Thursday, July 31, 2008

Sodium Polystyrene sulfonate oral suspension

Yes, a mouthful, I know!

My Dad went to the hospital today to pick up a travel letter for me, as well as some IV 3000 dressing to hold my button hole needles in place while I sleep.

While there Rose also gave him 3 bottles that look like pill containers. When I shook one of the bottles, there was actually a liquid inside.







My father went on to tell me that Rose had given those to him for me to take on my travels. Almost a "dialysis in a bottle" if you will. Now, by NO MEANS is this a dialysis replacement, so don't decide to skip dialysis altogether and start downing these bottles..no no no. But since I'm travelling, I obviously won't be dialyzing as often or for as long as I would be while at home.

The purpose of the drug is actually to treat increased amounts of potassium in the body. It's described as a potassium binding resin. I'm not sure that I'll actually need it as I've done in-centre, 3 times weekly dialysis for years. On the flip side, my body is probably used to getting its near daily dose of dialysis and may start to go nuts since I'll be missing a couple days. I'll take these bottles with me and I'll play it by ear.

Rose told my Dad that she'll often give these bottles to hemo patients who are travelling. I had actually never heard of this up until now. Quite interesting.

Nervously Awaiting Tomorrow's Clinic Appointment..!

Tomorrow is my appointment with the fracture clinic. I'm pretty nervous as I don't have any idea what is going to happen.

First, I have no clue as to whether or not I'm gonna need to get a cast on. Of the people I've told, some people say that perhaps they'll put a tensor bandage on my ankle, while others say that's impossible as a tensor bandage won't keep my ankle stable enough for the ankle to heal. Others say that it can't possibly be that bad as i've potentially been walking around on this fractured ankle for months.

The point of the matter is, even though I've been walking around on it for months or however long its been...my ankle is still fractured. The only reason I know this is because of the MRI, and that happened just a few days ago. I guess what I'm trying to say is that it is months later and my ankle still shows up as being fractured, and I'm guessing they're not just going to "leave it the way it is". It would be a huge downer to have to wear the cast on my vacation!!

On the flip side, as I mentioned, I'm happy to know my ankle is fractured. Now we can work on fixing it and healing! One of the benefits of going on home dialysis was the ability to d/c many of the medications I was taking, one of them being calcium. Now what am I to do, a woman with osteoporosis, not taking calcium because I'm on home hemo? How will they solve this problem? Anyhow, I do look forward to getting this appointment done and over with so that I know how to continue, as in, getting back into my physiotherapy, massage, acupuncture...and waiting on Dad to buy me my exercise bike so that I can build up those bones!

Tomorrow is definitely going to be an interesting appointment...

Monday, July 28, 2008

Late Night MRI Results

Friday night/Saturday morning was my MRI. Luckily my parents came home on time so my dad was able to take me to my appointment. We left home around 11pm.

I didn't have to wait long once I got there. My sister lent me her nintendo DS so I played "Brain Age" until they called me which was only about 15 minutes later.

Once I got in, they asked me all of the standard questions...you know, do you have a metal plate in your head or any other metal in your body that we should know about, etc etc.

When it was time for the MRI, I lied down on the narrow and uncomfortable bed. The person performing the MRI positioned my leg in a very uncomfortable manner. Another lady came in to help. When I asked for a pillow to put under my knees, the guy said no. I began to wonder why I couldn't have a pillow under my knee when this was an mri of my ankle. As I wondered this, the lady who came to help said "yes...of course she can have a pillow.." she lovingly held my legs up while she told the gentleman to get one of the pillows behind him. Aww.

I stuffed my yellow earplugs into my ears and sang retro music in my head to pass the time.

"I guess that's why they call it the bluueeees,
Time on my hands could be time spent with youuuu!
Laughing like children,
livin' like lovers,
rolling like thunder,
under the coversssss!
And I guess that's why they call it the bluueeees!!"

Before I knew it, the 30 minute mri was done.


Moving on, I got a phone call today from my rheumy's secretary. He's in montreal now but after she saw the results she called him to ask what should be done.

Yup, I have a FRACTURE in my right ankle. Can you believe that? I've been hobbling around/all over the place for like 1 and a half-2 months...with a fractured ankle! I got my ankle x-rayed some time ago but the x-ray didn't actually show anything.

