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.
Thursday, March 08, 2012
Monday, February 27, 2012
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.
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.
Saturday, February 25, 2012
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.
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.
Wednesday, February 08, 2012
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. Ihad 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)
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
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.
Monday, February 06, 2012
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.
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.
Tuesday, January 31, 2012
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.
“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
Jan 20
Jan 21
Jan 24
Jan 31
“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.
Friday, January 27, 2012
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.
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.
Wednesday, January 25, 2012
After the 4th Dialysis Treatment
I feel like I am not really me. I know that sounds like something out of a science fiction story, but I am not sure how else to describe how I am feeling.
As I was walking to class this morning, it felt as though I was willing myself to walk, but it sort of isn't me walking. My head feels light and foggy. My limbs are kind of numb. Not like when you cut off the circulation and they are tingling. It's more like an anesthetic - everything is surreal. I am performing these actions, but it is a little like going through the motions. I keep going because this is what I have always done.
No, I am not drugged. I almost wish I was. My arm hurts. My back hurts. I ache all over. And I want to sleep but can't.
This makes me glad that my life is fairly routine. I know what is coming and I can keep going. I feel like this whole dialysis thing is a huge adjustment. I think before I started I assumed that it would just become the new normal. But it is not feeling normal, yet. I know, it has only been one week. And I know that I was told it would be about a month before I noticed an improvement in the way I feel. But somehow that doesn't stop my expectations that I should be able to just keep on going.
In a way, I guess that is what I am doing. It is just that I am going in a dream. I wonder what my life will look like when I wake up?
As I was walking to class this morning, it felt as though I was willing myself to walk, but it sort of isn't me walking. My head feels light and foggy. My limbs are kind of numb. Not like when you cut off the circulation and they are tingling. It's more like an anesthetic - everything is surreal. I am performing these actions, but it is a little like going through the motions. I keep going because this is what I have always done.
No, I am not drugged. I almost wish I was. My arm hurts. My back hurts. I ache all over. And I want to sleep but can't.
This makes me glad that my life is fairly routine. I know what is coming and I can keep going. I feel like this whole dialysis thing is a huge adjustment. I think before I started I assumed that it would just become the new normal. But it is not feeling normal, yet. I know, it has only been one week. And I know that I was told it would be about a month before I noticed an improvement in the way I feel. But somehow that doesn't stop my expectations that I should be able to just keep on going.
In a way, I guess that is what I am doing. It is just that I am going in a dream. I wonder what my life will look like when I wake up?
Sunday, January 22, 2012
Treatment #3
I am not feeling well. I think it is from the dialysis treatment I had last night, but I am not sure why. My understanding is that my not feeling well would be expected if I were getting fluid taken off with my treatments, but I am not. I still pass fluid on my own. The dialysis is only to clean my blood.
My third treatment went well. It was my first 4-hour session. The needle went in without any problems, and my machine didn’t clot up at all. I say “the needle” because even though this was the third treatment, only one needle is being used instead of two. They are going to do this for a week to let my arm heal.
It feels like my whole week has been consumed with starting dialysis. I suppose it kind of has. For the last 4 out of 5 days, I was at the hospital. It will be nice to have a two-day break.
Many people have asked me how I am going to manage continuing with school and work with being on dialysis. I am hoping it will eventually just become routine and that I will feel better. The doctors and nurses have said it will be about a month before I start to feel an improvement. So I guess in the meantime I will just hang in there and ride it out.
PS - I found out the gentleman from the first night who didn’t look very well died the next day. His name is Rene, for those who wish to pray for him and/or is his family.
My third treatment went well. It was my first 4-hour session. The needle went in without any problems, and my machine didn’t clot up at all. I say “the needle” because even though this was the third treatment, only one needle is being used instead of two. They are going to do this for a week to let my arm heal.
It feels like my whole week has been consumed with starting dialysis. I suppose it kind of has. For the last 4 out of 5 days, I was at the hospital. It will be nice to have a two-day break.
Many people have asked me how I am going to manage continuing with school and work with being on dialysis. I am hoping it will eventually just become routine and that I will feel better. The doctors and nurses have said it will be about a month before I start to feel an improvement. So I guess in the meantime I will just hang in there and ride it out.
PS - I found out the gentleman from the first night who didn’t look very well died the next day. His name is Rene, for those who wish to pray for him and/or is his family.
Saturday, January 21, 2012
My 2nd Dialysis Appointment – Part II
When I was told I had to come back for dialysis the next day, I was a little concerned about how busy my day would be. I had class in the morning, work right after class, and then had to get to the hospital by 5 for my treatment. I hadn’t planned to drive myself to dialysis this soon, but that was how it was going to have to be seeing as my schedule, and Bruce’s, were busy. Everything would be fine so long as I remembered to bring everything I needed for the whole day.
