Moved "Across the Street"

On Saturday I had my first treatment over at the satellite unit rather than in the hospital. I had been warned that I would probably eventually be moved "across the street." Even on my first day the nurses mentioned that I would probably be sent over there eventually and that I would most likely like it there. The satellite dialysis unit is, from my understanding, where people who are less needy go for their treatments. I was told that I would be sent over there once my treatments were going well and if I could hold my own site afterward and if I was fairly independent. Alternatively, I would be sent over if they needed the beds at the hospital and I was the best candidate to be moved over, they would send me. Or, I could end up staying at the hospital for a while even if I was ready to go to the satellite unit if there weren't any beds available across the street. It was funny. It almost reminded me of law. Whenever you ask a question in a law class, 90% of the time the answer is, "It depends!" When I asked when I would move to the satellite unit, the answer felt a lot like, "It depends!" Do you ever feel like there are themes in your life? I do.

The nurses from my first treatment were right. I did like being at the satellite unit for my dialysis treatment. First, I can park my car right there and not have to walk a ways to my car so late at night when I am done. Second, the nurses didn't seem so harried as they do at the hospital. Not that the nurses at the hospital are flustered or anything like that. It is just a calmer atmosphere. I think that must have to do with the level of care that the patients need at the hospital compared to at the satellite unit. The patients are much higher needs at the hospital.

I don't know if I will be staying at the satellite unit, though. The message I got was that I was to go there for a week and then, "We'll see." Since I didn't actually talk with anyone about why I was going to the satellite unit, I don't know if it is because I was ready to be there, or if they needed the bed at the hospital. It felt good though to be welcomed by the staff at the satellite unit and told that I really should stay with them. That wouldn't bother me at all! But we'll see how my next two treatments go.

Balancing or Juggling? Regardless, It’s a Full Plate

It is not uncommon for people to say to me, “I don’t know how you do it all!” And my reply is usually, “The same way everyone else does. Everyone’s plate is full, I just have different stuff on my plate.” And it is a very full plate.

Trying to balance home life, work life, school life and church life has become a little trickier since adding dialysis to the mix. I always felt like I had a lot of balls in the air – juggling them to keep them up. I work part-time and go to school part-time, but try to keep enough hours at work to maintain my health benefits and take 18 credit hours of school to keep my student loans. I would try to be home for supper with my family and read every night to my kids so that I have at least that much “family” time. And liturgy Sunday morning was a must.

Last semester I realized that I was missing too many Sundays – the result being that I was getting grouchier and didn’t really like what I was seeing in myself. So for my second semester I took some steps to ensure that I would be able to keep all those balls in the air and still maintain my sanity. I arranged that I would really only work three days a week and not go to work on the other two days, even if I didn’t end up having class in the afternoon. That way I would have time to get my school work done before Sunday and not skip church to finish it.

It was a good thing I had decided to do that, as dialysis began in January, filling that empty spot I had created for myself. However, it takes up more space than that, and I had to let go of another ball – CLASSIC. CLASSIC is Community Legal Assistant Services for Saskatoon Inner City. I was volunteering with LAC (Legal Advice Clinic). It wasn’t a huge time commitment – about one Tuesday or Thursday evening a month. But when I had to pick my dialysis days, I couldn’t pick Monday, Wednesday, Friday evenings because I have a Monday night class this semester. So there went my legal volunteering. It was hard to give up. I know there are other students who can take those shifts I was going to do, but it was a ball I was juggling that I really liked.

Oh, don’t get me wrong. I like all the balls I have that I juggle. In fact, there are more balls that I have put to the side that I hope to pick up and add to the juggling act again someday. But there are some balls that I am juggling that I like less than others. In fact, this dialysis ball is becoming a pain. Today’s treatment will complete six weeks’ of treatments so far. It has already been six weeks. Or maybe it is only six weeks. And I am tired of this ball already. I can’t imagine how some people have been doing this for years.

On a positive side, I have a lot more energy. I am not feeling like I need a nap every day anymore. I think I am thinking more clearly – despite the mistakes I still make! But there is a down side that I still need to learn how to cope with. Dialysis sucks up my time. It takes six hours out of my day three days a week – 18 hours a week consumed with dialysis. And of that 18 hours I recover about four with family time (my husband brings my kids while I am hooked up so I can read a chapter to them every night still), and maybe five or six (if I am really focused) on school work. So that means I now have another 10 hours a week consumed with something that is virtually useless. Okay, not useless in the sense that it is keeping me alive. But useless as in I cannot see the productivity in it.

Dialysis has also changed things like what I decide to wear in the morning. On dialysis days I have to wear something short-sleeved. So I think of what I need to wear (am I working or going to school?) and then how I am going to stay warm while doing dialysis (what sweater will work to do the dialysis and stay on me enough to keep me relatively covered?). Have I mentioned already that by the end of a treatment I am usually freezing cold? There are a number of reasons for that. First, they cool my blood before they give it back to me. Just by a degree (Celsius), but it is enough to cool a person off. And they keep the room cooler. I have noticed that most of the nurses also have sweaters that they keep handy so that if they are sitting, they can stay warm (not that the sit very often). A doctor also mentioned that she noticed that her patients with kidney disease tend to be colder in general, anyway.