There is a certain medication that people with osteoporosis take that are supposed to help with fractures, but because I'm on dialysis, apparently I cannot take that medication. So now I have an appointment at the fracture clinic this friday. I'm just hoping they don't go and put me in some big'ol cast or something. That would definitely suck since I'm travelling soon...! But the lady I spoke to told me that she's not sure what they'll suggest in the fracture clinic since this is considered an "old fracture".

Geez. Fractured ankle.

Well, I'll report back on the ankle/fracture situation as news becomes available. I cancelled my appointment with my acupuncturist this Thursday because of my fracture. I'd like to get it looked at first before I stick any more needles anywhere. Plus, I'll have to walk a fair distance to get there...I'd like to know what they say about me walking such distances with this fracture..!

Friday, July 25, 2008

Booked - Done and Done

I booked the flight this morning. My Dad called me this morning to tell me to book it. I was still fast asleep and still had 45 minutes of dialysis left. After speaking to my Dad, I went back to sleep, allowed the "End Uf" alarm to wake me up, disconnected, then made the reservation.

When I went to book the flight, I stared intently at the screen, waiting for the price of the flight to appear. It was the same as it was last night. Well, at least it didn't go up.

I went through the entire booking process. I got a confirmation email telling me that the transaction did not go through. I was going to call my credit card company as I thought it was just one of those security things. I decided to call the travel agency first.

I got a lady on the line. She put me on hold for a few moments then came back. She went on to tell me that the reason the transaction did not go through was because the cost of the flight had actually gone up about $50 per person. She invited me to go ahead and continue booking with her and I refused.

I went back on the website and went through the booking process to check for flight prices and the prices were still there. In fact, it is now more than 6 hours later and the price is still the same as it was when I wanted to book. What did she mean the price had gone up!? Nonesense!

I decided to go with another company, one that told me that if I used a credit card I'd have to pay an extra 2%. I decided I'd pay by cheque.

I went through the booking process on the phone...then the guy told me that I could NOT pay by cheque, I HAD to pay by credit card, and that was that. I argued, as it clearly said on the website that I could avoid paying the extra 2% if I paid by cheque or debit. He said that was only in the UK. I told him that this is listed on a Canadian website, and it is not fair that they follow some of the rules on the site (such as charging me 2%) but not others (such as accepting my cheque, which would have been certified). I cancelled that too. He paused, and he tried to get me to reconsider. I refused.

I decided to book directly with air transat. I was not happy with the prices of any of these places, but after discussing with my sister, I went ahead and booked. I know that if I told my Dad that the price went up again he'd definitely tell me to cancel everything!

I'm happy though, as I'm really excited about being able to chronical all of my escapades.

Now, since I have an MRI scheduled for 12:45am, I best grab a bite to eat, then take a nap!

Damn You, Airlines!

Not just sad, but pretty peeved.

I quickly realized that procrastinating where purchasing the family's tickets to England is concerned was not a good idea. One day it was $3882, then the next day it was $4060.68. When I noticed it was $4060, I quickly asked my Mother to drive me to the bank so that I could deposit the $4000 into my bank account, then into my credit card. This way, the $4000 would appear on the credit card right away.

So my Mom drove me to the bank and then back home. We made no stops inbetween. By the time I got home, took my shoes off, and headed to my room where my laptop was (might I add, my laptop was still on and did not need to be booted up or anything) the price had shot up again. The price (this is the price for 4 adult tickets in case you were wondering) was now $4260!

I was angry. How could the tickets be one price at 7:45pm and then another at 8:10pm? I got on the phone and called the ticket company. When I spoke to her, she sympathized with my situation but told me that one the price changes online, then there is nothing that can be done about it. In fact, it was better off for me to book now before the price went up, and I'd be better off booking it online because if I booked it over the phone with a person it would cost an extra $60 or something.

Talk about discrimination against the computer illiterate.

But that's not the point. I know it's a mere couple hundred of extra dollars, but it makes a difference when you're already paying $4000. It's also a big increase when you consider the fact that I still gotta come up with cash to pay for my dialysis when I get there. I'm almost sure that the last time I went to England with my Mom and Dad we paid less than $1500 for all of us. Now it's more than double. The real kicker is when the taxes on the fares cost just about the same as the fare itself. Ridiculous!

