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.


Tuesday, November 30, 2010

Where I'm at

To the tune of "Where it's at" by Beck

There's two holes a little up my arm
From my elbow and between my shoulder you know
A place where the blood vibrates as it flows
Stick the needle in and get a fresh flow
Sending blood to the machine to make my creatinine low
Two dull needles in a fistula
Bottles of bicarb
just sitting there and just setting there

Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Let me go home, my blood pressure is ok
Thats not something I can fake

I wont end up on the side of the road
With my high pulse and low BP, I feel ok
Blood type O+ only
Shipped miles by ambulance drivers
Pack my shoes and have no flu
Showers at 3am the sky is blue
Driving 5 hours to Halifax
let the kidney match

Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Final antibodies are positive
Lets get out of here

I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula

Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula


Friday, November 26, 2010

I was finally able to get two dull needles in

I was finally able to do it, today I was able to get two dull needles in, one in the lower and one in the upper holes. They really just slid right in, there was a little bit of pressure needed for the bottom on. The upper one however I didn't even know it was in until I pulled back on the syringe a little. It just slid right in, no more pressure was required than the ultra sharp ones I had been using.

The plan for next week will be I'm back at the hospital Monday and Tuesday to make sure I can continue to do this. I'll be off Wednesday and then I'll be doing my first treatment using the needles at home on Thursday, it will be during the day for 7 hours my nurse is going to come out. The final plan is to get me back to work by the next week. Only 1 week later than expected.

I'm still not pleased with having to give myself needles, I don't think it's something I could ever get used to, but at the moment it's something I need to do, and it gives my more freedom than having the line in my chest. Lets hope I get another call for a kidney soon so that I don't have to continue to needle myself.


Thursday, November 25, 2010

A week of dulls and sharps, needles and pain.

Here is the weekly recap. I started Monday out with a bang. We tried dull needles, in both the upper and lower holes. I tried the lower hole first, and it simply was not going it. I could get in through the skin and tissue, but it wasn't going into the vein. At one point I actually thought I got it in, I felt a pop and the needle moved forward. This was probably just the vein moving out of the way. My nurse then tried her hand at it, and it did the same thing, except this time is scraped the side. If anybody has ever given blood before and they accidentally pierced from the inside of the vein out, it hurts.. a lot. This however was 1000 times that pain, it may have been one of the most painful things I have felt in a long time. We decided at that point to just use a sharp needle in the lower hole. I was able to do this myself and get it right in, even after that immense pain.

After that we moved on to the upper needle, after the problems with the first I was hesitant to try the dull again, especially in the upper hole as this is the one I'm still not 100% comfortable with because it is rather hard to feel. I figured this is something that needs to get done though, and just swallowed my fear and agreed to the dull needle again.

Once again the dull needle was not going in, I tried and the nurse tried but I stopped her because I was simply still jittery about the pain I had just experienced and did not want to risk it again. I took over with a sharp needle and I was able to get in in. Or so I thought.

For the first hour of treatment the veinous pressures were higher than usual, and they kept creeping up. The max pressure that has been deemed safe is 200, and it was now jumping between 200 and 210 at a slow rate (ml/min). It turns out I hadn't inserted the needle into the fistula vein, it was in another vein that ran on top of the fistula vein. The nurse took the needle out.

She decided that she was going to put it pack in in a different spot, just slightly above my normal area. She froze the area with a shot, and then she put it in, and again it ended up in the wrong vein. Next we tried a spot just under my lower hole, she stuck the freezing in. By mistake, because the vein here is right up against the skin, she stuck the freezing into the vein. The freezing needles to be in tissue, not a vein so she could not administer it. She stuck the needle in, and got it right in the correct vein. This was the last needle for the day, but if you are counting that is 8 needles in total in my arm that day. It was not a fun day.

The rest of the week has been fairly uneventful, we have finally started getting dull needles in the upper hole, and we are going to try the lower tomorrow again. Hopefully it goes well.


Thursday, November 18, 2010

I have touchably soft skin

I have touchably soft skin. The nurses say I have really soft skin, that this is why it is so sensitive to all the tape and needles. The end goal of giving myself the needles is that I will be able to use dull needles at home. I keep giving myself the needles in the exact same spot and the same angle it is supposed to develop a track for the dull needle to follow.

Every few days we try a dull needle. So far even though I have two obvious needle holes in my arm the dull needle just will not puncture my vein. So while my skin is touchably soft like warm butter on a babies bottom, my veins are much thicker.

Today we tried the dull needles again, and again they did not puncture the vein. There is not issue getting them through my skin and arm meat, but the vein just is still too strong. The point of the dull needles is that when I come home I will be sleeping with the needles in my arm, and it can be dangerous to do so with the sharps. This was illustrated to me today.

As it has been doing the last few weeks my blood pressure dropped near the end of my treatment. As I think I've mentioned before my body simply is not used to the faster conventional treatments. The fluid I have built up doesn't move fast enough so I end up too dry, and then my BP crashes.

It did this today, one of the counter measures to this is to lower my head beneath my legs so that my blood goes to me head and chest. We did this today while I was still connected. While moving about though my arterial needle slipped out of place puncturing the vein. The arterial is the return line so when it went out of place I had 300ml/m of blood fill my upper arm. The machine stopped quickly when it sensed a pressure increase but it still hurt like hell.


Wednesday, November 17, 2010

Back to Dialysis training today

Well it was back to learning how to stick huge needles in my arm today. Yesterday morning I thought I wouldn't have to do that anymore, turns out I was wrong. I am getting better at it, and have hit my vein every time for the past week. I would just rather not have to do it. The nurses were obviously upset for me, when I called them on the way down Robie street to tell them I wasn't going to be there yesterday you would have thought they won the lottery. When I called them after finding out the bad news to schedule coming in today it was the complete opposite reaction.

While talking it over with them it turns out this has only happened to 1 other person that they work with, and they said they are doing "good" now. Obviously they are not able to go into details of another patient, but I took good to mean they have not gotten a Kidney. While it does certainly really suck that yesterday did not work out for me, it does give me an indication of my position on the list.

These past 16 months I've talked to many people have been on dialysis for years, like double digit years and I just and I was simply dreading that. Even though I had been told 2 - 3 years is the average, it seems if something is going to go wrong, it goes wrong with me. I have a whole list of things that have happened that I was told almost never happen, but did to me. Yesterday is just another item on that list.So hopefully my next call will come sooner than 16 months.

I also found out while down there that they have done 90 transplants in the last year. That is significantly more than I had thought they did per year. All this time I thought they only did maybe 1 per month, which is why I was dreading the wait on the list.


Tuesday, November 16, 2010

The Play by Play

Early this morning, November 16th 2010 at around 2:45am I was called to go to the VG hospital in Halifax. A kidney became available that was thought to be a match to me. This is a breakdown of what happened, and why I ended up coming home within a couple of hours of arriving in Halifax.

2:45am - The New Brunswick Transplant coordinators call my home. My father answered the phone just as I was waking up from hearing the phone ringing. I was still drowsy but I heard him coming up the stairs talking to somebody on the phone about me, and I knew what the call was.

I take the call and get the information needed. I need to go to the VG hospital in Halifax, the Dickson building 6B. The ask how soon I can be there, I say it will take an hour to get organized here, another 5 in travel time. A time of 8:30am in thrown out and I say thats fine.

I tweeted "Holly Shit going to Halifax for Kidney" to which I quickly as a number of congratulatory replies.

I have a shower and pack my bags. I included clothing and charging cables for my iphone and DSLR. I plan on documenting my trip and post transplant. I also sync a few more movies to my iphone, I consider bringing my laptop but decided against it.

3:30am, I'm pulling out of my driveway, from call to go to actually going takes only 45mins even though I didn't have anything prepared to go. I think thats pretty good time.

