I haven't written just to write and express myself in so long now. The urge came when my husband was sleeping during his dialysis treatment and the social worker entered the room with a folder of information about kidney transplant. The wave of emotion that came on was indescribable. It was already an emotional day. We were tired. I was grumpy. We were hungry. We were at a previous eye appointment for nearly three hours only to get another referral. And now we were here - on dialysis.
Dialysis is not brand new to us. My husband started it previously at a different clinic. He didn't like the way the doctor spoke to him nor the way the nurses treated their patients so he got a second opinion with a nephrologist unaffiliated with the dialysis clinic. He was strong enough at that time to go off dialysis and remain off dialysis for nearly two years. But, like many CKD (Chronic Kidney Disease) patients, he fell ill and his kidneys took a turn for the worse. This last time for good.
This time we heard about home hemo-dialysis and, fortunately, are good candidates. So we have spent the last few weeks training to bring dialysis to the comfort of home. We make a good team when it comes to setting things up. He cares for his insertion site and I prime the machine. Together we make all the conections and wait out the time together in peace.
The hardest part is waiting for him to feel better. We keep hearing the promise that he will have more energy, better sleep, less itchiness. But so far (and I know it has only been one month) we are still waiting. He stays up half the night because his skin is crawling and when he finally falls into a deep slumber the sun is coming up then he can barely stay awake.
Naturally, I've taken on more responsibilities around the home like mowing the lawn and running additional errands. I need to finish clearing out a space in our living room for all the medical equipment. In a way that will be nice because it is forcing me to also finish making the spare room my office at the same time. I will have to stop making excuses as to why I'm not being productive during the day. There's no television in the new office. And maybe I can take on a few new clients once things settle back down. I would really like that.
Doing the dialysis at home has a lot more advantages for us as well. Instead of being in a clinic for half the day four to five times a week, he can relax at home and I can get some things done around the house while he dializes. I'm amashed to say I really need to clean the house! Also, we have been told we can travel with the home unit, which is great. We don't have plans for the near future, but that's nice to know. He can also do shorter sessions more days a week. Not sure yet if that's an advantge, but we will see. I can also set it up to be ready for him to start as soon as we get up in the morning. So if he is still sleepy, he can continue to nap and I'll monitor all his vitals. Which is what we've been doing in the clinic.
We are already familiar with the CKD diet, since we've doing it the last few years. There may of course be some adjustments made due to dialysis, but we'll make them as we go. The next stage is going to be tested for transplant. And then we wait.
Is anyone else going through something similar? I would love to hear your story! Thanks
No comments:
Post a Comment