Looks like I'll have to make up my mind quickly, because the price might be $5000 tomorrow....!

Thursday, July 24, 2008

I Got Acupunctured..!

This morning after cleaning up/stripping my machine, I got ready and hopped on the bus. I headed downtown to the hospital so that I could finally give Rose my MRSA swabs. She told me that the guy who took my bloodwork was full of crock and should have seen the MRSA swab orders in the system. Great, so that's one extra (and unneeded) trip to the hospital for me. Now I'll have to travel down there again to get the results for the mrsa swabs. The other stuff came back already. The HIV test usually takes a long time, however because my profile in the computer says something about me being on the transplant list, it was done in 24 hours. Groovy.

After dropping off the swabs, it was off to get my massage and my acupuncture. The massage was good as usual, though it wasn't a full 30 minutes. Before we started, I looked at the clock and it was 12:10. When she was finished, it was 12:31. Not nice.

After that, I met with my acupuncturist. He was a cool and knowledgable guy. We spoke for about half an hour about all of my ailments and what I hoped to achieve with acupuncture. After that, I laid down on the bed and he inserted the needles. 31 in total. I've never had that many before, but he was very good in how he put them in. The other times that I had tried it, I had felt pain in at least one pin. So far so good.

The half hour consultation and the half hour acupuncture session cost a total of $35. There was a summer special, so that was lucky for me.

He wants me to come twice a week for the first while, though I'm not sure if I can accomodate that. It'll end up being pretty expensive, especially since my coverage through work only offers a total of $500 coverage, and that's for massage therapy, acupuncture, naturopathic doctors combined. I'll try it a couple more times and see how I feel. If it makes me feel better it might be a good investment.

I brought my camera so that I could have my picture taken with all the pins in me..but I forgot to take it out! Silly me. I hope I remember next time.

Monday, July 21, 2008

If I stare at my dialysis machine hard enough...will it set itself up?

Today was a long and tiring day for me.

I woke up today at 6:15am. This is certainly much earlier than I'm used to. The earliest I usually wake up is 6:50am, and that's only on Saturdays when I have to go to work for 8am. I've always thought this, but didn't actually realize how much an extra 30 minutes or so can mean a big difference between being exhausted and being rested.

I woke up early today because I was going to go and get my hair done. Anyone who knows anything about getting your hair braided etc. knows that it is usually quite the event. I've sat down as long as 10 hours just getting my hair braided. I didn't know what to expect because the amount of time it takes to do one's hair depends solely on the person doing it. Some people doing it without stopping and are really fast. Others stop to do things...like make phone calls, cook 3 course meals, etc. I don't wish for the person to do my hair to starve themselves because they want to get my hair done quickly, but I also don't think I need to sit there while you construct a 5 tiered cake either!

Anyhow, thankfully my father wasn't working today so he was able to drive me to my hair appointment. When I got there, a lovely lady by the name of Ola did my hair. Considering how my hair looks and the number of twists she put in my hair, this is the fastest I've ever had my hair done. It took just over 4 hours. I've sat for DOUBLE that amount of time for a similar hairstyle. I was pleased with the results.

The whole time that I was getting my hair done I continuously yawned. I knew that when I got home I'd need to make myself some lunch and hit the hay for a bit. I did make myself some rice, veggies, and baked some fish. I did go and lay my head down for a bit, but something told me to check my email.

When I checked my email, I saw an email from Rose. She told me that she had received a fax back from the dialysis clinic in England. They had requested updated HIV, Hep B & C, and MRSA results. Since it was already 3pm, I asked my dad to take me to the hospital to get the blood tests done. Apparently the HIV test takes a bit of time so that needed to be sent off ASAP.

I definitely wasn't happy when I got to the blood clinic and the phlebotomist (is that what they call them?) had no idea what the deal was with the msra. By that time, Rose and all of the other home hemo nurses had already left, and I had already been in that hospital for about 30 minutes waiting to get my blood drawn. My dad was waiting outside in the car.

I went back to the home hemo unit where I got information regarding the requisitions for the blood I'd be taking. Megan, the receptionist, didn't know anything about me needing to re-do the mrsa. Perhaps Rose forgot to mention this to Megan before she left. I took the swabs and went back to the car. I decided I'd get more information from Rose and perhaps drop the swabs off later.