My mother is traveling with me, we make 3 short stops for her to stretch, I use them to tweet my current location.

6:30: we get to Truro. My mother took over driving. I had only had 1 hour of sleep and while I could have gone all the way, I wanted some time to just chill. Truro is almost exactly 1 hour from Halifax.

7:30am: We reach Halifax, right at rush hour traffic, it takes another 30 mins to reach the hospital.

8am: We get to the hospital. It takes no more than 5 mins to reach the proper floor. I went to the nurses station and introduced myself. I was immediately taken to the side by a doctor and into a private room.

I knew there was something wrong.

I was told that they did the final antibody testing between my blood and the kidney. The results came back positive. I wasn't sure what that meant so I let him just continue.

What it meant was that there was no way this Kidney was going to be able to live in my body. My body had antibodies that would attack and kill this kidney, it would never have lasted, possible not even work the moment it was put in.

I am told by the transplant coordinator there that the virtual testing that they do in the computer showed the antibodies as being negative, but once they did the real test, just an hour ago, it was positive. I am told that in the two years of them doing the virtual simulated testing that this is possibly the only time they have ever seen a different result than the actual testing.

I think to myself that this is simply one more thing I can ad to my list where something went wrong wrong for me that almost never happens ever.

She continues to say that this is not really a bad thing, that its good it was caught and tries to be positive and make me feel better. I just sit politely, but really just want to get the hell out of there. Nothing at all to do with her, I just simply don't want to be there at that moment.

My mother and I leave, spend a hour looking for a Smitty's which doesn't seem to exist, end up going to McDonalds for breakfast, make a quick stop at Home Outfitters (I wanted to check out the cooking supplies) and then drive the 4 and a half hours back home.

I guess a positive thing to take from this is that I'm higher on the list than I thought, that I know next kidney that comes up that is compatible with me, I'll be right there, that in the off chance that there is another person on the list that has the same blood type and tissue typing as I do, I am ahead.


Driving to Halifax

I got the call, well about 4 hours ago now. My mother came with me, we just switched off driving duty. We are about 1 hour out from Halifax, where I will be going to the VG. I have to admit that I'm nervous in regards to the procedure but excited too.

Sent from my iPhone 4

Holly shit, I'm 10 mins out from being on the road

Got the call 20 mins ago, packing to go, t minus 10 mins to launch

Thursday, November 11, 2010

I had a shower!

I had a shower today, and it was glorious! The water beating off my bare chest, it felt like feathers caressing the soles of my feet. It felt great to finally be able to get in the shower. It's been 16 months. I'm not even really sore anymore from having the line removed. There is sort of like an indentation now above my right nipple. Its like a small innie belly button right there on my chest. I sort of hope it doesn't go away, it's kind of funny and cute, like Liz Lemon.


Wednesday, November 10, 2010

It takes a man to open a Jar, but a woman to get it started.

Yesterday I had my central line removed. Now for the first time in 16 months I don't have a tube coming out of my chest. I was excited about it coming out, not so excited about it being removed. It's a pretty simple procedure, I didn't even need to take my chucks or pants off.

I was laying on a gurney, they didn't even need my on the real operating table. I ask about how these things normally go. The nice lady said that normally they come right out, and everything goes smoothly. She said sometimes they are a little grown in around the bulge that holds them in place and take a little extra yank to get it out. I told her that if anything is going to go wrong, it's going to be with me. This has been my experience you see, nothing goes smoothly, if something can go wrong, it's going to go wrong with me. She said that I was being ridiculous, I said just watch.

The nurse cleaned the area, she then starting pulling on it, she pulled it and pulled some more, it just wasn't coming out. There was one nurse to my left holding me down, while the other pulled, each time my right side would rise from the table. I wasn't raising it myself, nope it was the line pulling my up as it was yanked on. I have to say it wasn't the best feeling having her pull on it. So she told me she was going to have to get the doctor to do it, because he was a strong man and will be able to pull it better than her.

While waiting for the doc to come, she likened the situation to when a woman need a jar opened. She tries her darnedest to get it open, but just can't do it. She gets her husband to come and open the jar, and of course it opens right away because it was already loosened by her. While I was the jar, and the tube in my chest was the lid. The doctor came in, and after giving it a good once over, just gave it on good pull. Then *pop* it came out.

Thats is the sound it made. *Pop* put your index finger in your cheek, wrap your lips right around it and bend it forward and out. It makes a *Pop*. Thats the sound of the line coming out.


Thursday, November 4, 2010

I stick them in, and then 4 hours later I pull them out

Yup, I'm now to the point where I'm sticking my own needles in pretty much without assistance and taping the down, hooking the tubes from the needles up to the machine. All this with just 1 hand. 4 hours later I'm pulling them out myself and not making all that much of a mess. The needles as you may remember from my picture a few weeks ago are pretty big, 16 Gage to be exact.

Right now I'm still using sharp needles but the goal is to keep putting them in the exact same position so that I can us dull needles. I will have 2 holes in my arm, the idea being that eventually it would be similar to putting an earring in, I don't have an piercing so I don't really know what that is like, but right now it is somewhat painful. I just grit my teeth and just keep pushing the needle in until I'm in the vain, then level it off and finish inserting it all the way.

My blood pressure has still be dropping at the end, today it got as low as mid 50s over mid 40s. I was already disconnected so the nurses considered putting my on an IV drip to give me fluid to bring it up. I didn't end up having to do that but they were treating it pretty seriously, I felt ok though so I was just relaxing.

Tuesday next week I will be getting the line in my chest out. After 16 months of having to sponge bath I will finally be able to have a proper shower next week, and simply be more comfortable not having a tube coming out of my chest, I can't wait. It was originally scheduled to come out this past Wednesday but there was some concern that it was too soon and postponed a little less than a week.

I'm still just completely beet so for the next little while there may only be weekly updates, I'll try to keep up though.


Thursday, October 28, 2010

I'm Making progress

Today was the 3rd day in a row that I was able to get the needle right in the vein. Also I was able to remove my needle at the end of treatment with only a minimum of blood spurtish. My days have become getting up around 7am and driving to the hospital. Sticking myself with a huge needle and then doing a hard 4-5 hours of dialysis. My body is not used to this. Right after getting off I don't feel so bad, but within a few hours I'm just completely beat. Because of this it's been difficult to write updates here. The lack of sleep and being drained as turned my mind to mush.

I get home and all I want to do is lay in front of my TV and watch my stories. It's even difficult to pick up my PS3 controller to play some Fallout: New Vegas. I need to watch my fluid intake because I'm doing less dialysis then I was when doing it at home. I mostly drink tea through out the day and stay away from other fluids. I figure tea being a diarrhetic it may come out in different ways keeping my fluidic weight down. I really have no idea how I did this before when I went to the hospital 3 days a week and then went to work. I just generally feel tired almost 100% of the time.

The nurses at the unit seem to think that I'm doing really good and making great progress. At first I was starting to get a little annoyed with myself that for the first week sticking the needle in I couldn't hit my vein. I guess I was just being too hard on myself because everybody else thinks I'm doing really well. The first day I got my needle in I ran into one of the dialysis nurses from over where the in hospital patients go and she had heard about me being able to do it. I guess my nurses were bragging earlier in the day while I was hooked up to the other units nurses.


Monday, October 25, 2010

At least I don't need to use sea urchin spines

Dr Jack Shephard (of lost):

"Veins are like a wet noodle. First you have to find one. Then you have to pierce it with a hollow needle."

After a week of trying today I was finally able to get the needle in my vain and have it stay there. In my opinion even better than the nurses have been doing because I didn't even feel it at all. They said there would be some give but I didn't even notice. I didn't know it was in until I saw the blood coming up the line.