I really wish I handled surprises better than I do. I hate surprises. When I was younger I always wanted a surprise party. But the only time I ever had a surprise party thrown for me, I had a hard time enjoying it because I wasn’t prepared for it. I told a friend of mine that I worried about being a good lawyer because I don’t think fast on my feet. I need time to process things and like to be prepared. She said that was a great thing because the best lawyers are not surprised, but are actually well prepared. But I think there is still some value to being able to react well to surprises.
I was surprised when I got a call over lunch at work from the hospital saying there was some miscommunication and that the doctor had wanted me to come for a treatment in the day not the evening. Therefore, I was supposed to be at the hospital for 12 noon, and it was already 12:30. The reason was because the doctor wanted to look at my access in case it was not usable or if they couldn’t needle it, there would be other options available. Whereas if I went at 5 and my access couldn’t be needled, it would be the weekend, and nothing could be done over the weekend. She wanted to make sure I wouldn’t get too sick. But having to leave work was not good as there was unfinished work that had to be done. That meant someone else would have to do it, and that didn’t seem fair to me. Bruce tried to point out to me later that there was nothing I could do, but I still felt like I was at fault. Seeing as there really wasn’t much else I could do, however, I made arrangements at work and headed to the hospital.
This time everything went really well. My arm is still swollen and hurts, but I was taking Tylenol for the pain. One of the nurses from the first treatment was there and consulted with my nurse about needling my access. They decided to just use one needle again and went higher up my arm to leave the sore part alone. They also discussed how it appeared that it was better not to put a tourniquet on, but rather had one nurse just hold some pressure above the site to help the nurse who was needling. They actually discovered that if there was too much pressure, they would lose my pulse. This time the needle went in and everything was fine.
I was a little creeped out when the nurse had me hold my tubes of blood. They were warm. We had a discussion how she thought that was fascinating. I do not. I think it’s not going to be very long before all of them at the dialysis unit get tired of hearing me say, “There is a reason I went into law and not medicine.” I think I may stop saying it, as I’m getting tired of it! Then again, maybe I won’t.
There isn’t much more to say about the treatment. It was smooth sailing from there on in. The doctor came, and she was super nice. I talked with the social worker for a while, and she was interested in hearing about law stuff which was cool because I love talking about it. There was a very charismatic nurse, and he made me feel comfortable even when I was scared. I was on the machine for three hours, and it didn’t clot up at all. That was without the medication to prevent clotting. They didn’t want to give it to me because of the huge bruise on my arm. They want it to heal.
When everything was done, I packed up and headed home. I didn’t feel like passing out, but once I was home I was really tired. My son asked if I would always be tired when I got home from dialysis. I said I don’t know, as this is only my second time. But I most likely will be, anyway, because my treatments will normally be in the evenings, so by the time I get home, it will be bedtime.
I spent the evening resting with ice on my arm. The doctor said to keep icing it over the weekend. My treatments for the next week are also going to be one-needle treatments in the hopes that it will give my arm a chance to heal. But I still have to go for dialysis again today. Two days in a row. Lucky me.
There was a nice surprise for me when I got home - some beautiful flowers and a card from my co-workers. I really like everyone I work with. There are so many blessings in my life. And I am thankful for each one.
Thank you, for your thoughts and prayers. They are truly appreciated.
I really wish I handled surprises better than I do. I hate surprises. When I was younger I always wanted a surprise party. But the only time I ever had a surprise party thrown for me, I had a hard time enjoying it because I wasn’t prepared for it. I told a friend of mine that I worried about being a good lawyer because I don’t think fast on my feet. I need time to process things and like to be prepared. She said that was a great thing because the best lawyers are not surprised, but are actually well prepared. But I think there is still some value to being able to react well to surprises.
I was surprised when I got a call over lunch at work from the hospital saying there was some miscommunication and that the doctor had wanted me to come for a treatment in the day not the evening. Therefore, I was supposed to be at the hospital for 12 noon, and it was already 12:30. The reason was because the doctor wanted to look at my access in case it was not usable or if they couldn’t needle it, there would be other options available. Whereas if I went at 5 and my access couldn’t be needled, it would be the weekend, and nothing could be done over the weekend. She wanted to make sure I wouldn’t get too sick. But having to leave work was not good as there was unfinished work that had to be done. That meant someone else would have to do it, and that didn’t seem fair to me. Bruce tried to point out to me later that there was nothing I could do, but I still felt like I was at fault. Seeing as there really wasn’t much else I could do, however, I made arrangements at work and headed to the hospital.
This time everything went really well. My arm is still swollen and hurts, but I was taking Tylenol for the pain. One of the nurses from the first treatment was there and consulted with my nurse about needling my access. They decided to just use one needle again and went higher up my arm to leave the sore part alone. They also discussed how it appeared that it was better not to put a tourniquet on, but rather had one nurse just hold some pressure above the site to help the nurse who was needling. They actually discovered that if there was too much pressure, they would lose my pulse. This time the needle went in and everything was fine.