After that, myself and my Dad headed back to his station where he responded to important emails and printed off a couple of things for work. Then it was home sweet home.

Now i'm home on my bed with my laptop, staring at my dialysis machine, willing it to set itself up.

Sunday, July 20, 2008

Water Bug Wake Up Call

I never knew that I could go from being in a deep sleep to being up and on my feet in a span of about 2 seconds.

Last night, I went out to dinner with my friend Kerrie. We went for Greek food. Yumm.

I got home just before 9pm. I hadn't disinfected my machine from when I dialyzed the night before as I was running out of time before I had to be on my way to work so I decided that I would disinfect it before dialyzing the next night which is what I did.

The first time around my machine did not disinfect properly. While my bottle of bleach still seems to be about 1/3 full, after the 8 minutes of disinfection, I get a "disinfection" alarm, basically telling me that the disinfectant has not been taken.

So, I went to get a new bottle of bleach and I disinfected all over again.

After an hour of disinfecting, I had my machine set up, my buttonhole needles in, and was ready to dialyze. I set my tv to turn off in an hour. I watched tv for a bit before I drifted off to sleep.

BEEEEEEEP
BEEEEEEEEEEEP!!
BEEEEEP

What the heck was that!! Before I could even figure out what I was listening to I quickly but carefully jumped out of bed.

That dreadful sound was my water bug. I'm sure I may have spoken about this before, but a waterbug is a device, about the size of a PDA, which is used to detect water. It's quite handy as it detects spills and such before they get out of hand. It can be used in places where people feel like a leak, burst pipe, etc may occur. When the slightest bit of dampness is detected by the sensors on the bottom of the water bug, an ear piercing alarm will begin to sound. This is what I was hearing.

I was nervous as I struggled to find the correct water bug as I have one under my dialysis machine and another in a large bucket that has my R.O. in it. The waterbug in the bucket was the one that sounded. When I grabbed it, I rubbed the water bug against my pyjama bottom in an attempt to stop the alarm from sounding and subsequently waking up the neighbours. Nothing. Luckily I had a towel nearby which I used to wipe away the excess moisture.

Being careful of the needles in my arm and the tubing leading from the machine to my arm, I bent down and placed my fingers in the bucket. The bottom was in fact wet. It didn't seem like it was flooding over or anything, but it was definitely wet. I didn't know what to do. Should I disconnect myself? Is there actually a leak?

I went back to my bed and stared at the ceiling for about 10 minutes. I put my fingers back into the bucket and the amount of moisture felt the same. I looked at the screen of my dialysis machine and realized that I has just under 4 hours left. I went back to bed.

I tossed and turned for about 45 minutes. I was very apprehensive about falling asleep. I felt like I might be making a mistake. What if it did flood over?

I put the water bug just outside of the shallow bucket. If it did flood, water would fill the bucket, but if it got severe enough to overflow the bucket, then I know I have problems.

I woke up about 5 minutes before my machine was finished. I looked over at the R.O. and water was not overflowing. I was glad that I didn't disconnect myself from the machine.

My dad walked in just as I gave my blood back and disconnected myself from the machine. I told him about the waterbug and the moisture. He said that it might be worth while to have a tech look at it, but in his opinion, because the machine was using cold water and it was so warm outside (and in the house...) that it was probably moisture caused by condensation. My mom came in after my dad left the room and I told her too...and she also said that she thought it might be condensation.

After removing my needles and fully disinfecting my machine, I looked down at my brown bed sheet and saw numerous beige/pink slotches. AH DAMN! I must have splashed bleach on my sheets while I was getting ready to disinfect my machine this morning. That sucks...but luckily these weren't my expensive sheets. I'm still sad.

After removing my sheets and throwing them in the wash to remove any residual bleach, I went back to bed and slept for about an hour. It was much needed.

So that's my water bug wake up call story.

Friday, July 18, 2008

I got a new message board thing

On the left margin of my blog, there is a little message board where people will sometimes leave me messages (and I love getting messages, btw) :-)

I've switched the message board as the one I previously had was giving me a lot of problems. Aside from the fact that it was always down, I was getting a lot of spam on my wall. When I tried to upgrade my board so that I could ban certain IPs, the website was very happy to accept my paypal payment of $22 and promise immediate access to the "premium" features, but did not provide those features. There were no responses to my emails.

