Tuesday, December 21, 2010

Saturday, December 18, 2010

I'm starting to get the hang of this

The first few nights of being home and giving myself huge fricken needles I did ok, but things didn't go Wes Montgomery smooth, there were some missed beats so to speak. I needed to use sharp needles twice and I think I may have missed the bottom hole slightly adding to my already tensed nerves. Now though things seem to be going good, knock on wood. I have been able to get both needles in with no difficulty at all for the last 6 nights of treatment. I still don't like doing it, I'm not as nervous and I still do grit my teeth and have a sick feeling in my stomach as I do it.

The hardest part I am finding though are not the needles, but getting the two feet of tubing organized so that I can maybe sleep just a little bit. The problem with the tubing is that it comes in a bundle, and it is wound up. After taking it out of the packaging it doesn't tend to want to go in a straight line. Rather it wants to go in the direction it was going in the bag it's been packed in for months. It doesn't help at all that I can only really use one arm to force it to go in the direction I it to go, and tape it in place. I'm an ace with right hand.

Figuring out positions to sleep in can be hard. When not connected I've always been a fan of laying on my face with my arms underneath my pillow. I can't really do that when connected. I've tried laying on my right side with my left arm resting on my left side. I've tried laying on my left side with my left arm extending out on it's own pillow. Or there is also on my back with my left arm on the pillow. None are all that great and after a few hours of my arm being in the same position it tends to hurt.


Friday, December 17, 2010

So it's December

It's december, in 1995 about this time I was still in the IWK hospital, I think I probably still had a catheter because of the issues I had with my two native kidneys being removed. I was probably still hoping that I would get to go home for Christmas, I mean who wants to be in a hospital for Christmas in what must have seemed like a city a million miles away. I don't really remember, but I am certain I did not. I remember there being multiple weeks where we were told that maybe next week if things improve, and multiple weeks where things did not improve and still being in hospital week after week. I was pretty miserable.

Now 15 years later that whole time really blurs, I remember bits and pieces, and I think sometimes I remember other times as being part of that time. For a few years I was at the IWK a lot. Both when I was starting to do Dialysis back then, and also when I had my transplant and then subsequent check-ups there until I graduated.

It would be around 10 years now since I was last there. It seems strange I feel like I was going to the IWK after my transplant longer than I had been going to the "Adult Doctors" here, but thinking about it I haven't. I was only going to the IWK for about 5 years after my transplant, but I have been going here for 10 years. I guess it's strange how memories work out. I was admitted more often at the IWK more often than here. I've only ever been admitted once over night here, and that was just last year for a biopsy.

Back to December 1995, as I was saying I'm sure I was hoping to go home, and I'm sure my mother who was staying at the Ronald McDonald house hoped to go home. I'm not sure if she would have known for sure that we were not going to get home. Looking back as an adult now I would say she would have had to known. That Christmas was spent at the Ronald McDonald house along with the other families of children who were stuck at a hospital during what should be a child's favorite time of year. I guess on the bright side I was considered healthy enough for a night pass and didn't have to actually stay in the hospital over christmas.


Thursday, December 16, 2010

Why worry?

I few months ago when I was just starting this blog I wrote an entry about not worrying about things. Now while this is still generally true, I still feel as if I'm in control of my treatments, but something has changed. I've found myself worrying about things going wrong during treatment or even after. I worry about the needles in my arm slipping out while I sleep, and a likely scenario to that is that I would bleed out if my liquid sensors don't work, so I make sure those work. Also not quite as dramatic I worry about missing another call to Halifax, which is probably why I was so upset in my last post about a wrong number call at midnight.

For my first worry, it's not really that I didn't worry about something bad happening or take the precautions to make sure it didn't, but I did accept it as a possibility. I began thinking about why I am more worried now than before. I came to the conclusion that it's because I feel I have more hope that I will actually get a kidney sooner rather than later. Before I had my call last month I really didn't think about it much.

Almost everybody I had talked to on dialysis at the unit before coming home had been on dialysis for years, almost always double digit years. So that is to say I had little or no hope that I was going to get a kidney anytime soon. I accepted that I was doing Dialysis in the meantime. Now though I'm doing dialysis until I get a kidney, and that could be anytime, not just a long insurmountable, undeterminable amount of time in the future, it could be soon now.

As far as my 2nd worry, I think my first explanation covers it. Getting a call is actually a reality for me now. I'm always listening for my phone. I always keep my cell phone that I have just for that call handy and charged and topped up. I'm ready to go, I think about going now.

