Thursday, April 24, 2014

Dialysis at Home

We are all set up at home now with the cycler.  This is the machine that does the peritoneal dialysis overnight for Daddy.  These first two weeks are the toughest part.  He has to lay totally flat on his back while the machine is working which is 10 hours each night.  Since he just had surgery a week ago, they want to put the most minimal amount of pressure on the exit site, the place where the catheter exits the body.  This means flat on his back.  

The first week post surgery was really hard.  He slept most of the week and it got worse before it got better.  He did not have dialysis that first week except for two hours while we trained on the machine at Davita.  So we can only imagine how built up the toxins were getting.  He was also taking pain meds for the surgery pain and those make him feel cruddy.  His body was healing from surgery.  AND it has just been a rough time!  So no wonder he slept for a week.  I don't know anyone else that has more of a right to just rest and recuperate.  

So many things have just fallen into place even though it was such a hard week.  My dad, Gigi decided at the last minute to come and see us for Easter since we couldn't travel yet again for a holiday.  A sweet friend told us she was bringing a meal which happened to be the day after our unexpected surgery.  A mom of one of Peanut's good school buddies stepped up and is helping us make sure Peanut gets to school just fine on Monday, Wednesday, and Fridays of these two weeks since I have to leave before she goes to school and Daddy is literally tied to the couch.  There are more things but these are the ones on the top of my head right now.  

Each night I set the machine up for Daddy and hook him up.  He can do that part but it makes me feel like I'm actually a part of this all.  There is talk that I'm going to have to start giving him a shot too every two weeks.  I can't believe all of the things I am doing these days.  A few years ago I would have laughed you off if you had told me what my daily routine would become.  

Daddy is doing so much better each day this week.  He has lost quite a bit of weight so we're hoping he can gain some of that back as his appetite increases.  We need to stay on top of his protein intake!

We did find out that his GFR is currently 10.  It was 13 last fall so he has gone down but it wasn't as bad as we thought it might be so that was encouraging.  Dialysis is holding him pretty steady.

On Monday we also discovered that two people have gone through the testing process since February (we had only known of one) and that both could no longer be the donor, one due to medical concerns, not sure why for the other.  This was a huge blow to us but we were encouraged to know that the testing process can be so quick.  On Tuesday the transplant center was already in touch with and proceeding with another one of the matches on the list.  We only know of one other match if this one doesn't work out.  

Many have asked how the girls are doing and from what we can tell, they are doing great.  They really just roll along with everything and have gotten better at changes.  We try to keep them in the loop as much as we feel we should.  We don't want them to be scared of the machine, ALL OF THE BOXES of medical supplies, the tubes, the catheter, the masks, and so on.  Both girls talk about being nurses or doctors so who knows how this experience could shape that future for them. 

This should catch you up with the latest new regarding Daddy.  We so appreciate all of the prayers and encouragement we have received from so many of you.  Thank you!

Anyone who is interested in being tested as a possible match should call the IU Transplant Center in Indianapolis, IN. The number is 1-800-382-4370. Just tell them you are interested in being tested as a living donor for Kevin Flick.

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