At any rate, I opened a dispute with paypal and will be getting my money back shortly. I'd rather not have something on my site that will break down every few seconds anyways. Really defeats the purpose.

So please, leave me lots and lots of messages on my brand new board. I love them....and I hope this one works better than the last one! :-)

So Far, So Good Bad!

As I mentioned previously, I'm planning a trip to England. In fact, I should be leaving in exactly 4 weeks. Since I'm going to be away for about a week, I'm obviously going to need dialysis while I'm away.

I've been trying my best to co-ordinate my dialysis in England. My aunt sent me the information for a clinic that was particularly close to her house so we decided to go with them.

My first email to the lady in charge of co-ordinating travellers went unanswered. When I emailed my aunt, she had to call the unit and leave messages in order to finally track this woman down. The woman told my aunt that she was very busy and was sorry she didn't get back to me. She told my aunt that she would be faxing the appropriate information that she needed to my unit, which she did. She used the fax number that I provided to her about 3 weeks earlier....

After that, my unit promptly got all of the information ready. When it was time to fax the information back, my unit had a very hard time. I emailed the lady in London who replied with a fax number that just didn't make sense to me in terms of faxing from Canada. When I emailed her again to request additional information on this fax number....she did not respond. I emailed her about 4 days ago and I haven't received a response.

After some googling, I was able to find a website where you can enter in a phone number and the website will format it in such a way that is shows how the number must be entered in order to call London from Canada. I provided that fax number to my father, who by this time had gone to my unit to retrieve the documents that needed to be faxed. He faxed the documents and didn't have any problems. He also mailed the documents to them just in case.

Right off the bat, I seem to be having problems. The last unit that I dealt with when I went to England with my Mom and Dad a couple of years ago lied to us. We requested morning shifts and they agreed. It was only when we got there that they told us that I could have one morning shift, but my other two shifts had to be afternoon shifts. I was pretty angry as they should not have promised us something that they could not provide. For my England trip, I have also requested morning shifts. Hopefully we actually get what we ask for.

I sincerely hope that this unit is not wasting my time. My aunt has already paid the money to this unit that is required for my treatment. I'll have to give that money back to her when I get to London. I just hope they're not going to scoop our money and then give us crap service. My aunt wrote a cheque so at least there is a record of it. Geez...I just want to go on vacation and have stress free/organized dialysis. Is that too much to ask??

Thursday, July 17, 2008

Good Food, Good Friend :)

After disconnecting myself from my machine this morning, I walked over to the place I get my massages to get another massage. It was just as relaxing and helpful as the last one. However I must admit, during my walk there, I thought I was going to give up. It was warm, my feet and ankles hurt, and I was tired. I still wore jeans and a long sleeved shirt (long sleeved shirt with multiple holes in it...like a crocheted shirt) and sunscreen because I didn't want to get zapped by the sun and get some sort of a Lupus rash. But there were so many points where I just stopped walking and considered pulling my cell phone out and calling a cab.

It isn't a far walk. It's about 15 minutes. Still, 15 minutes feels like 15 hours when your feet/ankles hurt. I really need to get back into my water therapy (physio in the pool). I'm sure it'll help.

When I got home, I decided to work on some gum paste flowers. A family friend is getting married next week, and 2 days after that, he is having people over at his house. My mom asked me if I could bake a plain vanilla cake in a bunt pan. My mom isn't too into sugar and stuff like that, and I suspect that is the same thing with many Nigerians. That being said, I can't exactly slather this cake in buttercream and fondant. So, since I cannot do that, I thought I'd make some gum paste flowers to stick in the centre of the cake where the hole is in order to make it look pretty. I'll post pics when that is all done.

Today I met up with my friend Liz. Liz and I were in the same training class when we both started working for the bank 5 years ago. Yep, training class. That class was like 33 hours a week, for 5 weeks, while I was in school full time. I don't know how I didn't fall over in exhaustion, but luckily I made it through...and I'm glad because I love my job.

Anyhow, Liz works in a branch now and not in the offices where I work as she went to teacher's college and spent the last 6 months or so teaching kindergarten. She continues to work as a teller on Saturdays.