This time I wasn't startled and the needle stayed in. What a relief. It's diffidently not as easy as the nurses at the blood clinic make it look, just finding the vein and then stabbing effortlessly in, oh no sir they move and wiggle and just as the quote above suggests, veins are like wet noodles. Luckily though I have needles that are are bit more advanced than a sea urchin's spine.

The next leap of course is repeating what I have now done, but also removing the needle on my own. Given that it is directly in a large vein with LOTS of blood coursing through it every second, pressure needs to be applied to it almost immediately or else there shall be a geyser of blood coming out of my arm.

Pressure needs to be held to each hole after removing the needle for at least 10 minutes. They also cannot be removed at the same time. I remove one, hold it for 10 minutes, and then remove the other and repeat the 10 minutes. The problem lays in that my fistula is in my upper arm so I can only reach it with one hand, so while the nurses can use both hands, one to remove and one to apply pressure, I can only use one.

We'll see how this goes tomorrow


Sunday, October 24, 2010

24: Staring a baby Owen in a plexiglass crib

Today I'm introducing what I hope to be a continuing series of guest blog entries. This one comes from my mother. I didn't edit the entry in any way other than to ad the introduction, the title and post labels.

When Owen was a baby, probably 1 or 2 years old, doing a 24 hour urine test was done in a most interesting way. The hospital had a crib that instead of having bars on the side, was made of plexiglass. All four sides were clear and there was a cage type cover on the top (to keep him from crawling out!).

Owen was then put in this crib, naked, and left in there for 24 hours. The bottom of the crib had a slight slant to it down to a funnel which led to a jug underneath the crib. This way, any pee that might happen in that time would run into the jug so they could measure it. He could have toys as long they were not absorbent in any way and he could not have any blankets.

We were able to wander the floor with it though, so we would wheel the crib with a naked Owen in it to the playroom, out to the phones, pretty well anywhere we wanted to go. Owen didn’t like the crib much and he would get pretty rank by the end of the 24 hours. This was done to him probably every time we went to the hospital. As soon as he was able to tell us when he had to pee, they stopped using the crib.

Owen's Mom

Saturday, October 23, 2010

Almost a week without any updates

Well its been almost a week now without one update. A lot has happened this last week, and I simply have been just too run down after my what ends up being full days at the hospital. I get home and I just want to lay on the couch and do nothing. One night I even went to bed at 5:30pm and slept pretty much right until 7am the next morning. The original plan was that I was going to go to the hospital in the morning and then work in the afternoon. I was convinced this was a bad idea and now I'm glad I was steered in the right direction. I would never have been able to do it. I'm be completely exhausted.

I started giving myself the huge needles the beginning of the week. Then gave them to myself the rest of the week. Each time I missed the fistula though. I did hit it once and got the needle in, but the give of the wall and it sliding in startled me so much that I jerked back and ended up pulling the needle out. A gauze had to be quickly applied to the hole as the blood was just rushing out.

Hopefully this week I will be able to needle myself properly and then later in the week or by the next week the line in my chest will be removed. I'm not a huge fan of needling myself, in actuality I really hate it. It simply goes against all my innate instincts to stick a huge pencil sized needle in my own arm. I keep telling myself though that it will be all worth it once the line is out of my chest and I'll be able to have actual showers.

Coming next week will hopefully be a pretty big announcement and I maybe having a semi regular guest blogger. Stay tuned, hit the follow button and share the wealth that is this blog.


Monday, October 18, 2010

I've been a negative Nancy

The last few weeks I've been pretty negative. I've just simply been really angry, pissed off, and generally down about my current predicament. It seems like just in the last few weeks nothing has been going my way in terms of my Dialysis goes, plus even having to do the dialysis in the first place really sucks too. This post I'm going to force myself to be positive in terms of being able to do in home dialysis instead of going to the center. This will be in point form, it's just easier than formating it into paragraphs and I'm feeling lazy. Suck it up, I can be lazy I'm on dialysis, you're not.

1.) The big positive for me is that when I am able to do it at home again I wont have to get up super early on cold winder days to drive to the hospital. This will be especially good when it starts to snow and blizzard in the morning, I'll still be worm and in bed.

2.) I've been able to get off almost all of my medication. Right now I'm only I 2 pills, and it would be my educated guess that by the end of next week I will only be on 1 pill. That is actually fewer pills that I have EVER been on my whole life. As easy as it is to take pills for me, it's still just 1 more thing that I need to do that isn't part of a normal 27 year olds day.

3.) I've lost 50lbs, (but gained 10 back) I went from a size 38 pant down to 34, my face has slimmed down a crazy amount and I personally think I look better than ever.

4.) My diet isn't as restricted, in fact I need to ad potassium to my dialysis because otherwise it would be too low. My big potassium kryptonite is french fries, I love them, and now I can eat all I want.

Thats all I've got, but four is pretty good.


Friday, October 15, 2010

Six hours of dialysis awaits me today

6 hours. 6 hours sitting in the same position connected to a machine by tubes to both sides of my body. Fistula being used on my left arm to take blood. Central line in my chest being used to return the blood. Right arm being used for blood pressure cuff that will be inflating every 30 minutes. All while sitting in what to somebody looking at would seem to be a comfortable chair. It's not. This will be my next 6 hours. I'm going to try and sleep.


Sent from my iPhone 4

Thursday, October 14, 2010

Just call me Crashy McCrashy Crash

Yup, my blood pressure dropped again, after only 2 hours of being connected it went down to 77/22. They did everything they could, stopped the fluid removal, gave me saline to replaced the fluid that came off and nothing would work. My blood pressure just would not go up.

The only thing that worked was to take me off early. So now I sit here waiting to be able to leave, but I can until my BP is back at a reasonable level. Just waiting the needle taken out of my arm but the venous line still attached in case I need fluid.

For the future though my medication has been dropped again, leaving only 2 pills I take now. Much lower than the previous 10 twice a day. I guess that can be slotted in the win column.


Sent from my iPhone 4

New dialysis machines

I just found out that NB just approved use of a new in home dialysis machine, dubbed the 5008k. The hospital doesn't have any yet and I'm guessing it will probably be a year or more until they do but I've asked if I could get one when they do. They said I'd be the first to get one. I didn't get that is writing though.

Apparently primary selling point to the new machine is that instead of liquid acids and bicarbonate it uses all powders which would save a huge amount of space.

Unfortunitly it doesn't seem any of the advanced features I had wanted from my previous post will be included.

Here's hoping I have a slightly used type O+ kidney by the time they are rolling these out anyway.


Sent from my iPhone 4

Wednesday, October 13, 2010

Another day another Dialysis treatment

Well I'm back at the hospital. Currently hooked up with both a needle in my arm and a tube to one line in my chest. They used what is called a Teflon needle today. Anybody who has ever had an I.v would be familiar with a needle like this.

The way it works is once the needle is inserted the needle part slides put leaving a plastic sheath in the artery. This is flexible to I have more range of motion and there is no chance of moving my arm the wrong way and having the very sharp metal needle puncture the rear of the artery.


Sent from my iPhone 4

Tuesday, October 12, 2010

Home @ 4pm

I was home around 4pm today. I was beat. It took a few tries to get my arm needled, and now it really really hurts. It's pretty swollen at the moment. I was told I would be going in everyday this week. Once again I had to let work know that I'll be out. I don't really have a lot more to say, it was a shitty day. So here is a video of me having a huge needle stuck in my arm. Please note, this is #2, the other didn't get in right, thats what the gloved hand is holding, the hole into my artery that would spray blood like a lawn sprinkler if she let go. The orange is Providone-iodine, its a sterilizing solution.


Back to the Hospital

It's back to the Hospital today. I'm not sure what the plan is at the moment. I wont know until I get there. Two options are that they will be replacing my line which means some minor surgery, or they will be hooking my up with my arm. I just wont know until I arrive there and they tell me what is going on. I'll try to ad updates through out the day but if my arm is being used that will mean I only have 1 arm to type of my iphone with.