I was a little creeped out when the nurse had me hold my tubes of blood. They were warm. We had a discussion how she thought that was fascinating. I do not. I think it’s not going to be very long before all of them at the dialysis unit get tired of hearing me say, “There is a reason I went into law and not medicine.” I think I may stop saying it, as I’m getting tired of it! Then again, maybe I won’t.
There isn’t much more to say about the treatment. It was smooth sailing from there on in. The doctor came, and she was super nice. I talked with the social worker for a while, and she was interested in hearing about law stuff which was cool because I love talking about it. There was a very charismatic nurse, and he made me feel comfortable even when I was scared. I was on the machine for three hours, and it didn’t clot up at all. That was without the medication to prevent clotting. They didn’t want to give it to me because of the huge bruise on my arm. They want it to heal.
When everything was done, I packed up and headed home. I didn’t feel like passing out, but once I was home I was really tired. My son asked if I would always be tired when I got home from dialysis. I said I don’t know, as this is only my second time. But I most likely will be, anyway, because my treatments will normally be in the evenings, so by the time I get home, it will be bedtime.
I spent the evening resting with ice on my arm. The doctor said to keep icing it over the weekend. My treatments for the next week are also going to be one-needle treatments in the hopes that it will give my arm a chance to heal. But I still have to go for dialysis again today. Two days in a row. Lucky me.
Thank you, for your thoughts and prayers. They are truly appreciated.
Friday, January 20, 2012
My 2nd Dialysis Appointment - In 2 Parts
My arm hurts. My arm really hurts. Like after surgery kind of hurts.
So I thought I was going to be a trooper. I survived the first treatment, and other than my blood clotting, everything was fine. This time they would put the blood thinner medication in and we would just truck along, right?
Wrong. And it had started out so well . . . . .
As soon as I got up to the dialysis unit, the nurse told me what bed I was going to and let me go in. I weighed myself and found my bed. I was even excited because it was kind of by itself in this little cubbyhole type room.
That was going to be perfect for when my family showed up. We’d have a little privacy and not disturb anyone around us when I read Harry Potter to the kids (we are on the 6th book - The Half-Blood Prince). I set out my laptop, textbook and other school paraphernalia while I waited for the nurse(s) to come hook me up to my machine. I was a little nervous, especially when one nurse says to me, “we’ve been a little crazy around here today,” but that happens, and everything should still be okay. Or so I thought.
The next nurse comes, and I guess since this isn’t my first time I don’t need the kid-glove treatment anymore. Okay. I still feel like a newbie, but maybe that’s not the way it works here. That’s fine. I was looking forward to my family coming, anyway, so the sooner I can get hooked up to that machine, the better.
Well, first of all, this nurse didn’t seem to really look at my fistula access the way the other nurses had. She just put that tourniquet as tight as she could around my arm and poked with the needle. OH MY GOODNESS!!!!! Did that ever HURT! I had put the cream on, so I thought it shouldn’t hurt. It didn’t last time! I don’t know what she was doing because I wasn’t looking. The way I cope is by not watching. A little ostrich-like, I know, but, hey, it works. What it felt like was that she was digging around in my arm. And when she couldn’t find what she was looking for, she tried again. I don’t think she poked me more than once, but I don’t know for sure. What I do know is that I started crying. I tried really hard not to. But I couldn’t stop myself.
What ended up happening is the blood leaked into the tissue of my arm. I heard that “it” was blown. I assume they meant my fistula. And now I have this huge lump in my arm. And the lump really hurts. On the plus side, the nurse mentioned that even as she was needling me I was starting to clot. So I figured I wouldn’t bleed to death, anyway.
Eventually I started shaking uncontrollably, and so a nurse brought me a warm blanket. Then my family showed up, which made me feel much better.
My kids are a soothing balm to my soul. What a joy and comfort they bring me. I am so lucky to be their mom.
But I am beginning to think that there will always be people around to keep me humble. A gentleman showed up and started telling me how they’ll have to send me for surgery. He was mostly harmless, but it was still a little disconcerting to hear some of the things he was saying. Particularly as I was not in a great frame of mind. A nurse rescued me, though, and mentioned to him that maybe he should let me rest. He met up with us as we were heading home and said he had been scolded for scaring my kids. I think he frightened me more than them!
We had to wait a while before they let me go even though I wasn’t hooked up to the dialysis machine. They were checking my blood to make sure they could let me go and didn’t need to try needling me again. Since my potassium levels were okay. I was sent home. But my creatinine was at 535 - which is high - and so I was asked to come back to the hospital the next day rather than wait until Saturday. So I was booked for 5 the next day (Friday) and I planned to make the next day’s trip solo.
So I thought I was going to be a trooper. I survived the first treatment, and other than my blood clotting, everything was fine. This time they would put the blood thinner medication in and we would just truck along, right?
