Kidney Links

I have discovered Pinterest. I have also discovered how Pinterest doesn't work. I wanted a place to bookmark sites under categories so I can find them anytime no matter which computer I am on. However, I cannot pin a site that doesn't have a picture or video - so information-only sites cannot be pinned. Bummer.

Therefore, I thought I would start pinning my info-only kidney sites here and then I can find them all the time.

Low Phosphorus and Low Potassium Diet - http://www.unckidneycenter.org/nutrition_phospot.html


And maybe I'll add a picture so I can at least pin this post.

The dialysis machine that was used when I started dialysis. We are still using these machines, but I have been told we will be getting new ones.

Making Wands

Usually my husband, Bruce, does the schooling of our kids. However, now that I am done my law school finals and have de-stressed (a little) this week I have been helping him with ideas for our daughter. She is very artsy and enjoys making things. We have done baking and sewing but there is just so much of that a person can do before looking for some variety. So yesterday I signed up for Pinterest to pin the instructions for fixing my daughter's doll's hair and look for ideas for her to do.  Bruce pointed out that he had pinned instructions for making wands. We had planned to make them for school today. However, the kids were excited to start them, and we were unsure if we could get the wands finished today because of other plans; therefore, we decided to start working on them last night and finish them today. Once we got started on them, we were having so much fun we also finished them last night. We are all really happy with our wands and want to share them with you.

We started with chopsticks, small beads, hot glue and acrylic paint.I think if we do this again, we should have smaller beads and preferably ones that don't have holes in them. The chopsticks had a plastic wrap at the handle, which I took off before we started. The paint was mixed to make different colours for the wands - we used burnt sienna, black and yellow. Make sure you have a lot of glue sticks. We used quite a bit of glue.

 To begin, we used the glue to make our handles. We used some of the beads to make bumps and give it some texture. We also used just the glue to shape the way the handles look as well as to give the wands a rough stick-like feel to them. It was a learning process to know how long to wait before trying to mold the glue since if you try to mold it too early, it burns you and comes off the wood and sticks to your hand. But if you wait too long it is hard and not moldable.

Bruce used a lot of glue trying to figure out how to make his handle the way he wanted. About one glue stick's worth ended up in the garbage. He wanted to mold the glue to make it smooth. In the end he said he figured out that what he needed to do was put a really thick layer of glue on the stick and let the outer part of it cool until it was hard, then mold the glue on the inside which was still soft. I used the glue to make my wand look like a bumpy stick.

 After we had our glue and beads the way we wanted, we started to paint. However, there were still some modifications made with glue even after the paint was going on. Some of us decided that after our wands were painted, they didn't look quite the way we wanted them to. For example, my daughter wanted to put more glue between her beads because they stuck out quite a bit and still looked like beads. So she filled in some gaps with glue.

And my son didn't like the holes in the beads, so he took the time to (painstakingly) put little dots of glue in each bead hole. Personally I think his patience paid off because I didn't want to put glue in each of the holes of my beads, but I think his wand handle looks much better than mine.

Bruce painted his wand three different colours - one for the handle, one for the "stick", and one for the spikes - which are toothpicks he broke in half and glued onto the wand.

 As we were working on our wands, there were times we would poke them into a piece of styrofoam so that we didn't have to lay them down on the paper. Here you can see our wands in two different stages - mine is the unpainted one, and my daughter has hers painted. I used a risk piece at the end of my wand because it happened to be in with the beads and I thought it would be cool to use it since it was there.

The paint didn't take a long time to dry, but if you start handling the wand too soon after painting, you end up with fingerprints in the paint. And, as you can see, the colour of the beads doesn't matter because once you paint the wand, you can't see any other colour.

Our daughter works quite quickly on crafts (on most anything, actually), and since we had some toothpicks on the table she took the initiative to make a mini wand. It is the perfect size for her dolls - although she tells us that none of her dolls does magic. It may end up as a gift to one of her friends who likes Harry Potter.

These are the finished handles. The picture doesn't show as well the differences in the colours.

From left to right the owners are me, my daughter, my husband, and my son. We all really like our wands and, as you can see, they are each as individual as we are. 

While we had teased our kids that they needed to go find unicorn hairs  and phoenix feathers for the cores of their wands, we are still all a family of muggles with no real magical ability. We can continue being geeky, though. It was a lot of fun making the wands, and my daughter is already planning what she is going to do for her next one.

Homeschooling - we can do school after supper and have fun doing it!

Fast forward one year:

I am doing well on dialysis. I go three times a week. It has become a part of my life, which I am okay with overall, but sometimes it is frustrating because there are many things I have not been able to do or go to because of the time it takes. It is not all bad, though. I was complaining one time about how I have so much less family time because of dialysis, and my son said, “But we have family time Tuesdays and Thursdays!” My husband and kids come on those two days and we often play a game or two. They have become evenings my kids look forward to - so long as they can agree on the game we will play!

