2/17/09 - Dialysis Issues Strike Again

After two rather uneventful days, today has broken pattern and not been the easiest for Alyssa. Dialysis days are never easy, but we were hoping that her recent good blood pressure readings meant that this might change. I guess that were still not at that point yet.

For whatever reasons, Alyssa awoke this morning with nausea and a general feeling of malaise. Her BP was up slightly, but not too high for concern. This would be her first dialysis session at the Center on East Ridge Road, so she had to be there an hour early for paperwork followed by her normal three hour session. As the treatment went on, her BP continued to rise, with a final reading of 166/119...levels that we hadn't seen for several days and had hoped were behind us. What is so difficult for us is not knowing if the BP rise due to the treatment itself or are her meds being drawn out by the dialysis machine during the treatment. There doesn't appear to be any agreement within the medical profession as to which medicines are impacted by dialysis. It's very frustrating not having this information available, especially when you think of the millions of individuals that need dialysis, this should be basic info!

It's now 3:45 PM and she has been sleeping upstairs for about an hour now - her BP is back down to 126/88 and we're all taking a deep breath again. Alyssa can't help but worry about seizures every time that her BP rises and/or when she feels "shaky." She is on such a roller coaster ride.

As noted Sunday, Alyssa has found a fellow HUS patient in Arizona. They are communicating regularly through AIM and are both excited to have found someone that understands what they are going through. They both fell ill in January. Her new friend is 28, and married with a three year old daughter. . Her mother, who is a nurse, has moved in with her to help out. We ask that you keep her in your thoughts and prayers also.

It's rather quiet around the house now as the "brothers" are all off skiing at Holiday Valley for a few days. This has been an annual trek for the Deffenbaugh's, so we're very happy that Mark could continue the tradition by taking his younger brothers down to Ellicotville. We all plan to go next year!

Just to get an idea of how life has changed for Alyssa - tomorrow morning when you get up, note the time and think of what it would be like to be in a chair attached to a machine for the next three hours. That's just part of her daily regiment; but we have yet to hear her complain about it. Mom & Dad want to know why, but not Alyssa. She has made us both very proud.
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