Wrong. And it had started out so well . . . . .
As soon as I got up to the dialysis unit, the nurse told me what bed I was going to and let me go in. I weighed myself and found my bed. I was even excited because it was kind of by itself in this little cubbyhole type room.
The next nurse comes, and I guess since this isn’t my first time I don’t need the kid-glove treatment anymore. Okay. I still feel like a newbie, but maybe that’s not the way it works here. That’s fine. I was looking forward to my family coming, anyway, so the sooner I can get hooked up to that machine, the better.
Well, first of all, this nurse didn’t seem to really look at my fistula access the way the other nurses had. She just put that tourniquet as tight as she could around my arm and poked with the needle. OH MY GOODNESS!!!!! Did that ever HURT! I had put the cream on, so I thought it shouldn’t hurt. It didn’t last time! I don’t know what she was doing because I wasn’t looking. The way I cope is by not watching. A little ostrich-like, I know, but, hey, it works. What it felt like was that she was digging around in my arm. And when she couldn’t find what she was looking for, she tried again. I don’t think she poked me more than once, but I don’t know for sure. What I do know is that I started crying. I tried really hard not to. But I couldn’t stop myself.
Eventually I started shaking uncontrollably, and so a nurse brought me a warm blanket. Then my family showed up, which made me feel much better.
My kids are a soothing balm to my soul. What a joy and comfort they bring me. I am so lucky to be their mom.
But I am beginning to think that there will always be people around to keep me humble. A gentleman showed up and started telling me how they’ll have to send me for surgery. He was mostly harmless, but it was still a little disconcerting to hear some of the things he was saying. Particularly as I was not in a great frame of mind. A nurse rescued me, though, and mentioned to him that maybe he should let me rest. He met up with us as we were heading home and said he had been scolded for scaring my kids. I think he frightened me more than them!
We had to wait a while before they let me go even though I wasn’t hooked up to the dialysis machine. They were checking my blood to make sure they could let me go and didn’t need to try needling me again. Since my potassium levels were okay. I was sent home. But my creatinine was at 535 - which is high - and so I was asked to come back to the hospital the next day rather than wait until Saturday. So I was booked for 5 the next day (Friday) and I planned to make the next day’s trip solo.
Thursday, January 19, 2012
My First Dialysis Treatment
There is a reason I decided early on I didn’t want to do anything in medicine. It’s not just because of the shift work that is usually involved, but because I hate needles and don’t really like the sight of blood very much. Oh, I can handle a paper cut. And if my kids ever get nosebleeds, I can deal with those. But it was a whole other experience to see tubes filled with my blood lying across my lap.
Let me go back a step or two . . . . .
For my first treatment, I had my husband drop me off at the hospital. First because it is absolutely frigid temperatures outside (in the minus 40s with the wind chill), but also because I didn’t know what I would feel like when the treatment was done.
There were a LOT of people waiting to get in for their treatments. Treatment times are at 7 a.m., 12 noon, and 5 p.m. I had the 5 p.m. time slot, which is not even the busiest time, I was told. I don’t know how many spaces there are in the unit, but I was in bed 27, so there are at least that many. I noticed there were some chairs and some beds. I overheard one lady saying that she wanted to make sure she was in a bed because last time she was in a chair, it nearly killed her. I had a bed, but am wondering if I would find the chair more comfortable, as I asked to be sitting up so I could read. Apparently the hospital is trying to move toward having all chairs. I’ll be keeping an ear out to hear the reasoning for that. I think if the man across from me had to sit in a chair during his treatment, he would have been even more unwell than he already looked. But I’ll get back to him in a minute.
Initially when I was told my treatments would be four hours, I assumed that meant I would be at the hospital from 5 to 9. Four hours, right? And then I was told my first treatment would only be two hours, I assumed I would be done about 7. See? I can do math! :) However, I was wrong. What it really means is that I was to be hooked up to the dialysis machine for two hours (and eventually four hours), plus the time at the beginning – which includes waiting, weighing, adjusting, poking and prodding (the first time, anyway) – and the time at the end – which includes pressing, waiting, packing more prodding (the first time, anyway) and weighing (yes, I get weighed at the beginning and the end, three times a week. What every woman wants. NOT!). So it is not surprising that my husband calls at about 7:30 asking why I haven’t called him yet to pick me up, and that is because I wasn’t done yet.
But again, I’m getting ahead of myself. . . .