We have discovered there are quite a few different games we can play at dialysis. The nurses are really nice and allow me to have an extra table for my schoolwork or for my family. A lot of the people at dialysis watch TV, but I rarely ever do. I am usually on the computer, reading, or playing games with my family. One of the nurses commented that she had never seen a family with as many interesting games as we have. We are kind of geeky that way. Some of the games we currently have in our bag to bring to dialysis: Monopoly Deal, Munchkin, Bohnanza (although we have to get creative with the space), Ablaze!, Vizia, Flux, and Zombie Dice. We have also played Yahtzee, Settlers of Catan (the board barely fits on the table, so we only did it once or twice), Talisman (which we only did once. We had to put 3 tables together for that one, so didn’t do it again), and Savage Worlds (we each had our own little box for our dice and tokens, etc.). I imagine we could also play games like Trouble or Parcheesi, but haven’t tried those ones yet.

I am glad that my family has adjusted so well to the time I have to spend at dialysis. Because it takes so much time, there is the possibility that I will qualify for a disability benefit. Last year I received a form for income tax; however, the doctor marked off that my treatments take less than 14 hours per week. That is not true. I actually calculate on average I am spending about 15 hours per week at the clinic. While I am hooked up to the dialysis machine for 4 hours at a time (12 hours per week), it takes time to get me set up on the machine and then it also takes time after to take me off and stop the bleeding. Some people are lucky and stop bleeding fairly quickly. I am not one of those people. I hold my sites for at least 15 minutes afterward  because my bottom site has a tendency to leak if I don’t.  My understanding is that it is because I have an upper arm A/V Fistula which has more pressure.  This year I talked with the social worker and now have my form showing that my treatments take more the 14 hours per week.

School takes up most of the rest of my time. I am a 2L now. I have managed to pass all my semesters and maintain my passing average. I commented to one of my profs that every semester I wonder how I am going to get everything done, but every semester I manage to get through and pass. I have also been working on my Mary Kay business, so I will leave you with a dialysis picture of my reading Applause - the Mary Kay magazine for consultants.

Two Positives - A Permanent Dialysis Chair & A Law Firm Reception

I have a permanent spot at the satellite unit! As I said in my last post, I had received a message that I would be at the satellite unit for a week and then, "we'll see." So I was there a week, and then received a call that my next appointment would be back at the hospital. It was a last-minute change due to a nursing staffing shortage. That was fine with me. I still ended up being in a chair and was kind of on my own as they put me in an area that had just opened up. (There is construction happening on the floor above the dialysis unit in the hospital, so they periodically have been closing off areas so they can do some renovations.) But then I got another message after my hospital treatment that a permanent spot has opened up for me if I would like it. I would love it! Not that the hospital is a bad place to be, but it is just more convenient to be at the satellite unit.

The only problem I had with it last time is that I lacked internet connection. So as I was sitting in my dialysis chair hooked up to the machine, I had my laptop, my text book, and the TV all in front of me. The nurse looked at me and made a comment about multi-tasking. Yeah. I guess I was. And the thing about having internet connection is that I don't really need it to do my school work, but I do need it. It is my distraction when I am reading. There is only so much focus I can give on these cases for law school at one time before I need some mindless Facebook or Twitter to distract me. Of course, I think I let it distract me too much sometimes. I gotta work on that.

A pleasant distraction last night was a law firm reception. The big firms in the city have these for the law students as a "meet and greet" event. I had a blast at a law firm reception last night! The receptions are usually about schmoozing and learning how to "put yourself out there" and get known to get a job. I already work in a law firm and am fairly certain that I can stay there as long as I want, so I am not really going in hopes of landing a job after law school. But I had decided to go to these firm receptions for a few reasons.

First, it is always good to try to put a face to a name when you are working on a file. I figure the law profession is a fairly small world, and I would like to see and meet as many of my future colleagues as possible. And so that they can put a face to me when they see my name, too.

Also, it doesn't hurt to get another office's perspective. The dynamics of an office are usually fairly particular to that office. I know not all law firms are the same. They have similarities, but the people make the place, right? It is kind of like when I was looking into going to business college - all of the business colleges here in the city would have given me an adequate education in order to get into the workforce, but when I went into the schools, I was able to feel the "vibe" of the place and it helped form my choice of where I would eventually decide to go. I have to admit, the vibe of the office last night was a good one.

The previous receptions I was at had me feeling kind of on edge and a tiny bit uncomfortable. Conversations at the other receptions were a little forced and didn't come naturally. It was not hard for me to politely excuse myself to go home. But last night even as I was leaving, a little of what I am usually like came out. With my coat on I continued talking with one of the articling students there. And the conversation just 'happened.' You know, not where you try to keep it going so you can make a good impression. I just really enjoyed talking with everyone there. I was really glad to have gone.

