pressure in the 200's. Why you might ask? Did they pull too much fluid? Yes - and no. They typically don't pull any fluid from me because I sit and dehydrate while on dialysis, because of Sjorgrens. But - if they do pull too much fluid, my blood pressure goes crazy.
All I want is my life back. I am 49 years old, with two crazy and great kids. The youngest will be 16 in a few short weeks. My oldest is 19 and doing the best she can. She is the one that carried the burden of me for so long. She worked and went to school when I could not function as a mom or a provider. When I first started going down hill the first sign was Bilateral Meniere's disease. Oh what a beast he is! The room starts spinning around like crazy. Ugh! Va**um is my one and only true friend when Mr. Meniere's arrives. A few poor ambulance drivers have dealt with me and Mr. Meniere's. Next was the full blow Neuropathy. Well now that was a treat! Can't walk or move. By the time I got to the right doctor I had had three rounds of steroids just to move. Well, that was just the beginning of a horrible and wild adventure in what I call my own personal hell. I have learned to never say it can't get worse because it can…..
On June 22, 2014 my life took a turn for the worse. I was told I was in complete kidney failure, with a GFR of 10. This meant that only 10% of my kidneys were actually working, which is not enough to keep me alive. I had an amazing doctor. He sat and cried with me on the bed. I was crying not because I had complete failure but because I had to stay in the hospital. I am a divorced Mom that does not do well at a hospital when the kids are at home. Parenting from a bed does not work. Well, my support team came to my rescue and helped me as they could. I was going crazy, had several (dialysis) treatments and all I could do was wait for blood tests, and food. I mean come on how much tv can one person watch? Bored was an understatement. I received my first chest catheter during this hospital stay. That was interesting - I mean a catheter that goes into your heart for dialysis ‘til your fistula gets developed enough. It was one happy day when I got this thing out only about 6 months into treatment.
Well, I am now waiting and learning to sit quietly in my dialysis chair, hoping I do not get sick. The only way for me to get off of dialysis is to have a kidney transplant. As for family members being possible donors, that is not a possibility. Both of my kids are already showing signs of the disease that starts as an Auto-immune Disease. Next, my half- sisters are dead already from this disease. They died at 45 and 50. I am walking on borrowed time and really would like to get a transplant before it is too late.
I am in for a long wait if I don't find a live match. I am in need of a Blood type “O” kidney. An “O” donor can give to someone with Blood type “A” or “B”, but someone with Blood type “O”can only receive an “O”. I stated above I am on borrowed time. Please, if you ever thought about donating to someone please give it a shot. It really won't take you out of your life much, just a few short days in the hospital. I know God has a purpose for me and he is not done. I believe in healing, whether it comes by the hands of others or God. I want to be whole and well again so I can help and do for others what other have done for me. Please consider testing to see if you can be a donor. Call IU Tranplant coordinator for information about testing. (1-317-944-4370).