Liz and I were always close as we always seem to be on the same wave length. We have similar likes and a similar sense of humour. Since parting ways where work is concerned, we've consistently went on "dates" just so that we could keep abreast of what was going on in each other's lives.

Every year, Toronto has something called Summerlicious. There is also Winterlicious. This is where some restaurants will have a menu with various starters, main courses, and desserts that you can choose from with a certain price. This price is often (no, definitely) much cheaper than what you would expect to pay in such a restaurant. I made a reservation for a restaurant called Autogrill. We had a great meal which only cost us $25 each, which would normally cost us about double that. I loved the atmosphere. It was young and hip, while still being classy and sophisticated. Our waiter was very attentive and helpful. If you're in Toronto and you're looking for a restaurant where you can just sit back and enjoy good food with good company, I highly recommend the Autogrill at 495 Eglinton Ave W.

Anyhow, Liz and I spent the time sharing food and sharing stories. It was fun. We chatted about our lives, our plans, what was new in our lives, etc. I haven't seen Liz since I started home hemo so I told her about that. She was very happy for me as she also agreed that this must save quite a bit of time for me.

Well, I'm tired as I had a long day so I'm gonna call it a night.!

Tuesday, July 15, 2008

Ahh...Massages are Grand

I have these little aches and pains everywhere.

Well, not everywhere.

My lower back and my feet. I have some MRI's coming up because of this pain. Well, I have one MRI of my head. That MRI is a follow up MRI because the last MRI of my head occurred just after I made a full recovery from my "I'm suddenly and randomly paralyzed" episode. It was normal then, and my rhumy wants to ensure it's still normal now.

The 2nd MRI is of my ankle. My ankle and feet have been hurting on and off for a few weeks now as I had mentioned previously. An MRI will show whether or not I'm developing avascular necrosis in my ankle. However I'm experiencing pain in both of my feet now.

The other day, I remembered that I still have some prepaid massages left at the clinic near my house so I decided to get a massage of my lower back. I got my massage yesterday afternoon. While the 1/2 flew by as if it had only been 10 minutes, it was still great and my back feels much better already. My massage therapist, Julie, applied heat to my back while doing the massage. It was so great that I scheduled another one on Thursday.

I also decided to try out some acupuncture again. They say that acupuncture is good for many ailments, aches and pains and such, so I decided to give it a go again. The last acupuncture that I got was from a naturopathic doctor, however I haven't been to that clinic in a long while, and since I'm already going to this particular clinic, why not? I will also resume my water therapy/physiotherapy as well.

I'm hoping that I'll begin to feel a lot better prior to my up and coming trip to England. I can't wait for the trip. I plan to chronical every bit of my trip and also take lots of pictures of the dialysis unit I'll be going to in London. I'll take lots of pictures obviously too.

I probably won't have access to a computer while in England, and if I do, I probably won't have time to write a blog entry the way I'd like to. My plan will be to jot down all of my plans in a book, then when I return home, I'll back date the entries for everyday of my trip.

I'll definitely keep a log of how my treatments (massage, acupuncture, physio) are going.

Monday, July 14, 2008

ER = Extremely Ridiculous

I dialyzed myself on Thursday night but not on Friday as Friday is my day off.

Late Saturday evening, I remembered that my foreclean needed to be changed so I took that oppourtunity to change it.

Unfortunately, when I was reconnecting the new foreclean to the machine, I plugged one of the plugs in the wrong place. There are 4 holes but only 3 plugs. One of the 4 holes is sealed and is not supposed to be used, but smart me plugged the plug in the wrong place.

When I turned the machine on with the intention of disinfecting my machine, I heard an annoying beeping sound. It was my waterbug (waterbug = little device that detects spills, leaks, water, etc). I saw a small about of water on the floor. As I panicked and went to turn the water off, I knocked over my slurpee cup! There was a very small amount of liquid in there but it was still annoying....but I'd be getting the mop out anyways....what's an extra few millilitres of fluid?

I reconnected the foreclean properly, turned the water back on, and waited. I could hear that dreaded sound of leakage again. I got down on my stomach and looked right underneath the machine. Water. It was not coming from the foreclean filter area which is on the back of the machine, but right underneath the machine. I turned the water off again and called the technician on call.

"You know why this happened?" the tech asked me. "No I don't....what happened?" I asked excitedly. I was very curious to know what the problem was.