Everyone was exceptionally nice. Well, almost everyone. All the nurses and staff were exceptionally nice. There was a lady who was not quite so nice. She was sitting with the man across from me. He looked very ill and she would make comments that she was not sure if he would make it through the night. She mentioned he was hallucinating, and he was mumbling a lot. He was definitely not in any shape to have a conversation with me. She was very concerned about him. But that isn’t why she wasn’t nice. That just explains her sarcastically said comment later in the evening which was, “Well, at least someone is happy here,” when I was joking and laughing with the people around me. The funniest (and not-so-nice) comment, though, was as I was getting onto my bed, she says to me, “You don’t work out, do you?” Now, that’s true. I don’t work out. But it was shocking because she was the same size or larger than I am. And I couldn’t believe she had actually said that out loud to me. I was very thankful that she decided she needed to go get a coffee or something, and was gone for a fairly lengthy time after that.
The nurses were very nice, though. They were willing to explain to me anything I wanted to know, and stopped explaining when I mentioned there is a reason I went into law and not medicine! They were very understanding about this being my first time, and were friendly and joking with me. I especially liked the male nurse who was there when I was first being hooked up. We were all picking on him, and he was dishing it out – all in good fun. I hope he is there for longer sometimes when I am there.
To begin the treatment, they started me out with just one needle instead of two.
I had put the freezing cream (Emla) on my arm and wrapped it with plastic wrap, but the wrap slid down and so only the lower part of my fistula was frozen. The nurses decided since it was my first time, they would try just using one needle, and tried to explain to me the process of how that works, but I am afraid it was over my head. It was probably similar to when I try to explain a law concept to my non-law friends, it makes sense to me but everyone else’s eyes glaze over. I had the glazy-eyed look.
Because of the way my bed was set up, the tubes filled with my blood were running from my left arm, across my lap, into the machine on my right, and then back again. I have had an IV before, but it was quite a different experience to see my blood in tubes on my lap. I had to put my blanket over the tubes so I wouldn’t see them. I know. I am a suck. Did I not say there is a reason I went into law and not medicine?
I mostly didn’t feel the needle in my arm. I did a little, but when I described what I felt to the nurse, she said it was normal and not to worry. I was supposed to watch to make sure the needle didn’t slip out of place – that would be bad. But it didn’t.
Part way through my treatment, my priest, Father Bernard, and his wife come to visit me. It was such a nice surprise, especially since I hadn’t thought to see if anyone would be there with me during my first treatment. I knew that eventually I would be able to have visitors, and had been told they should wait and come after the first 45 minutes and leave before the end of the treatment as those are busy times for the nurses getting people on and off the machines. You see, I was using my math skills, and thought if someone couldn't be there the first 45 minutes or the last 45 minutes, that doesn't leave much time to be at the first treatment if it is only two hours (half an hour with a visitor, right?). I had expected I would have to do it alone, but am very glad I did not have to. I kind of wish someone had suggested to me when I was told my dialysis date that I could (or should) have someone with me the first time. In hindsight it might have seemed obvious to bring someone anyway, but I really just didn’t think of it. Yet, it really helped to have a familiar face there. In a world of strangeness, it was comforting to have a friend by my side.
It was especially nice to have had someone come to see me, since everything did not go smoothly with my first treatment. My machine started beeping about half an hour before I was supposed to be done. There was some commotion, and the nurses realized that my blood was clotting in the machine. My nurse tried to keep me going a little longer, but gave up when she realized that it was clotting too badly. Around this time she asked if I have ever donated blood before, and I said, “No.” “Well, you have today,” was her reply. The only problem is, it was going in the garbage. Too bad.
The result was that I felt a little light-headed when I was done. I thought I was doing well until she took out the needle and told me to hold the gauze where the needle was. I could feel my pulse, and the combination of losing the blood, not liking blood, and feeling my pulse made me feel like I was going to pass out. I didn’t, because they lowered my bed and gave me a cool cloth for my head, and my nurse held the gauze for me. I kept apologizing, but she reassured me that it was okay, and I was doing great. I felt silly, though.
In the end, I was okay. I would have liked to have been told that they did some extra tests when it is your first time, including having swabs inserted into various orifices of my body. When I got home, I was brain dead. I had tried to write down my experience, but couldn’t seem to get any words to string together. I am guessing it is because I had been running mostly on adrenaline and crashed after I got home.
So, while I am not a “pro,” I do feel a little more prepared for my treatment tonight. Although I get the double poke, this time. At least there won’t be any swabs being stuck in places they shouldn’t be.
Let me go back a step or two . . . . .
For my first treatment, I had my husband drop me off at the hospital. First because it is absolutely frigid temperatures outside (in the minus 40s with the wind chill), but also because I didn’t know what I would feel like when the treatment was done.
There were a LOT of people waiting to get in for their treatments. Treatment times are at 7 a.m., 12 noon, and 5 p.m. I had the 5 p.m. time slot, which is not even the busiest time, I was told. I don’t know how many spaces there are in the unit, but I was in bed 27, so there are at least that many. I noticed there were some chairs and some beds. I overheard one lady saying that she wanted to make sure she was in a bed because last time she was in a chair, it nearly killed her. I had a bed, but am wondering if I would find the chair more comfortable, as I asked to be sitting up so I could read. Apparently the hospital is trying to move toward having all chairs. I’ll be keeping an ear out to hear the reasoning for that. I think if the man across from me had to sit in a chair during his treatment, he would have been even more unwell than he already looked. But I’ll get back to him in a minute.
