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