Monday, October 11, 2010

Thanksgiving at the Hospital

Well I spent most of the day yesterday at the Hospital, I didn't get home until about 7:45pm, which I guess is about the same time I would have been getting home from work anyway but thats not really the point. This is the 2nd Thanksgiving in a row that I have spent a lot of it in the hospital. Thanksgiving last year I was having dinner at the hospital in the palliative care unit where my Grandfather ( we called him "P") was resting. I guess resting would be the best word, he wasn't really being treated, the palliative care unit is where patients who are close to the end are sent to be kept comfortable.

At that time I was still going to the unit for dialysis, I remember a day or so before going up to see him while he was still talking some. The last thing I remember him saying to me is to never give up. That it was his time because he was old and he had lived life, but that I was still young and he didn't want me to give him, to keep fighting. He was sorry I had to go through this but to just not give up. This has really stuck with me, but at times it is difficult and tiring to keep doing what I'm doing. I have to push myself to not let him down to not just give up to stay on top of things and not let this drag me down like it has the last few weeks.

I'm trying to see the light at the end of the tunnel, my arm is going to start being used instead of my line. This is because of the last few weeks, my line just doesn't work anymore, they say it's probably because fibers have simply grown over the end over the last 4 months. The positive to this negative is that I will have to start using my arm, and the line in my chest will be removed. I'll be able to shower again instead of sponge bath, even swim if I want. Overall this is a good move forward.

I'm not going to let you down P

Sunday, October 10, 2010

Bored out of my mind

I'd rather be doing anything else right now. I'll either be starting training to stab myself with huge frickin needles Tuesday or having surgery to have my line replaced. Either way Tuesday is going to blow.


Sent from my iPhone 4

Back at the hospital

I'm back at the hospital in the uncomfortable chair with a huge needle coming out of my arm and a tube going to my line to return my blood. I will be here for the next 6 hours. Yay me.


Sent from my iPhone 4

Waiting waiting waiting

It's now the morning, I wasn't able to go on at all last night. The on call dialysis nurse wanted me to page her in the morning when I got on to find out what I need to do now. I've done that and am now waiting a response. I'm not up all that much, 4.9kg over what they consider to be my dry weight but I still do feel swollen.

I just received the call from the nurse, she wanted to know how much I was up. I let her know, she asked if I was short of breath. I said no, but that I am coughing a bit. She is going to contact one of my doctors and then call me back again with what I will need to do. I'm scheduled to work at 10:30am today, I'm hoping whatever they are planning will still allow me to get to work, but right now I'm half doubting it. I guess I will find out soon enough.

No callback yet, I need to leave for work. Possible updates to come.


$15,000 down my tube

Thats right, literally $15,000 down my tube this week. I've had 3 doses of cathflow, 2 of which were double doses, and my line still is not working properly. One dose, per line costs $1500 for each line, Monday I had a single dose per line, thats $3000. Thursday I had 2 doses per line, thats $6000, and again tonight after work I had 2 doses per line, another $6000. $3000 + $6000 + $6000 = $15,000. You'd think after that much drano my custom plumbing would work properly and I would actually be able to sleep. Wrong, I am still having issues and now can't even get it to work at all.

Just my luck too, it's a long weekend, I'm not really sure what the plan will be from here, I'm currently waiting on the on call nurse to call me back, I'm sure she must be tired of me calling her after midnight on her long weekend, or having to come back to down from her cottage to pour drano down my line. She doesn't show it though so thats cool. All the staff I deal with are pretty cool and I have no complaints about them, but I am sick of having to see them because of issues such as this.

I'm now just sitting here in bed testing blood speeds trying to force this to at least work a little bit and it just is not co-operating. At this point because of the long weekend I can't even guess what the next step will be. I'm still holding a lot of extra fluid that needs to come off, plus there is the build up of the chemicals that the kidneys are supposed to filter but I need to rely on a tube which also isn't working. Basically at the moment I'm boned.


Saturday, October 9, 2010

This is why I'm Angry

This is what I have listened to all night long for the last week instead of sleeping.

You would be angry and irritable too.


Thursday, October 7, 2010

I'm tired

I was at the hospital all day today, it took two tries to get my line going again. I was getting nervous that it was going to have to be replaced again. I'm getting so tired of this, I just want to be able to go to bed when I want and wake up when I want. I'm tired of my life being dictated by a machine, or I just want it to work. I was so run down after this afternoon, I didn't get home until 5pm and then I was supposed to go on again tonight just 6 hours after coming off earlier.

I had to call and just check to see if it was a big deal to not be connected. I'm a grown man that needs to ask permission if he should do a life saving treatment. I was told it was ok to not go on, I probably wouldn't have anyway. I'm just completely beet right now, and I have such a splitting head ache. Everyday I hope to get that one life changing call, and yet after a year and 6 months I am still waiting, that is all I do it seems is wait.


Wednesday, October 6, 2010

Dialysis is fucking clown shoes!

Fuck fuck fuck, fuck fucking dialysis. Sometimes you just need to wig the fuck out, and thats what I'm doing. The last 3 weeks have been the absolute worst two weeks of my year and a half on dialysis. I fucking hate this, dialysis fucking sucks once again tonight, the 2nd time in a week my line pressures have been shit. I have to go to the unit tomorrow and because I had such great time in F'ton yesterday and ate and drank more than I should have I really really need a treatment.

Don't get me wrong, I don't regret going to Fredericton yesterday, I regret having to do fucking dialysis. This is such fucking bullshit if 2 years rolls around and I don't have a new kidney, I don't fucking know what I'm going to do, I'm going to crack, I'm sick of this shit. People bitch and complain about having a little cold or flu or whatever the fuck else, well you know what? Give me your goddamn kidneys and you go on dialysis, then see how bad your little pussy cold was.

I'm sick if this, I have never ever been so frustrated in my life. Going on home dialysis was supposed to me I missed less work, well it sure as shit hasn't worked out that way lately. All the videos and shit they should you before you go on dialysis shows people being active and happy and oh wow dialysis is so awesome its just like being normal. It's all a fucking lie, dialysis is not great, it's the worst time ever. People say the US needs to capture Osama Bin laden. You know what? I say let him hang out in his cave on dialysis, there isn't any punishment that the US or Texas offers that is worse than it.

I didn't bother spelling checking this because I simple don't give a fuck right now


Monday, October 4, 2010

15 Years ago today

9am Oct4th 1995 I was going under the knife for a minimum of 5 hours to have my fathers kidney removed from him, and put into me. I don't remember being all that nervous the night before, but I do remember that I was given medication to help me relax. I'm sure because of it that is why I slept. In the morning to get to the OR I was taken down by gurney which is basically a stretcher.

Between my father and I, I'd say I had it easy. In order for a kidney to be removed, at least back then the rib above it had to be cut and removed. All that I had to do was have an incision made from just above my pelvic bone down to slightly above my crotch. There was no bone cutting. I don't remember a whole lot for the few hours after waking up, I was in the ICU and that really it.

After being moved from the ICU I was taken to what would be room for the next few weeks. It was right in front of the nurses station and because my immune system was being suppressed so much, great caution was taken. I was in isolation. This means anybody that came into my room would have to wear a mask and gown to not transmit any germs to me.

So now hopefully in the next year or so I'll get a call and I will get to go through the above again. Here is hoping for sooner rather than later.


Sunday, October 3, 2010

I dress myself now

I used to get dressed by the nurses at the unit, now once a week a just do it myself.