On a side note – my husband and I have thermostat wars. He likes it cooler and I like it warmer. I joke that it will be funny the day the roles are reversed in our house when we are both old-folks. Then I’ll complain about being too hot and he’ll complain about being too cold!

Now I realize that complaining about changing the way I pick my clothes is really trivial. But it also means that on non-dialysis days I feel like I have to pick the clothes that are long-sleeved or that wouldn’t be a good choice on dialysis days, just so that I can wear them. I never realized how much I like the freedom to just pick what I want to wear because I want to wear it, not because I feel obligated to wear it. I guess I am a little bit of a spoiled brat!

Well, seeing as dialysis is a ball I am going to have to keep around for a while (until I get a kidney transplant, anyway), I am going to have to learn to like it. Or at least, not complain about it. I wonder if it will get easier to juggle as time goes on. I hope so.

After Treatment #10

I am a little discouraged. I was so excited because I was feeling so much better and thought now I am over the hill with this dialysis thing. But my last night’s treatment left me feeling really yucky today. I don’t know really how to describe it. Some ways I tried saying how I feel:

Not really myself.
Blah.
Gross.
A little dizzy, but not.
If I were made out of Styrofoam, there would be a steel ball for my head.

Today was a work day, but I called in sick this morning. I hoped getting some more sleep would make the yucky feeling go away. It didn’t really. I finally just decided to get up and go in to work despite how I was feeling. I made it through the day. But as soon as I am done this post, I am heading to bed again.

So why the change? I suspect it is a couple of things. The first is that I had really good needling last night (Yay!), and they ran the machine fairly quickly, so almost twice as much blood was cleaned as ever before. The goal is to clean as many litres of blood as I weigh. We did that and a little bit more. Up until the last treatment, the most that was cleaned was just over half as many litres of blood as my weight.

The second reason is because I received my loading dose of iron last night. It was the first time I have received it intravenously. Up until last night I took iron every night before bed. It was part of my routine. I had to was supposed to not eat three hours before taking my iron. After I took it I would sit up for half an hour and then go to sleep (I usually watched something on TV for that time). If I was up too long after taking my iron, I would feel gross. Apparently it can be hard on your stomach. Anyway, it didn’t really matter to me because the way I cope with not feeling well is sleeping. (Remember, I’m an ostrich. Avoidance can be a good thing!) Well, the loading dose of iron was an amount much larger than I was taking orally. Now I will only be getting iron once a month instead of having to take it every day. I sure hope I don’t feel like this after every treatment with iron. I guess we’ll see next month.

So, needless to say, I haven’t felt very productive today.

Some random thoughts:

I’ve been itchy. It’s driving me crazy.

My daughter and I are working on her homemade valentine’s cards for this year. I’m excited to see the end result again.

I finally have a decent blood pressure machine for at home and have been taking my blood pressure readings. They are at good levels, and I am not on any blood pressure meds at the moment.

I like smiling. I don’t like it when I don’t feel well enough to smile.

Almost every treatment (I think every treatment, but I can’t remember for sure), someone comments on the blanket I have. It is an afghan that my mom made. I love it, and miss her tons.

Bruce holding up my mom's afghan. The colours are much nicer than they look in this picture. And he is wearing a bright orange shirt, which you can kind of see through the afghan! (hee hee)

Three More Treatments - Three Weeks Done

Hooray! I am beginning to feel like I have more energy. I am feeling more chipper and like I can accomplish so much more again! What has been exciting to hear is a couple of friends of mine have said they can see that I am starting to look better. And other than feeling like a pin cushion, dialysis is pretty good.

Not that all the kinks have been ironed out yet. My last treatment was the first one with two needles. The first eight treatments were with just one needle. Because of the two blows, they wanted to make sure my arm had a chance to heal a little before giving it the double-poke. Even with the double poke, there was a small issue. One of the needles was near where a blow was, so it was a little tender. Actually, it hurt through the whole treatment. The nurses were nice and put some ice in a glove and taped it to my arm, which made the pain bearable. But when the needle was pulled out, I am afraid to say that I yelled (and cried). It hurt like the Dickens!

(Speaking of Dickens – as an aside, I really liked reading the unabridged version of David Copperfield. I should get it out and read it again sometime. But Oliver Twist was heartbreaking. I am not sure I can put myself through that one, again.)

The bruises on my arms are looking better, too. The middle part is looking really good. Most of the bruising is just around the outside and, I can bend my arm all the way now, so the swelling has gone down considerably.

One thing I am still working out is how to get my studying done. You wouldn’t believe how hard it is to try to do one-handed. And sometimes I am distracted and have a hard time concentrating. There are beeps going off and people talking. And I can’t get up and move around for a break every half hour or so. My bum hurts from sitting for so long (about 4 and a half hours). Typing is painfully slow. So I can do the readings, but then have to go back to do my briefs. I am afraid to say that I haven’t gone back to do the briefing, yet. I have a lot of catching up to do over the February break!

I’ll be interested to hear what my blood test results say. I don’t know how often they will be doing blood tests. I used to have to go once a month (although I really only managed to make it once every two months – oops!). I’ll have to remember to ask the nurses next time I have a treatment how often they will be doing my blood work.