dialysis training home hemodialysis organ donation awareness organ transplant awareness sos4000 step by step

First Day of Home Hemodialysis Training / SOS4000 – Step by Step

I didn’t sleep very well last night.

I tossed and turned in my bed for half the night. All I could think of what the day that was ahead of me. It would be my first day of home hemodialysis training.

I had no idea what to expect. I didn’t know if I was going to be thrown in there right away and be expected to start learning how to set the machines up, etc., or if today was simply going to be a day of observing. And as per the nurse I spoke to before agreeing to do home hemo, I was expecting a LONG day, as she told me that home hemo training was from 7:30am-3:30pm.

Much to my delight, when I got to the home hemo training unit, I found out that training wasn’t going to be an all day affair. Yes, the unit is open from 7:30-3:30pm, but it doesn’t mean you STAY there for that long! *phew*.

Today wouldn’t have been a good day to train me on the machine anyways. As per my monthly blood results, my hemogl0bin had dropped to 70 g/l. Since it had gotten so low, while I was on dialysis I received 2 units of blood. I can’t wait for the effects of the blood to kick in. *sigh*, oh how I love the feeling of “not tired”!

My nurse’s name is Rose. She’s very sweet. In the past she had approached me about wanting to do home hemo but I always refused. I was positive that I was getting a kidney soon. Aside from that, I had no interest in seeing a big ugly dialysis machine in my room. Now that transplant talks are on hold, I can’t imagine NOT taking this step. It’s very necessary if I ever hope to finish school.

Rose was very lovely. She set the machine up slowly as I observed. One of the things I like best about Rose is her ability to explain things to me in a way that I understand without ever being condescending about it. She introduced me to 2 different types of needles. There were the needles that I’m used to, which are the ones we used today. There were also needles called button hole needles. They’re not “sharp” like a needle usually is, but it’s in fact kind of dull. You select a spot on your arm where you will put the needle and you pretty much stick with that spot. Kind of makes things easier. The needle I was most interested was a needle that was similar to an IV needle in that you insert it with the needle, then you remove the needle while a plastic tube remains in your arm. When I was shown the choices, I couldn’t imagine any of the needles aside from the IV-style needle being logical. If I’m going to go to sleep, I’d MUCH prefer to have thin plastic in my arm and not sharp needles….but that’s just me. Then again, surprise surprise…the IV-style needle seems to be the most complex!

I learned how to silence a beeping machine. My machine beeped a lot because there was air detected in my lines, and the machine doesn’t like air. The only reason why it was doing that was because I was receiving a blood transfusion.

Perhaps some doctor already told me this and I wasn’t listening, but aside from dialysis stuff, I learned a few things about myself today. Rose told me that while she was reviewing some notes that a transplant nephrologist wrote in my chart, she noticed that one of my blood results showed that I have a thalassemia trait. Thalassemia is the name given to a group of genetic blood disorders. In thalassemia trait (or minor) specifically, there is a lack of beta protein in the hemoglobin. Usually, it’s not great enough to cause problems in the normal functioning of a person’s hemoglobin.


Anyhow, I wonder if a combination of thalassemia trait as well as sickle cell trait are the reason for my never stable hemoglobin?

After dialysis, my father came to pick me up. He was participating in a walk organized by SOS4000 in order to bring awareness to organ donation/signing your donor cards. The 4000 represents the number of Canadians that need an organ transplant. Pretty crazy. Sign those donor cards! I also got the chance to speak with Mayor Miller. Mayor Miller really likes my Pops because he’s so involved with tons of stuff in the community….my Dad is a popular guy!

If you “facebook”, check out the SOS4000 facebook group. George Marcello is the head of the group as well as the CEO of Step by Step. If you click on the group and click on the pictures, you’ll see a picture of me laughing at I speak to the Lieutenant Governor David Onley and his wife! 🙂


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