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Countdown to Kidneys Being Included.......

Friday, March 5, 2010


I don't have a lot of memory about these treatments. I do not remember exactly how long I had been in the hospital when they started the treatments and I had so many I do not know the total number of actual treatments but they were horrible. It was such a disgusting procedure to me. The nurse would come in the room with this huge machine and then boxes full of cold donated plasma....other peoples plasma!!! Now for someone with a long history of germaphobia, other peoples body fluids was not something I was happy about. But like I said earlier, I would do whatever it took to get home to Madeline. So, when the procedure begins, I remember you get a dose of benadryl and for some strange reason it made me feel high. These treatments would take 2-3 hours to complete. Most times I would sleep through them. The bags of plasma had a orangy-green tint to them. They would give me something like 16 units. I don't remember exactly.

I remember on one occasion, right after the treatment was over I had to have a bowel movement, which I had not had in DAYS. However, I did not know that there was a rule that you cannot stand up for 30 minutes after a treatment. Your blood pressure can bottom out and basically you can lose all control over bodily functions. Well, that is exactly what happened. It took Chris, Susie and the pheresis nurse all to get me to bathroom and before we made it, I pooped all over myself. It was horrific. I wanted to die right then and there. I mean for God's sake I was swollen like a toad frog, looked like a monster, tubes coming out all over my body, vomiting, endless migraines and now I was crapping all over myself. That was really a low point. There would be more low points to come, but this was definitely one of them. My gracious husband and aunt cleaned me up. I was so embarrassed but I wasn't constipated anymore....for awhile at least.

One time the pheresis nurse had on some perfume. I could smell it the minute she entered the room. Strong smells have always triggered migraines in me and this smell did just that. I really felt like my head was going to crack open and explode. The doctors were giving me Demerol, morphine, dilaudid, phenergran, ativan and really I don't know what else and nothing was working. It was the worst pounding ever. Then I began puking. There were times I can remember Susie or my mom holding my hair back and I would puke in a bucket beside the bed. After that, a big sign on my door read, NO SMELLS!

This is what my days consisted of. Treatments, vomit, pounding headaches, medicine, doctors, nurses, blood draws, finger pricks, test after test after test to figure out what was going on with the kidneys. My creatinine was steadily rising and so was my blood pressure and I don't know who told me that dialysis might be in my future. I cannot remember anything about that moment.

And for the record, I no longer have an aversion to other peoples bodily fluids. I know that sounds weird, but I have had so many blood transfusions and plasma exchanges, I have all kinds of blood running through me. And to those who donated all of that blood and plasma, thank you! I am forever grateful for your fluids!!!

1 comment:

  1. Jill,

    I just wanted you to know that I have read your entries regarding your medical journey since your diagnosis with HUS. I am so glad that you were able to get such wonderful care at Barnes. About a year ago, I received an email from Peggy Kenner about what they thought was TTP. I called your Mom and she told me all that you had been through. You've been on my mind and in my prayers since. Shame on the bad doctors and nurses...I hope I have never treated anyone like that!