I had to do my dressing tonight, I do it atleast once a week. I do it right before setting up my machine. It ads about 30-45 minutes to setup. It can be really awkward to do, having to place a thin bandage in a pretty specific area on my chest. It's one of those things that it's a pain in the ass to do because it just ads more time to setting up everything, but its also something that I like doing when I'm doing it because it feels great to get the old one off and clean the area. The skin is very sensitive undernieth the bandage, after all the only air it has gotten for the last year and a half is the 1 hour a week when the bandage gets changed.

I use a combination of providone-iodine and sterile saline to clean the area. It has to be sterile so I wear a medical mask and gloves. I use the tweezers provided in a sterile dressing kit to wipe the area down with sterile gauze soaked in either the providone to sterilize the area or saline to clean the providone off.

The dressing is made up of two halfs, the lower half is a more tradtional stretcy but this bandage material. The upper part of a really thin plastic. Of course both halves have adhesive. The skin is especially sensitive on the lower half where it doesn't get any light either. Just imagine your post sensitive skin, and thats what that small area on my chest feels like.


Saturday, October 2, 2010

Emergency take off

Last night I had to get myself off quicker that I ever had before. I woke up and I felt that my bp was low, but that wasn't the issue. That was just contributing to my problem. My real problem was I was both sick to my stomach and felt something rumbling at the other end. I needed to get off right now, and it needed to be done fast or else I was never going to be able to sleep in my bed ever again. The whole mattress would need to be replaced.

I started to work. Every moment was one more that I had to clench second by second, grumble after grumble. There were moments that I thought I was done. I finally, after what seemed like an eternity was able to get disconnected I bolted still with my gloves and mask on to the washroom. I flip the lid up, I hit it too hard it bounces back down, I lift it again and sit down just in time. I am this close to passing out, but am able to do what I need to do. This was the most panicked I've been so far, I was sweating.


Sent from my iPhone 4

Thursday, September 30, 2010

Frustrated Incorporated

The 4 months that I was in the IWK my music listening basically came to a stand still. I didn't have Much Music there, I wasn't really going to school, there was a teacher that would teach anything my school sent, but the school never really got around to sending anything. Because of that I was basically isolated from any new music being released. That was ok by me. It kind of sucked though, when I got back everybody was talking about these new bands like Oasis, and I was just like what is morning glory? Is it a prequel to afternoon delight? Ronald Reagan, George Bush and Jimmy Carter formed a band? Why do they like peaches so much? For me it was still all about the grunge, Nirvana, Peal Jam, The Offspring and some Weird Al was what I was listening too.

I think there was Soul Asylum too but it wasn't released until 1995, so maybe I've been getting my dates wrong and my transplant wasn't until 1995. I'm sure my Grandparents came up and I played Misery. My parents got mad at me for doing it because it made my Grandfather think I was suffering. I also thought I remember some White Zombie AstroCreep 2000 being played too.

I know I remember one night after my mom went home that my Blood Pressure was high. When it was high the on call doctor would normally get me to take Adalat, which is a drug that lowers your BP fairly quickly, I really didn't like taking it. That night I was refusing to take it, I was just sitting in my room, probably almost in tears just listening to Peal Jam's Ten. The Resident came in and tried to trick me into doing what he wanted by talking about how he was into Pearl Jam too and blah blah blah trying to seem cool. I thought I was smart and didn't fall for it obviously. I wanted to talk to my mom, and the only person that was going to get me to take it was her. I don't remember the end result, but I'm sure I probably ended up taking the medication.


I just can't win

Back in the first half of '94 when I was 11 I still enjoyed having baths, I would gather my Hot-Wheels and have races and wars all around the side of the bath tub. When April came along and I had to go on Peritoneal Dialysis (PD) I was told that I couldn't get the PD catheter wet. The way PD works is there is a permanent catheter is inserted into your abdomen and a fluid is then drained into you. I'm not sure what the fluid is, but through the magic of osmosis will use your own peritoneum membrane to filter all the stuff that your kidneys would normally filter out. In the morning all that stuff comes out when the fluid is drained in the morning.

I was told before starting PD that I would have to keep the area away from being submerged in water, and told that I would be able to shower. At the time I wasn't all that happy about that, I didn't want to shower, I liked baths, but it's what I had to do. I may not have always been that careful, I remember playing near the lake near my house and almost falling in, I didn't though so everything was good. Before starting Hemo Dialysis this time around I wasn't told much, and being the know-it-all that I am I assumed that the same rules applied, no baths, but I could still shower.

It was only after I had the line put in that I learned that, nope I now couldn't shower, I would have to sponge bathe, I was pissed. If I had been told prior I may have made a different decision as to what type of Dialysis I would be doing, because now unlike when I was 11 I would prefer to have showers over baths. My sponge bathing time is hopefully coming to and end soon with the use of the fistula in my arm. Once that starts being used the tube in my chest will be removed and I will be able to shower again. Until then I'm stuck sponge bathing myself, I don't even have the benefit of a sexy nurse.


Wednesday, September 29, 2010

If the Blob only had Dialysis

Obviously the Blob was only the Blob because he had a lot of extra fluid weight from bum kidneys. All he wanted was a good ole treatment of dialysis to shed some of that fluid.

After my issues last week, and because it I wasn't getting proper treatments I'm walking around with about an extra 10 - 12kg of fluid weight. Thats really not the great of thing but my doctors said that as long as it's not permanent it's ok because I'm young and have a strong ticker. Its really uncomfortable though, I don't really feel bad, just nothing fits right, my calfs feel tight in my jeans, feet feel odd. It's like I'm having a baby and have baby weight, but instead of taking 9 months to loose it, it will be a week or so. It will come off with my treatments at home, its going to take a few however.

This is probably the first time I'm actually wanted to do Dialysis since I started 1 and a half years ago. Don't get me wrong, I still don't look forward to doing it, but I do look forward to shedding 4kg of fluid in 7 hours. Each day I'm on I will get closer and closer to my dry weight and start feeling right again. It will probably take 5 or 6 days to get there. Drop 4kg overnight during my treatment, gain 2 of that back during the day then repeat repeat. It's a real back and forth.


Tuesday, September 28, 2010

Not your run of the mill delivery

I always feel really useless when my supply deliveries come. Like today, there were 12 16kg boxes that had to be brought into my house and up the stairs. Thats 192kg, that 2.5 of me!. Today the delivery guy was smaller than me. Because I'm not supposed to lift things that heavy I had to just stand there and watch, I couldn't do anything. Sure, I have a perfectly valid reason for not helping out, but really is the delivery guy going to know that I'm the one the delivery is for, that I'm the one on dialysis. To just anybody looking at me I think I look pretty healthy, save for a few extra pounds. What can I do though, just say "yo I can't help because I'm on dialysis". I suppose I could, obviously he is going to know somebody in the house is, but it just seems like an bizarre thing to say to a total stranger.

I also wonder what is the tipping situation for something like that, hell what is the tipping situation for anybody that comes out to my house to either make a delivery or check on the equipment. They guy today is doing a lot of work, those 16kg is not light, so do I tip him? He is expecting a tip, there isn't any awkward moment after I sign, he just leaves. I wonder if a tip for something like that could be a tax write off where it's a medical thing? Also the biomed people that come out. Today I had a guy out because my filtration tanks were leaking, they needed some caps and O-rings replaced. It doesn't seem like it would be all that hard to do, but it's not something I could do on my own, so do I tip him? Maybe I should start offering pie or something, that will negate any expected tip.

Big Foot and the muscle machines

When I was growing up, I was a huge fan of Monster trucks, this was when they were really just trucks with huge fraking tires. I even had a bunch of Matchbox monster trucks. I don't really remember what any of the trucks names were anymore, just Big Foot of course. I do remember though that whenever I went to Halifax my parents would give me one before going to the hospital. I guess they were probably hoping I wouldn't remember the things like catheters being shoved up my wee wee if I got a cool toy before hand. Guess that didn't work out, I simply just remember both. Catheters were the worst part of going to the IWK, and Matchbox monster trucks were the best.

