Monday, December 14, 2009

#1 Introduction and brief backstory

So hi!! I am not a blogger. I don't know how this is going to go. Maybe smoothly, maybe shaky, maybe non-existant. The reason I started this blog is because I could not find any story about what I am going through and my experience in watching my mom go through renal kidney failure, dialysis and everything else that goes along with it. I have looked at page after page after page of stuff related to Kidney transplants and donation options. If you've run across this blog and are just finding out someone you love is in kidney failure, check out these sites first

National Kidney Foundation
Living Donors Online



There are a lot of links on the page that describe some of the things i mention, so please click the highlighted words.

So a quick back story to let you know where we are. My mom is in renal kidney failure. She goes to Dialysis three times a week. She usually feels pretty good, comparitively, the day after dialysis. She gets up and moves around. She doesn't sleep well thru the night. She is plagued with a constant itch all over her body. A lot of dialysis patients itch. She scratches until she bleeds sometimes. She is suffering. It is quite hard to watch. This is the second time she has had renal kidney failure. She had a kidney transplant 25 uears ago. She also has skin cancer. She has had this over 25 years....WEAR SUNSCREEN!!!!!!!!!!!!! I am 30, and for long as I remember, my mom has had to go to the dermatologist (who happened to be my uncle) and get her skin cancers frozen off. Then slowly they got worse and had to start receiving MOHS surgeries. She usually has about 3 surgeries every two weeks. To put into perspective how long she's been dealing with this, the doctor said the other day after her surgery, there isn't any original skin left of her body to graft from. As soon as her previous surgeries heal, it's time for more. Throughout her life, she has had a couple other medical issues that she has overcome. She has had colon cancer, a slipped disc, and a parasidic twin.

I was between the ages of 5 and 6 the last time she went thru this, so I do not really remember. I do remember laying with her in bed and her arm sounded like the ocean. I since have learned this time around, it is because of a Fistula that is in her arm to hook her up to the dialysis machine. When her kidney function reduced to about 6% functionality it was time to start the transplant process. My mom has done her whole work up and is currently on the Kidney Transplant List. Which means basically at any moment we could get a call at any moment telling her to go to the hospital right away cause there is a kidney available for her. This also means, someone else has lost their life but was an organ donor. This kind of transplant is called a Cadaver Transplant. The doctors have said it is a higher success rate with a living kidney donor.

I went in and got my blood drawn to see if I was a compatible match with my mom. They said the results would be in after 3 weeks. 5 weeks later I received a call while I was getting my oil changed. The lady on the phone told me, well you and your mom were a perfect match. ***pause**** but sadly your tissue types just rejected each other. We can not let you donate to your mom, even if we try again and it works. UGGHHH the pause. Why was she cheery and pause after saying we were perfect match? Anyways, ok it was saddening. I didnt want to tell my mom. I wanted to be a match sooooo bad. I thought for sure it would be me, regardless of the fact I am not blood related. Regardless, just because I wasn't able to directly donate to her, I was/am determined to help her in any way I can. The kidney coordinator told me about the Paired Kidney Consortium. Kidneys have seemed to be in the news a lot lately. People Magazine had a story about a 6 way transplant at John Hopkins Then there was a 16 way transplant. Then a 26 way transplant. I just read about a 32 person one a few days ago. So this is what I am persuing currently. So far I have seen a social worker who asked me basic questions about my health history and gave me a jar to collect my urine in. Easy breezy.

Anyways thats it for now. More to come.

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