As part of the dialysis training that we were doing in the center, I also attempted a couple of manual exchanges at home before I received my machine. It had been 4 days since I received a full session of dialysis, and I was starting to feel pretty crappy. I first weigh the bag using a simple scale that you see in the photo below, and then fill my belly with ~1500mL of dialysis fluid from that bag. Once I'm full, I disconnect from it and am free to do whatever. The time that the fluid is in my belly is called the "dwell" time. The longer the dwell, the more water that is removed. I need to keep it in at least 90 minutes in order to ensure that my blood is thoroughly cleaned, but anything over that can result in more fluid being pulled off (essentially doing the same job that my diuretics used to do).
Once my dwell time is over, I connect to a discharge bag and empty out the solution. This is a pain free process until the end when the fluid gets really low. I've found that because I'm a thinner person, leaving a little extra fluid in to cushion the catheter feels much better. The picture below shows what the fluid looks like in the discharge bag. Once I've drained out all of the fluid that I can tolerate, I weigh the discharge bag on the scale to see how much I drained out. If I drained out more than I put in, then that's called ultra-filtration. Sometimes I ultra-filtrate, and sometimes I don't. If I leave the solution in for a really extended period of time, there's a chance that my body could re-absorb some of the fluid. It's not dangerous, just not what we want.
I could do dialysis like this the entire time if I wanted to. It would be a 24-hour cycle of filling, dwelling and draining (which I would do 4 times during the day) which is called CAPD (continuous ambulatory peritoneal dialysis). It's a great option to have if I'm traveling, or if we lose power for some reason, but otherwise I don't plan on dialyzing this way. My plan is to use the cycler.
I tried to get Izzy involved in the process as much as possible so it was less scary, but I think I may need kid masks in order to keep her in the room with me. These kept falling off of her :)
Here's a picture of part of the cycler. You can't see it very well, but it says "Connect Yourself" which means its ready for me to connect my catheter to the machine (after all of the setup activities). This type of dialysis is called CCPD (continuous cycler-assisted peritoneal dialysis). It's basically the same cycle of filling, dwelling and draining, but done while I'm sleeping, and in a more condensed timeframe. I do 4 of these cycles in 9.5 hours every night.
I will say that I took to this machine very well. Joacim and I trained on everything in 4 days, which is rare, but we really wanted to push it in order for me to be able to do it at home by Thanksgiving. My first night at home was the night before Thanksgiving, and it was thankfully uneventful.
This is what the machine shows when I wake up in the morning (usually, that is....I've woken up before it's done a few times). You can see that it's a very simple machine...not much you can do to screw it up. I'm sure a lot of people are surprised at how big and bulky it is (25 lbs), and I'm even sure that they could make this thing fit in my hand and do the same thorough cleaning, but the industry doesn't have a lot of incentive to improve if it doesn't mean more money, so looks like we're stuck with this :)
I think this is kind of a random post about dialysis, and I'm sorry. I started this post a week ago and just never had a chance to finish it. Meanwhile, life has happened and my brain is a bit mushy today. my plan is to do a video in the near future showing what the setup looks like. So many people have asked questions so I think it would be a great idea. I'll get around to it eventually.
In addition to doing this dialysis at home, I have to go to the PD clinic 2 times a month. The first time is to draw labs, and then get 2 EPO shots and a dose of iron (seen below). The iron is a really thick substance, and it takes 5 minutes to push in. As soon as it starts, I get this very strange taste in my mouth...almost like burned brown sugar. The 2 EPO shots work with the iron in order to build up my red blood cells, as production of those is handled by the kidneys.
The second appointment of the month (2 weeks later) allows me to meet with my nephrologist, nutritionist, and social worker if needed, in order to review anything .
It may sound like a lot, and it is, but I feel incredibly lucky that I can do this at home. I honestly couldn't work if I had to do in-center hemo the whole time, and I would feel awful most of the time, I'm sure. Just because I'm thankful doesn't mean I won't complain every now and then :)