Initially when I was told my treatments would be four hours, I assumed that meant I would be at the hospital from 5 to 9. Four hours, right? And then I was told my first treatment would only be two hours, I assumed I would be done about 7. See? I can do math! :) However, I was wrong. What it really means is that I was to be hooked up to the dialysis machine for two hours (and eventually four hours), plus the time at the beginning – which includes waiting, weighing, adjusting, poking and prodding (the first time, anyway) – and the time at the end – which includes pressing, waiting, packing more prodding (the first time, anyway) and weighing (yes, I get weighed at the beginning and the end, three times a week. What every woman wants. NOT!). So it is not surprising that my husband calls at about 7:30 asking why I haven’t called him yet to pick me up, and that is because I wasn’t done yet.
But again, I’m getting ahead of myself. . . .
Everyone was exceptionally nice. Well, almost everyone. All the nurses and staff were exceptionally nice. There was a lady who was not quite so nice. She was sitting with the man across from me. He looked very ill and she would make comments that she was not sure if he would make it through the night. She mentioned he was hallucinating, and he was mumbling a lot. He was definitely not in any shape to have a conversation with me. She was very concerned about him. But that isn’t why she wasn’t nice. That just explains her sarcastically said comment later in the evening which was, “Well, at least someone is happy here,” when I was joking and laughing with the people around me. The funniest (and not-so-nice) comment, though, was as I was getting onto my bed, she says to me, “You don’t work out, do you?” Now, that’s true. I don’t work out. But it was shocking because she was the same size or larger than I am. And I couldn’t believe she had actually said that out loud to me. I was very thankful that she decided she needed to go get a coffee or something, and was gone for a fairly lengthy time after that.
The nurses were very nice, though. They were willing to explain to me anything I wanted to know, and stopped explaining when I mentioned there is a reason I went into law and not medicine! They were very understanding about this being my first time, and were friendly and joking with me. I especially liked the male nurse who was there when I was first being hooked up. We were all picking on him, and he was dishing it out – all in good fun. I hope he is there for longer sometimes when I am there.
To begin the treatment, they started me out with just one needle instead of two.
I had put the freezing cream (Emla) on my arm and wrapped it with plastic wrap, but the wrap slid down and so only the lower part of my fistula was frozen. The nurses decided since it was my first time, they would try just using one needle, and tried to explain to me the process of how that works, but I am afraid it was over my head. It was probably similar to when I try to explain a law concept to my non-law friends, it makes sense to me but everyone else’s eyes glaze over. I had the glazy-eyed look.
Because of the way my bed was set up, the tubes filled with my blood were running from my left arm, across my lap, into the machine on my right, and then back again. I have had an IV before, but it was quite a different experience to see my blood in tubes on my lap. I had to put my blanket over the tubes so I wouldn’t see them. I know. I am a suck. Did I not say there is a reason I went into law and not medicine?
I mostly didn’t feel the needle in my arm. I did a little, but when I described what I felt to the nurse, she said it was normal and not to worry. I was supposed to watch to make sure the needle didn’t slip out of place – that would be bad. But it didn’t.
Part way through my treatment, my priest, Father Bernard, and his wife come to visit me. It was such a nice surprise, especially since I hadn’t thought to see if anyone would be there with me during my first treatment. I knew that eventually I would be able to have visitors, and had been told they should wait and come after the first 45 minutes and leave before the end of the treatment as those are busy times for the nurses getting people on and off the machines. You see, I was using my math skills, and thought if someone couldn't be there the first 45 minutes or the last 45 minutes, that doesn't leave much time to be at the first treatment if it is only two hours (half an hour with a visitor, right?). I had expected I would have to do it alone, but am very glad I did not have to. I kind of wish someone had suggested to me when I was told my dialysis date that I could (or should) have someone with me the first time. In hindsight it might have seemed obvious to bring someone anyway, but I really just didn’t think of it. Yet, it really helped to have a familiar face there. In a world of strangeness, it was comforting to have a friend by my side.
It was especially nice to have had someone come to see me, since everything did not go smoothly with my first treatment. My machine started beeping about half an hour before I was supposed to be done. There was some commotion, and the nurses realized that my blood was clotting in the machine. My nurse tried to keep me going a little longer, but gave up when she realized that it was clotting too badly. Around this time she asked if I have ever donated blood before, and I said, “No.” “Well, you have today,” was her reply. The only problem is, it was going in the garbage. Too bad.