Now, another thing I did that I didn't at the other receptions, is I just said it like it was whatever the conversation was about. I provided full disclosure on more than I had at the other receptions. I talked about family and religion and dialysis as well as law school. And I think the people who talked with me enjoyed the conversation as well. Either that, or they are really polite and didn't let on that they would rather that I go home now, please. My ego is going to believe they liked me.

I was reminded last night that I really love my life. I am happy to be where I am and feel very fortunate to be able to do what I do with the people in my life to do it with.

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.

Two Weeks Later

It has been 2 weeks since I started dialysis so I thought I would share some thoughts about the experience.

“OUCH!”
Over the last two weeks I feel as though I have done nothing but complain about how much my arm hurts. But my arm has changed over the last two weeks. Some of the pictures are a little blurry, but here is my arm over time:

Jan 17

I had my surgery for my fistula last April, and this is what my arm looks like after that has healed and before anyone started poking it. At the time I thought it looked a little big, especially where the fistula is. But it’s not easily seen in the picture. In real life, if you look at it closely, you can see my pulse.

Jan 20

After my 2nd treatment the fistula blew and my arm swelled a little. This is the day after. The blood had leaked into the arm, but you can’t really see it yet. It had been iced all night. While it was painful, it didn’t look really bad, yet.

Jan 21

some of the bruising is starting to show.

Jan 24

now the bruising is showing up and looks as painful as it feels.

Jan 31

Six treatments later and three days after my fistula blew for the second time. It blew again on my last treatment which was Saturday. Saturday’s treatment was not great as far as I was concerned because my fistula blew and I was in pain during the four hours I was hooked up to the machine. (After icing my arm, a nurse needled me lower down and so I still had my treatment). Therefore, I didn’t get my homework done that I needed to do. You can see where the bandaid was on my arm. Interesting.


“I keep almost passing out, but nobody is sure why.”
At the end of my first treatment, the nurse asked if I would hold my needle site. While I was holding it, I felt light headed like I was going to pass out. I thought maybe it was because I didn’t get all my blood back, and I couldn’t really handle holding my site because I had images of doing it wrong and bleeding to death. Yes, I know. A little overdramatic. My imagination runs away on its own sometimes.

Then there was a treatment where I was holding my own site (I realize I am NOT going to bleed to death), but then I felt really weak and like I was going to pass out again. I tried to call for my nurse, but even though it felt as though I was yelling, my nurse said I was calling out so quietly, she barely heard me.

Finally, on Saturday while I was still hooked up, but near the end of the treatment, I felt awful again, so the nurse came and lowered my head. My blood pressure dropped to 91/39. I didn’t end up passing out, but it was really hard to not want to go to sleep. That tired me out.

The reason these episodes are confusing is because I am not having any fluid taken off. If they were removing fluid, then there may be a reason for my blood pressure to drop. But all that is happening is my blood is getting cleaned. All I can really say at this point is that I hope my blood pressure stops dropping like that. It’s a really awful feeling, and I am afraid I am going to lose bladder control and wet myself while I am sitting there. I do not want to go home in peed-in clothes. Yuck.

Other Changes
I think today was the first day I noticed that while I am tired it is a different kind of tired. It feels like the lack-of-sleep tired; not the I’ve-slept-for-eight-hours-but-still-wake-up-exhausted tired.

I also noticed that I am wanting to eat more meat. I’ve never been a huge meat eater, but the last while all I have really wanted to eat are light things, like vegetables. Now I am craving hamburgers and chicken.

I am away from home so much. I feel like it is unfair to Bruce. It seems to me as though he is pretty much single-parenting. My family comes every night I am getting a dialysis treatment to see me at the hospital, and I still read a chapter of Harry Potter to the kids every night. But for the most part I am feeling like a useless parent.

I don’t know how my son is doing with all this. Almost every day he says he wishes I didn’t have to do dialysis. I know he doesn’t like change. He used to say all the time that he wished I wasn’t in school. We are trying to help him as best we can. I just don’t know if we are or not. I guess we’ll find out in 20 years or so.

Conclusion
Overall, this is not normal yet as we are all in transition. And for those who have asked if there is anything you can do, I ask that you would pray for us. Don’t be afraid to give me a hug if you see me. Hugs are wonderful. And share with me what is going on in your life, too. Sometimes I feel so self-centered. I’d like to know how you are doing, too. We are all on a journey, and I would like to share it with you.

After the 5th

It’s no longer the beginning
But it’s not the end
A change that was coming
But a surprise none-the less

Shock, grief, resignation, acceptance
Feelings flow over
Without being identified
Getting all muddled up
And mixed together
Like a soup or a stew

But it’s not really hot
And it’s not really cold
It’s in the in-between stage
Not young, not old

A part of me wants to embrace it
And a part wants to rebel
What kind of ending will this story have?
Do I want to know?

This will end the way all things tend to end
It will stop being new
It will become “normal” and “routine”

But what I am really waiting for
What I am afraid to hope for
Is the day I will say,
“I feel so good now!
I had forgotten what good felt like.”

And now that I have said it out loud,
I am afraid that day will not come.