They were always up front with me though about the procedures I was going to have, nothing was ever a surprise, and that is probably why I like to watch when I'm awake whenever I get things done now. Whenever I give blood the nurse always says take a deep breath and look away, well I never do, I focus right where she is sticking the needle, I simple like to know the exact moment it's going to happen. Same thing when I was getting the fistula done in my arm, they don't out you to sleep for that, they just drug you up a whole lot, so I the beginning of the procedure I was still awake, and I watched the doctor cut my arm open. I find looking away worse, because I don't really know when it's coming and I need to rely on somebody else to tell me, if I see it for myself I'm much more relaxed.

Monday, September 27, 2010

Mission Impossible

The thing that makes me the most nervous about doing my own Dialysis at home is, what happens if there is a power outage while I'm connected? Like I've said previously there is no backup power, I actually need to pump my blood back to myself manually, with a tunny plastic lever that snaps into the machine. I then have to hand pump about 100ml of blood back to me. I have been trained to do this, and during training and did do it once before.

There is however a huge difference between training to do this in a brightly lit room and waking up in the middle of the night with only emergency lighting and being conscious enough to do it. To make matters even worse, there is actually a time limit to do this. 10 minutes. Anything over 10 minutes and my blood will begin to coagulate because it isn't moving. Great! So not only do I have to hand crank the pump to give me back my blood, I'm also doing it under emergency lighting and now I have a ticking clock. I'd have to be Jack Bauer to not sweat under those conditions.

My plastic hand crank I would use to manually pump my blood

I have had to take myself off in an emergency situation before though, not just in training, actually in a real honest to goodness situation. About a month or so into doing my treatments at home I had been on for a few hours, and I had been sleeping when I woke up. As soon as I woke up I knew there was an issue and I was going to have to take myself off. It was another situation that I dread but non the less knew would happen someday and I'm sure it will happen again. I had to use the loo.

Since I do not urinate I'll let the fine readers put together what needed to be done. It was time for business. I did an emergency take off, but connected my lines to the medication ports so that as long as I was back in 10 minutes I could connect back up. I grabbed my iPod Touch and set the timer to 8 minutes. It was close, I was just finishing up at my timer went off saying I had 2 minutes left, I got back to my room, setup my sterile area, which takes another minutes or so, I was just connecting when the time went past 10 minutes, and I turned the pump back on. I watched as my blood flowed naturally, I didn't see any issues. I had done the impossible.


The Aulac New Brunswick Big Stop

The best part of the 5 hour drive to Halifax was the Irving Big Stop in Aulac, New Brunswick. From my earliest years I remember stopping at the Big Stop for lunch and it was always fantastic. In my early years there was just one meal I would have, chicken fingers. I loved chicken fingers, and I still do love chicken fingers, they are probably one of my favorite meals. Later on as my tastes matured some I would order the "Chicken Burger Deluxe" I don't know how I still remember the actual menu name, but that was it. It was a breaded chicken breast on a bun with lettuce, tomato, mayo and bacon. It was always very tasty. Of course both came with a side of crinkle cut french fries, coleslaw and veggies. I would never eat the veggies or coleslaw, my parents and sometimes the waitress would hassle me about it. I still wouldn't eat the veggies but I have taken to mixing my Coleslaw in with the french fries.

Once we got to Halifax we would still need to eat that evening. I remember going various places, but the one that really sticks out as the one we would go to most was Swiss Chalet. Of course being at Swiss Chalet I would get a chicken dinner, probably a children's but I don't remember for sure. What I do remember is what I always liked to drink. Not being able to drink colas and always having 7up or Sprite, this drink was the main attraction at Swiss Chalet. It was the Shirley Temple. A Shirley Temple is a "Virgin Cocktail" that means it doesn't have alcohol. The way Swiss Chalet made their Shirley Temple was with Sprite or 7up mixed with Cherry Grenadine, ice, a straw and a fruit garnish. I'm sure I felt mature drinking a "big person drink".

I felt even more mature when I didn't spill my drink... One night while my family and I were having a nice dinner at the Halifax Swiss Chalet, this was before my transplant so early 90s later 80s my clumsy father spilled his drink. This however was not the end, he reached for a napkin, now my memory might be foggy, but as I remember this napkin was under my mother's drink. Thats right, he grabbed a napkin under another drink, and of course he then spilled that drink, at this point there were no napkins left, they had all been drenched, not from cleaning anything up, but from simply being in the line of fire while my father self destructed in a wave of cold refreshments. Lucky for us the table right beside us (probably the whole restaurant) had seen the horror that just unfolded and was kind enough to provide what napkins they had while the staff rushed to clean up I'm sure the largest mess a customer has ever caused.


Sunday, September 26, 2010

The Medium is the Message.

I need ideas, that's right, I'm pulling the audience in right now, I'm breaking the 4th wall and I need you to help me out. I want to make a video of myself setting up my dialysis machine. Not just any video though, I want it from my perspective. I don't have any sort of head mounted camera though, and my best camera to take such a video is my iPhone 4 camera. Now there is such a head mounting device for the 5th Gen iPod Nano, but I don't have a 5th Gen iPod nano, I just have my iPhone 4. The gist of this is that I need your ideas of a way to mount my iPhone 4 to my head. If there is already a mounting device and its not too costly send me that info, if you have some while schematic that you drew up send me that info, I need your ideas no matter how cockamamie they may be. You can leave them as a comment, or send me an email at thisoldkidney@gmail.com. I look forward to your ideas.

Now I see that you are now perplexed. You say that I've said previously that I planned on publishing what I write here in my memoirs, so how will I ever publish a video? Well the obvious answer is it would be an extra for the Blu-ray edition of the movie based on my memoirs where Tracy Morgan plays me. Look for it by 2015.


Saturday, September 25, 2010

Attack of the Killer Bacteria -- Part Six - The Conclusion

Over the past few days I've gone through my first semi emergency involving my at home dialysis. It all came crashing down Wednesday when I received a call at work from the unit saying they needed a follow up water sample right away. It now ended today when I got an email saying that my water passed the follow up testing and I could now resume my regularly scheduled treatments. It really opened my eyes to how much better doing dialysis at home is that having to go to the unit. While it does such having to plan out when I'm going to go to bed based on how long it take to get hooked up. It sure beats having to drive to the hospital to do it and then being completely exhausted from it.

I never did find out what actually caused the bacteria to show up. It could have been all kinds of things. From just being out of the fridge too long in transport, to possibly not being handled properly either by me, or by the lab technicians. Either way I guess it shows how seriously the team of Doctors, Nurses, Lab Techs, and Engineers take keeping me healthy and that makes be feel good. Right when there was a problem they were ready to give me a backup plan, to call me and get my ass in gear to help them fix the issue. At least somebody is on the ball.


Attack of the Killer Bacteria -- Part Five

Today was a long day, I was at the hospital for my Dialysis treatment at 8am to be hooked up and set to go by 8:30. Originally the treatment was going to last 4 hours, at the last minute however the staff made a change and decided to go longer. I ended up not being complete until around 2:30pm and then had to stay until my blood pressure (BP) was taken care of. I didn't actually get home until about 4:30pm, I had something to eat, and then passed out in bed. I didn't wake up until 10:30pm, and I will have to be up by 8:30am tomorrow to go to work.

The AV fistula in my arm was used again today, it worked well for the 2 hours then my Blood pressure began to bottom out. I experienced immense pain in my arm because of this. They opted to stop using it at that point and switch to the line in my chest for the rest of the treatment. It still didn't go all that smoothly and my BP was still too low at mid 60s over 30s. My arm however is really brused from the large needles, it doesn't look good at all.