I think this has given me more to hold on too and more to hope. Hope that I will be able to get off dialysis at least sometime rather than never, because even though I'm getting the best possible care, and the best possible dialysis, it doesn't change that dialysis seriously sucks balls.

So why do I worry now? I worry now because I have hope.


Sunday, December 12, 2010

I am about to explode!

I am so angry right now. I do not think I have ever been this angry in all my life. I'm sitting here in bed watching the latest episode of "The League" (Hilarious show BTW, even if you are not into football) when I hear the house phone ringing. I'm not all that mobile having two huge needles in my arm but I manage to pause the show and answer the phone.

It's midnight, and somebody is calling, of course I'm thinking holly shit I'm on my way to halifax again. The cocktard women on the other end asks for Owen Hetherington... how many Owen Hetherington's can there be? Now I'm sure, my heart is racing, hot damn, fuck my two front teeth I'm getting a kidney for christmas! Then she asks Owen Hetherington, who works for Irving oil? WHAT THE SHIT! I say no and she starts apologizing, but before she even gets any words out I've hung up the phone.

Seriously?! If you are going to call people at midnight. Make sure you are calling the right people before you do, I am just so angry right now. I don't know if I'm going to be able to sleep tonight, I am still shaking, my heart is still just pounding in my chest, I don't care if it was a mistake, I hope that women gets hit by a bus and I'll personally take her kidneys. I wish we had caller ID and I'd harass the shit out her for months.

Saturday, December 4, 2010

Well I've done it.

Hopefully in the long line of things I've had to do in the last year that I didn't really want to do, but figured once I did it, I'd get "used" to it. This time it was giving myself needles at home alone. Yes I have been giving myself needles for the last 6 weeks, but this was the first time doing it myself at home without a nurse around if I fraked it up. I was nervous, I felt sick to my stomach and I was shaking. I got it done though.

I did have one small issue, I was not able to get a sharp needle into my lower spot, I think probably because of fluid build up the vein was just big and tough. In the future this should not be a problem because there will never be the amount of time between treatments as there was between Thursday day and tonight. I was able to get a dull into my upper spot though, it did take some "fishing" (wiggling it around) to get it in, but it seems to be in good now.

The other things I've had to force myself to do have been, of course the first time giving myself the needles, sharp or dull, that was a hard one. I was nervous going in, but after I did it a few times it's not so bad. Thats not really something I suspect anyone expects themselves to ever say. Giving myself needles is no so bad.

The other thing was one I was originally doing my training with the central line. The first time having to put the syringe on and then pull blood back was strange. It wasn't something I wanted to do. It doesn't hurt, it just seemed strange to be pulling my own blood out. Even though nurses had been doing it for almost a year, doing it yourself is still different somehow.

I guess I may have one more hurdle in the future, if I ever have to give myself a needle in the alternate spot, I've only done this once before, and it will be giving myself a needle one alone into a spot without any freezing.


Friday, December 3, 2010

Another leak

Just my luck. There is another leak in my water lines going to the machine. This one is after the filtering tanks, but before the disafe filter. I'm not sure if I can go on with this, so I've called the nurse and waiting for a call back after she has called the biomed department to check. Currently my money is on that I wont be able to go on tonight. Hopefully I could have somebody out to fix it tomorrow though. FML


Thursday, December 2, 2010

I'm Home

After a possible issue yesterday with a leak in my filter tanks I'm actually now doing Dialysis back at home. The tanks were replaced yesterday  and after the guy left I went to rinse the system and found a major leak. My heart just dropped, if this wasn't going to be able to be fixed I wasn't going to be able to go on today at home. I called the after hours nurse line, and they said that they wont be able to get anybody out tonight (last night).

If it couldn't be fixed I was going to have to go back to the hospital today. I really didn't want to do that. My father was due to be home in about an hour so I let them know that, and they said they would callback later. After eating dinner my father took a look at the tanks and it turned out it was just a loose line. He was able to tighten it and fixed the issue. That was a relief.

Today my training nurse came out, and just made sure I still remembered how to set the machine up correctly after 6 weeks of not doing it. She stood back and watched as I was able to get both dull needles in without a hitch, they just slid right in, I hardly felt a thing. I am currently hooked up and going, there is 6 hours and 30 minutes remaining. This is day 1 of being back home, here is hoping I don't have too many more days until I get another call to go to Halifax.