The result was that I felt a little light-headed when I was done. I thought I was doing well until she took out the needle and told me to hold the gauze where the needle was. I could feel my pulse, and the combination of losing the blood, not liking blood, and feeling my pulse made me feel like I was going to pass out. I didn’t, because they lowered my bed and gave me a cool cloth for my head, and my nurse held the gauze for me. I kept apologizing, but she reassured me that it was okay, and I was doing great. I felt silly, though.
In the end, I was okay. I would have liked to have been told that they did some extra tests when it is your first time, including having swabs inserted into various orifices of my body. When I got home, I was brain dead. I had tried to write down my experience, but couldn’t seem to get any words to string together. I am guessing it is because I had been running mostly on adrenaline and crashed after I got home.
So, while I am not a “pro,” I do feel a little more prepared for my treatment tonight. Although I get the double poke, this time. At least there won’t be any swabs being stuck in places they shouldn’t be.
Tuesday, January 17, 2012
The First Day
So..... today is the day. I have my first dialysis treatment in a few hours.
First, I just have to say that I feel as though I have the most amazing and wonderful people surrounding me and my family. THANK YOU for all your support, whether it has been here or on Facebook or in person. I hold onto the encouraging words that are given to me like a life line. You have no idea how helpful they are.
Second, I am not sure if I am nervous, anxious or downright terrified about what I am going to experience this evening. I keep saying that I know, intellectually, that everything is going to be okay. But it is kind of like when I want to say something in a group or in class, and there is that nervous feeling in the pit of my stomach. And generally, in spite of that feeling, I put up my hand to say something anyway. If I just plow through it, then it’s done and I can move on. That is a little how I am viewing tonight. No matter how my stomach feels, I’m going to put out my arm and plow through it.
Today is only a two hour treatment. Eventually I will be doing four hours a session, three times a week. Someone likened it to a part-time job. Yeah. Sort of. But apparently I will be able to do school work through the process, so that’s good. Maybe it’s a good thing that I have been working while going to school. It gave me practice at time management. :)
An hour before my treatment I have to put a cream on my arm to numb it. I have been told they will put two needles in my fistula access (I had the surgery for my access last year in April). I tried taking a picture of my arm to show you the fistula, but it doesn’t show up very well. My arm looks lumpy where they joined the artery and vein together. And “the lumpy” has been getting bigger over the months – which is good and normal, I am told.
I’ll have to bring my own blanket. And my books to read, of course. I was wondering what I was going to do in the summer when I don’t have school work, but then realized that between the TV shows I want to watch and the books I want to read for fun, I should be okay for a while. And a friend said if I ever wanted company, she would be more than willing to come visit. An excuse for visiting..... I can live with that! Do you think they’ll let me arrange parties at the clinic, too? I always say I’m looking for excuses to have a party. Maybe not so much today, though. Or the next few weeks. I am supposed to start feeling better in a month or so.
If I feel up to it, I’ll let you know how I’m doing after my treatment.
PS – I hate needles.
First, I just have to say that I feel as though I have the most amazing and wonderful people surrounding me and my family. THANK YOU for all your support, whether it has been here or on Facebook or in person. I hold onto the encouraging words that are given to me like a life line. You have no idea how helpful they are.
Second, I am not sure if I am nervous, anxious or downright terrified about what I am going to experience this evening. I keep saying that I know, intellectually, that everything is going to be okay. But it is kind of like when I want to say something in a group or in class, and there is that nervous feeling in the pit of my stomach. And generally, in spite of that feeling, I put up my hand to say something anyway. If I just plow through it, then it’s done and I can move on. That is a little how I am viewing tonight. No matter how my stomach feels, I’m going to put out my arm and plow through it.
Today is only a two hour treatment. Eventually I will be doing four hours a session, three times a week. Someone likened it to a part-time job. Yeah. Sort of. But apparently I will be able to do school work through the process, so that’s good. Maybe it’s a good thing that I have been working while going to school. It gave me practice at time management. :)
An hour before my treatment I have to put a cream on my arm to numb it. I have been told they will put two needles in my fistula access (I had the surgery for my access last year in April). I tried taking a picture of my arm to show you the fistula, but it doesn’t show up very well. My arm looks lumpy where they joined the artery and vein together. And “the lumpy” has been getting bigger over the months – which is good and normal, I am told.
I’ll have to bring my own blanket. And my books to read, of course. I was wondering what I was going to do in the summer when I don’t have school work, but then realized that between the TV shows I want to watch and the books I want to read for fun, I should be okay for a while. And a friend said if I ever wanted company, she would be more than willing to come visit. An excuse for visiting..... I can live with that! Do you think they’ll let me arrange parties at the clinic, too? I always say I’m looking for excuses to have a party. Maybe not so much today, though. Or the next few weeks. I am supposed to start feeling better in a month or so.
If I feel up to it, I’ll let you know how I’m doing after my treatment.
PS – I hate needles.
Friday, January 13, 2012
Another Change. Another Beginning
It has only been 2 days…… and I already feel like my whole life has changed.