They decided to discontinue any fluid removal and just focus on clearance (That's the bad stuff). They figure the reason for all the issues with treatments in the last 2 day is because my body is now just so used to the 7 hours I do at home. The 7 hours takes the fluid off much slower than the 4 hours and is easier on my body. Reducing that to 4 hours and going for the same amounts was just too much of a shock.My blood pressure medication has now been reduced so I'm hoping I wont have any other issues with low BP.

Tomorrow will be a normal day, I don't have to go back for a treatment, and hopefully I will have the results of the follow up water test by 7pm and the will be positive.. and by positive I mean good, and negative for any bacteria. If everything is good tomorrow it will being a conclusion to my "Attack of the Killer Bacteria" series. stay tuned for updates.


Friday, September 24, 2010

Bp was too low, needed O2, always time for apple facetime

Attack of the Killer Bacteria -- Part Four

Well I'm back at the hospital. I'm currently all hooked up for the next 5 hours. They also decided it would be a good idea to try and use my AV fistula again. This time I worked though! So I currently have not one but two of the needles from yesterday jacked into me. That's all the update for now. Type with one arm that is wrapped in a bp cuff is not easy

Sent from my iPhone 4

Thursday, September 23, 2010

Attack of the Killer Bacteria -- Part Three

I've been back home after doing my treatment at the unit for a while now. I'm still just super worn out though and tired. I've been on the in home hemo for about 6 months now and I guess I was just spoiled by that. I just don't know how to managed 3 days a week doing 4 hours and then going to work, I was just simply exhausted at the end today, I could barley stand. My blood pressure was 70/36 at one point. Hopefully tomorrow will be my last do that I have to go in and my whole water issue will be resolved Saturday. I'm told the final aspect of the tests will be complete by 6:30pm Saturday.

Speaking of killer Bacteria, lets switch gears and go to killer funny. 30 Rock returns to prime time tonight, with the always attractive Tina Fey. I recently read that Grizz, he is one of Tracy Jordan's body guards on the show was the recipient of a Kidney transplant over the summer. How cool is that, I have something in common with the Grizz. He got his transplant for a dude he didn't even know, just some cool cat that wanted to donate his Kidney to somebody in need. It wasn't a cadaver or anything, he just offered the organ transplant program in the States one of his Kidneys and the Grizz got it. Pretty cool if you ask me.

Read more about it @ people


Attack of the killer Bacteria -- Part Two

So I'm back to the hospital for my in centre treatment. Part of the test for bacteria came back. Good news! The bacteria dung levels are really low. So either there isn't as much Bacteria as the last test showed or the bacteria is constipated.

While here today the nurses decided to try using the AV fistula that I had created a few months ago. This involves using a large needle instead of just connecting two sets of tubes, the machine connects directly to me.

This is the needle that I'm going to have to stab myself with. For size comparison I've used a standard 3.5mm headphone jack

Sent from my iPhone 4

Attack of the killer Bacteria! -- Part One

A small diminished lab technician is on guard at the laboratory, when a strange sight is seen on the horizon... it's BACTERIA! Oh the humanity, what shall we ever do about their... shit?

That's right, to day I received an emergency call around 12 noon at work to tell me that my monthly water sample had failed because of bacteria being found. (not the call I was hoping for) What I didn't know about bacteria in the water is that it's not really the bacteria that is the problem, it's actually what they leave behind. Thats right, their dooty. The nurse that informed me of this was specific to say that what they leave behind is smaller than them. Well I should hope so, can you imagine a creature that leaves bowel movements bigger than it? That's insane!

I was told they would need a 2nd sample right away.  I proceeded to rush to the hospital to get a micro filter, and then run home, replace a total of 3 filters, the microfilter, and 2 diasafe filters. I then needed to run the machine for an hour, do a water sample and take that back to the hospital all before the lab closed at 4pm. I manager to get there just in time, 3:50pm, but I still wont have results back until Friday which means in centre treatments for tomorrow and Friday at the very least.

Work wise I had to leave early today, I've had to take the day off tomorrow because I'll be doing a long in centre treatment and Friday I now have to start 3 hours later, which means I end 3 hours later. They are understand but it still sucks. It may seem strange for somebody to not want to miss work but I honestly hate that I have to request special treatment because of a medical issue, I'd rather just be "normal" and not require any special considerations.

Maybe I'll do a 2nd update from the hospital when all hooked up.


Tuesday, September 21, 2010

The List

195.3      187.6      100/46 83      82/40 80

There is a surprisingly large number of items that are needed to perform a single treatment of dialysis. I've included a list, this list does not include any extras that I keep close just incase they are needed,  It's not exactly easy to move around once I am hooked up. These are simply the items that will be used for sure when hooking up. All the items except for a few are single use. I need to empty my large industrial size garbage can every 3 treatments, nothing but the 4 and 8 liter jugs is recycled. I also have a sharps container which I need to take to the Dialysis unit once a month and replace with another.

6 x 10cc Syringe
3 x 3cc Syringe
1 x 20cc Syringe
8 x 20 Gage needles
1 medical mask
3 x 2 pack of sterile 10cm x 10cm gauze
3 x 10cc Heparin bottles
12 x Chlorhexidine swabs
4 x Sterile towels
3 x Size 8 sterile golves
4.0l Naturalyte H-624 (Acid)
8.0l Bicarbonate
2 x 1l Saline bags
2 inch roll of tape
1 inch roll of tape
2 x Interlocking caps
Dialysis tubing
Saline bag tubing
F160nr Fresenius Dialysis filter
3 x scissor clamps
1 packet of Potassium additive
Vinegar for cleansing post treatment
Bleach for cleaning outside post treatment



Artsy After


Monday, September 20, 2010

What you want is what you get

197.8     189.2     106/55 78      86/49 76

What you want is what you get, this was the Mcdonald's slogan in 1994, when I was spending a lot of my time at the IWK in Halifax. In the spring of that year my parents and I were doing our training for peritoneal Dialysis. This was done on an out patient basis, I was not admitted to hospital at this time, there really was no need. Our home while there was the Ronald McDonald house. Sounds awesome huh? Living in Ronald Mcdonald's house, this absolutely has to be the most kick ass Mcdonalds in all the universe, it must have Mcdonalds room service, and your food is cooked none other than by the man himself, Grimace! Not so, there is no Mcdonalds in Ronald McDonald House.

Ronald McDonald house is a place for the parents of children in the IWK to stay that is less expensive than a hotel or even a motel. It has a kitchen, and laundry facilities. It's not too fancy but it certainly fits it's residents needs. It's walking distance from the IWK, along with Spring Garden road where there is local shopping, restaurants and entertainment. It's in a pretty good residential area that if you don't have a vehicle you can get to pretty much anything you'd want. It's along a bus route and of course there are also taxis. If you do have a vehicle there is limited parking in the back. It became a home away from home for a good part of my and my parents life in 1994. In the latter part of the year after my transplant I was obviously admitted into hospital so my mother was spending her evenings at Ronald McDondald house, while I was at the hospital. 

The normal stay length after a transplant at that time at the IWK was 3 months in hospital, because of other complications I ended up being there for 4 months. Because of the extra month I spent there in 1994 we spent Christmas at Ronald McDonald house, I'll leave that story for another time though.


Saturday, September 18, 2010

The iDialyspod

197.3     188.6     114/51 77     86/40 70

I entrust my life 5 nights a week to a 20,000 Dollar machine that uses a 10inch resistive touch screen and has a stuck pixel. The resolution on this screen is lower than the original iPod Touch, much lower than my iPhone 4. Did I mention it's resistive. To those who are not a complete geek like I, a resistive touch screen is one that you must apply pressure to in order for it to detect input. The other, and generally much better is a capacitive, these screens do not require pressure, they detect something touching it by detecting conductivity. I'm not sure of what OS it uses, but unless it's using something custom it could only be either a flavor of Linux or Windows CE/Embedded. No blue screens yet. The interface includes a "sleep" button which I can press when I want to sleep. No, it doesn't put me to sleep, it turns all the pixels on the screen black. Thats right, the pixels are still on, it doesn't actually turn the screen off, or even the side lighting (no back lighting) it turns them black and keeps the side lighting on. Again, 20,000 dollars and they can't figure out how to turn off a touch screen and have it wake up when being touched again?

