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Wednesday, January 26, 2011

Ups and Downs

Lots of things are going on with me right now. As I type this I am in bed sick with lots of vomiting and low blood pressure. Yesterday my BP was 61/50. It hasn't been that low in a long time. Today it is up to 90/69. Still low but better. The vomiting is worse today than yesterday. Good news is the dialysis clinic thinks they know why I am puking so much more here lately. Bad news is I have to increase my dialysis time to feel better. Which means I will be on the machine at night longer than my usual 8 hours. But I have been lucky to have only been on it for 8 hours a night. Many people I know dialyzes much longer than that.

More "down" news is I am not too thrilled about this new Frecenius machine. I had gotten really attached to the Baxter machine and hated changing. I knew changing machines would be an issue for my temperamental blood disease. I think this new machine is part of the reason I am puking so much more. It actually has a pump that pulls the fluid and my body feels like it is pulling too much. But I will adjust to it. It's just going to take time. I am already on my 2nd machine in 48 hours of being on a Frecenius cycler. The first one was so loud. Chris slept on the couch the first night it was so loud. But within 3 hours of calling the company, a new machine was at my door. That's customer service!!! Who knew you could get a dialysis machine delivered to your door in about the same amount of time as a pizza!

So enough with the down news. Good news is I have had labs drawn and sent to the Blood Center of Wisconsin to start tissue typing and testing for potential donor capability. I am praying I hear I have a match soon! So far, I have one person who has gone through the process to be a donor and she is an angel and a blessing. I have a gut feeling she will be a match. I know God is watching out for me and clearing a path to make this transplant happen.

I have also had many letters written to help me get the drug Soliris that I desperately need for this transplant to be a success. So I have done everything possible on my end to facilitate this transplant. It is now in the hands of others to make a decision. I feel a peace about the whole situation. And I will keep the blog posted as soon as I start hearing news. Please pray that my potential donor is a match and that I get Soliris approved.
xoxo
Jill

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