I had a doctor’s appointment Wednesday. It wasn’t anything unusual in that I have been going to the Chronic Kidney Disease Unit for years already. It has been no secret that I live with PKD (polycystic kidney disease), and that I am regularly monitored for kidney function. Sometimes when people find out, they are surprised. I guess because I have a chronic illness I shouldn’t be raising a family, working and going to law school. I’ll admit, some days it feels a little crazy, but I assume everyone’s life is to some extent.
And I have known that I am in kidney failure. I have said it enough times to people. But it didn’t seem like a big deal. Yes, I knew dialysis was coming. I knew it would happen “some day.” I just didn’t really believe that “some day” would be so soon. I really thought it was further away. But it’s not. The day has come. Tuesday, in fact, will be my first dialysis treatment.
When they told me Wednesday that it was time and they would book something for me within the next week or two, I was fine. It was still “some day.” But today I got the call, and I start on Tuesday -- my first treatment. All of a sudden it’s real. This is really happening to me. I am really going to have to readjust the way I live my life. Everything will be planned around my treatments.
So, now what is the etiquette for this? Do I have to tell people personally? A part of me wants to tell everyone I see, and a part of me doesn’t want to really talk about it at all for fear that I’ll start crying. I guess that is why I came here. A “safe” place to share.
The nurses kept asking me how I was doing. I said I honestly didn’t know if I was handling it well, or if I was in shock. Overwhelmed may be a good way to describe how I’m feeling. There is so much to arrange. So much to re-arrange. So much to consider and still to do.
I have a friend who is concerned that I don’t know how to say “no” and that I’ll take on too much, still. I suppose I am a little bit of an over-achiever. Sometimes, anyway. I think it is because I am afraid I will be seen as being lazy. So will I be lazy if I can’t keep doing all the things I do and be on dialysis? I know already there will be some who will say there is no reason why I can’t keep doing everything. I would just need to make sure I manage my time properly. Do those people realize there are times when I would love to just say, “to heck with everything” and throw up my hands and give up? When is enough enough? When is it okay to say, “I can’t do that,” and not have someone think less of me?
I’ll tell you something, though. There is no way I am going to give up on my family. And there is no way I’m going to quit school. I am going to get my law degree, and I am going to do my best to keep a healthy family in the process. And my faith is my anchor, so….. that is my starting point. Every day is a blessing, as are the people in my life.
Thank you, for being a blessing in my life.
I had a doctor’s appointment Wednesday. It wasn’t anything unusual in that I have been going to the Chronic Kidney Disease Unit for years already. It has been no secret that I live with PKD (polycystic kidney disease), and that I am regularly monitored for kidney function. Sometimes when people find out, they are surprised. I guess because I have a chronic illness I shouldn’t be raising a family, working and going to law school. I’ll admit, some days it feels a little crazy, but I assume everyone’s life is to some extent.
And I have known that I am in kidney failure. I have said it enough times to people. But it didn’t seem like a big deal. Yes, I knew dialysis was coming. I knew it would happen “some day.” I just didn’t really believe that “some day” would be so soon. I really thought it was further away. But it’s not. The day has come. Tuesday, in fact, will be my first dialysis treatment.
When they told me Wednesday that it was time and they would book something for me within the next week or two, I was fine. It was still “some day.” But today I got the call, and I start on Tuesday -- my first treatment. All of a sudden it’s real. This is really happening to me. I am really going to have to readjust the way I live my life. Everything will be planned around my treatments.
So, now what is the etiquette for this? Do I have to tell people personally? A part of me wants to tell everyone I see, and a part of me doesn’t want to really talk about it at all for fear that I’ll start crying. I guess that is why I came here. A “safe” place to share.
The nurses kept asking me how I was doing. I said I honestly didn’t know if I was handling it well, or if I was in shock. Overwhelmed may be a good way to describe how I’m feeling. There is so much to arrange. So much to re-arrange. So much to consider and still to do.
I have a friend who is concerned that I don’t know how to say “no” and that I’ll take on too much, still. I suppose I am a little bit of an over-achiever. Sometimes, anyway. I think it is because I am afraid I will be seen as being lazy. So will I be lazy if I can’t keep doing all the things I do and be on dialysis? I know already there will be some who will say there is no reason why I can’t keep doing everything. I would just need to make sure I manage my time properly. Do those people realize there are times when I would love to just say, “to heck with everything” and throw up my hands and give up? When is enough enough? When is it okay to say, “I can’t do that,” and not have someone think less of me?
I’ll tell you something, though. There is no way I am going to give up on my family. And there is no way I’m going to quit school. I am going to get my law degree, and I am going to do my best to keep a healthy family in the process. And my faith is my anchor, so….. that is my starting point. Every day is a blessing, as are the people in my life.
Thank you, for being a blessing in my life.
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