Thursday, February 21, 2013

Lows and Highs

Well, the last time I updated the blog was on February 5th, the day I had the dialysis catheter placed. It’s been a little over two weeks since then, and a lot has happened. The rest of that week following the surgery, I continued to get sick. I wasn’t sure if it was related to the surgery and anesthesia or if it was just that my body finally remembered that a pretty crucial part was not functioning properly. In any case, I called my doctor on Friday and he said that on Monday when I was planning to go to the dialysis center to have my bandage changed, he wanted them to go ahead and start me on low-volume dialysis. Saturday and Sunday I ended up feeling great and thought I was “better”, but on Monday morning I was getting sick again.

My sweet friend Kelly ended up taking off work on Monday to accompany me to the dialysis center and Amy took me on Tuesday – I was definitely thankful to have someone there since Chase was still in Nica. I think if I’d gone alone, I would’ve cried the whole time, but instead I had someone to laugh with about the video on how to clean the catheter exit site or to be horrified with at the multiple pictures of infected exit sites. Anyway, Chase came home late Tuesday night and he came with me on Wednesday to the center. That afternoon, we went home with several boxes of supplies and the knowledge of how to do “manual” dialysis at home. So from Thursday to Monday, Chase played PD nurse. In the morning, he would put in the dialysate (the dialysis solution, which is essentially sugar water) through my port. I would disconnect and go about my business for three hours while the fluid dwelled in my abdomen, cleaning out the toxins from my blood. Then I would reconnect, drain that fluid, and refill with more fluid. We did this three times a day. It was quite time consuming, (though I’m thankful I didn’t have to sit still for the full 9 hours!) and we were definitely looking forward to getting our machine so that the dialysis could be done automatically while I was sleeping.


This past Tuesday, we went back to the dialysis center and learned how to use the machine. It’s slightly more complicated in some ways, but simpler in others. There is a fairly tedious set up process, but once you get it all set up and go to bed, it’s supposed to work like magic – filling, dwelling, and draining automatically all throughout the night. Our first night, there were several kinks. We were missing a connector piece we needed to lengthen the tubing so I could reach the restroom in the night. We fixed the issue by rearranging some furniture in our room (and making a complete mess in the process). I also became overwhelmed with anxiety, because the filling and draining process has ranged from slight discomfort to quite painful so far. Being ready for that during the day is one thing, but being woken up several times in the night to sudden pain is quite another. It was a restless night of sleep for both Chase and I and then at about 5am, the machine starts beeping loudly at us. There wasn’t enough fluid for it to fill me the last time, so I pulled out the thick manual we were given trying to figure out how to appease the machine. We didn’t really know what to do, so we ended up trying to cancel the whole thing out. Basically, I consider the first night a definite fail.

Last night, we didn’t have any more missing pieces or error messages, but the pain seemed even worse. I’ve read and heard that it’s somewhat normal in the beginning since your body isn’t used to having all of this nonsense going on, but it should get better with time. It’s been about 10 days since the first treatment and I don’t see any improvement, so I think I’m going to call the PD nurse today to see if she can help. At this point, I’d prefer to feel sick than to spend each night being woken up every hour by some pretty severe pain that lasts for almost 30 minutes each time.

So I would really appreciate prayer that we can figure out what is going on! It could be because of the acidity of the dialysate or possibly wrong placement of the catheter. I’ve heard such great things about the convenience and ease of PD, but so far, it has been way more painful than regular kidney failure symptoms.

Enough about the lows…onto the highs! About a week ago, I received a call from the transplant hospital that they have chosen a potential kidney donor! Since then I have been e-mailing with her and last night, Chase and I had dinner with her and her husband. We are absolutely blown away by God’s goodness in providing such an amazing (potential) donor. Though I don’t understand it, she is so excited about the possibility of helping in this way and has gone above and beyond to encourage us and assure us that she has no reservations about having the surgery. The next step is to do a cross-match of my blood with her blood to make sure they are compatible and then they will move forward with her testing. If all goes well, we can schedule a surgery date. I can’t wait to tell you all the full story and all the G0d-glorifying details if and when she ends up being “the one”. Until then, I am encouraged by the words she ended one of her e-mails with. “I truly believe that God will keep His promises to you. He will deliver us both safely. Just you wait and see!”

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