There is no internet connectivity, which I was surprised about, I would think being able to constantly send my vitals to the dialysis unit would be a no brainer, but no, not even a a dial up modem. No USB ports either, it does have RS232 port though, it's used for programing it, so that is really it's only input besides the front control panel. It also doesn't have an actual power back up, nope no built in UPS and it cannot be plugged into one either. It does have a 9v battery -you know the kind of battery that goes in your alarm clock, that will alarm if the power goes out. I would then have to manually remove the battery to stop the alarm and then pump my blood back into me by hand. I guess it goes without saying that it has no multimedia features, no ipod dock to be found.

If I designed this thing the first think I would ad is connectivity, 3G at least, if not 4G, all the 802.11 standards, Gigabit ethernet, bluetooth, USB, USB, USB. I want to be able to plug a USB drive in this thing and download my treatment details, or connect a printer and print them, or simply send them over the internet. Higher resolution and larger capacitive touchscreen that when I say sleep, it actually turns off the backlighting (no side lighting here) and the pixels. I'd ad media functionality, if I'm going to be connected to this thing for 7 hours a day I want to be entertained that means the USB ports can be used for external storage. If a fridge can do it, this should be able too. Some sort of backup power, I don't want to have to manually pump my blood back to me, my mother's VCR had backup power. Some interface options, the current one is really drab. Thats it for now, maybe I'll send my suggestions for Fresenius see what they have too say.


Friday, September 17, 2010

Welcome to the suck pt 2

113/51 77     99/48 72

Things went well this morning, well as well as having to get up super early to go to the hospital to have your central line flushed can go. I am currently hooked up and pressures do seem to be good, although there is currently a strange vibration in the line. This would generally indicate a clot if pressures were higher but they are actually very good. It's an odd sensation, I guess the best way to describe it would be if you left your cell phone on it's lowest vibrate setting and set it on your chest when it received a call.

I hooked myself up earlier than usual tonight so that I could have a little bit longer to sleep after disconnecting in the morning before having to get to to go to work. I guess the worst part of having to do this 5 nights a week is that I can't go to bed when I want to. I have to plan my evening around what time I want to get up and the 7 hours that I'm connected. Plus it takes between an hour to and hour and a half for prep and to just get connected in the first place. Once the 7 hours go by its another hour or so to get disconnected and clean everything up. Thats 9 to 10 hours a day that I spend just doing this. Of course a little bit of that I'd be asleep anyway. It's still better than having to go to the hospital for 4 hours 3 days a week. I'll appreciate not having to leave the house so early once winter is in full swing.

This is how my evening went tonight.

20:30 - 20:45 Gathering my supplies
20:45 - 20:50 Water test for any residual chlorine in the machine
20:50 - 21:30 Setting up the machine
21:30 - 21:40 Connecting myself
21:40 - 4:50 Precious blood filtered by what looks like a computer from the 60s
4:50 - 5:00 Disconnecting
5:00 - 5:15 Gathering up the tubing to be thrown out
5:15 - 5:30 Acid clean
5:30 - 6:10 Heat clean @ 60C (I can sleep during this however)


Thursday, September 16, 2010

Welcome to the suck

My night did not go well. Arterial pressures would spike whether I ran my line straight or reversed. I have a feeling not many people will know what that means, so let me explain. Currently I have a blood line that enters my chest about halfway between my shoulder and my man nipple. This line has two sides, the venus and the arterial. One to take blood out of me and send it to my Dialysis machine, and one that receives the clean blood to go back into me. Sometimes, over time one or both sides of this line will develop a clot. There are precautions against this, the line gets flushed with saline after treatment and then filled with Heparin. Heparin is a blood thinner, it is supposed to prevent clots but they will still develop.

Tonight my line would not run correctly because a clot has developed in it. One way around this is to run the line reversed. This means that I hook the arterial side of the machine to the venus side of the line and vice versa. Tonight that still did not work and the pressures on the line simply were not acceptable. I've now ended up discounting. I called the off duty emergency line, and have made arrangements to go to the hospital bright and early. They will flush it with what is called cathflow. From what I understand this will basically dissolve the clot.

I would normally work tomorrow but I will probably have to do a treatment of dialysis while there since I was unable to do it tonight.  So I have had to use a vacation day. Most of my vacation time this year has been spent going to various doctors appointments or having various procedures done.


Tuesday, September 14, 2010

It was the summer of '92

193.8     186.8     105/49 69     93/44 85

I love eating things that I'm not supposed to eat. Growing up I had a very strict diet, maybe that's why I've ended up going in the opposite direction in the years after by transplant when I really didn't have a specific diet to follow. Growing up the big thing was no added salt and stay away from high salt foods. That meant if I was taken to a fast food joint we would ask for fresh french fries that didn't have salt. I didn't mind that at all, and to this day a lot of times will not ad salt to my food. What I do remember always wanting and never ever being able to have is Coke or Pepsi. I was not aloud to drink these because of the phosphate in them, something that is also in dairy. The only time I remember even being able to have a small sip was when I was on a family vacation driving to Toronto. That was it, all I was able to drink if I wanted pop was Sprite , 7up, and Root Beer. Maybe that is why it tasted so good that 1 sip I had, I was hooked. This was in about 1990, or 1991 and I would have to wait until April 13th 1992 to taste "Pepsi" again.

The summer of 1992, it would be the last year that the summer and winter olympic games were held during the same year, Whitney Houston married Bobby Brown, George Harrison found out that he was actually 1 day older than he thought his entire life, Batman Returns was released to theatres, and Crystal Pepsi made it's debut. What a Glorious summer! You see, what we were told is the reason pepsi is dark is because of the phosphate content of it. If it's not dark it doesn't have phosphate, I could drink Pepsi! I could finally have something other than a lemon lime softdrink. Up until after my transplant that was the best summer ever, Pepsi missed a huge opportunity with the original formula Crystal Pepsi, they should have marketed it direct to Kidney patients, sold it in bulk to hospitals they could have made a killing. Instead a few months later they gimped it out with a citrus flavour. WTF Pepsi?

They gave it to me, and then you just took it right back, well it was good while it lasted. It would end up only being about another 18 months and I had my transplant and was finally able to drink cola again, and it's been my Softdrink of choice since, even now when I probably shouldn't drink it, I just can't help myself.


Monday, September 13, 2010

Hooked Up

196.2 188.3 108/54 82 102/57 78

I haven't dated a girl since I started Dialysis. I just don't know how to start the conversation to say that I have two tubes... and one of them is coming out of my chest, oh and by the way I'm 27 years old and I recently had to move back in with my parents. It's like the plot of a sitcom. There's been a few women whom I thought were attractive and under different circumstances I may have batted my eye brows a bit and made the duck face.

There was this one nurse at the unit when I was going, however that is a whole different awkward situation right there. While getting hooked up do I just say do you want to hook up later too? Am I miss reading the situation, are they being nice because they have to, or because I'm one of the youngest people there, most dialysis patients are of the older generations. I was basically, well who are all the women swooning over these days? Luke Perry is it? I was basically the Luke Perry of the dialysis world. So is it my cheetah like whit or my devilishly Luke Perry like hansom good looks?

So I guess that is the Ice Breaker for any attractive nerdy women reading this Blog who are into 27 year old guys that live at home and have a tube coming out of their chest.