"YOU'RE TOO ROUGH WITH YOUR MACHINE!!!" he exclaimed with an almost scolding tone in his voice.

"WHAT???!?" I practically screamed. What the heck did he mean by "too rough with my machine?" Like, do I throw the behemoth of a machine around carelessly?? Did I use a jack hammer to remove the foreclean from the back of the machine? Do I use dynamite to disinfect the machine??? What the heck was he talking about!!?

He told me that a tech would be by to fix the machine on Monday. Great...I haven't dialyzed since Thursday, the dialysis unit will soon be closing, and they're not open on Sunday. Would it be a good idea to wait that long to dialyze again? I didn't think so. The tech suggested I go to emergency, so I did.

My Mom and I got to emergency at around 11pm. I signed in and did all of that junk that you've gotta do when you get to emergency such as have your temperature and blood pressure taken, then I went back to sit down. I took my sister's Nintendo DS with me so I began to enjoy a game of Super Mario.

My hands started getting tired. I looked over at my mother who was fast asleep in her chair. I then noticed a police officer holding a piece of paper come into the emergency room waiting area. I heard him say my name and I saw the triage nurse point at me. His name was P.C. Brar. He came to check up on me as per my father's instructions. My father couldn't check up on my as he was in Parry Sound for an annual camp that he holds at the native reserve for kids in the neighbourhood. He knew I was there because I called Sgt Skye, the police seargent over at the reserve as I knew Sgt Skye would know how to get in contact with my Dad.

PC Brar was very sweet. We chatted briefly and he gave me a phone number other than Sgt Skye's. I called Dad back and told him that PC Brar was there. After PC Brar was assured that I was ok, he went on his way. Oh, Lo and behold! The nurse called me in. What a coincidence.

Mom and I went into a room where I laid my tired body on an uncomfortable stretcher. My mom sat in a chair in the room that looked like a dentist chair. Luckily it had mechanical controls on the side so Mom was able to recline back in the chair. We fell asleep.

At around 2am, a doctor came in and asked me a few questions. She went on to say that she'd call nephrology in the morning to assess me. NOOOO!! Don't you get it?? I came here TONIGHT in an attempt to be proactive, not because I wanted to sleep her all night with no progress being made!! ARGHH!!

Mom and I woke up at 9am. Still nothing. We walked to the Tim Hortons where I got breakfast and my mom just got tea. I was less than happy because no progress had been made, and if I were to sit there and wait for things to be done, much less wait for a machine to appear, wait for the machine to be set up, the actual dialysis time....I'd be there for 24 hours for sure.

One of my old doctors that I recognized came in to see how I was doing after mom and I returned to our little room in the ER. She said she would have some blood tests taken to see if I was in dire need of dialysis, otherwise I could just wait until tomorrow when the tech comes to my house to fix my machine. Fine.

Blood test got done at around 10:30am. By this time, Mom had already headed home as she did not want her car to get ticketed/towed away.

Shortly thereafter, I got evicted from the room I was in and banished to lay on a stretcher in the hallway. Greattt.

I pulled out the DS again and played some more Super Mario.

By 2pm, I was certainly getting annoyed. I called my nurse and asked her to call nephrology. About 30 minutes later, a nephrologist that I had seen around before came and asked me what bath I'm on. I told him 2k. He told me that I should talk to my dialysis unit about being on a 3k bath.....he then told me that my blood work was fine and I could go home.

So, basically I just wasted a day of my life for no reason. Why oh why couldn't that doctor who came at 2am order blood tests so that this could have been resolved ages ago??

So, I called my mom and went home. My machine is now fixed. Cesar, the nice man who came to fix my machine, laughed histerically when I told him that the other tech I spoke to on the phone told me that I was too rough with my machine. He told me that the pressure created by plugging the foreclean into the wrong spot caused tubing inside of my machine to separate, therefore causing a leak. It took him less than 2 minutes to fix.

I spoke to my nurse Rose and she told me that there was no reason for me to be on a 3k bath.

I'm happy to be home...but GEEZZZ! WHAT a waste of life this weekend was! Now I've said it before, I'm happy to be in a country that has great medication, and treatments, etc...but to be in an ER for 15 hours, to have a blood test and then be told to go home....c'mon. That is Extremely Ridiculous..

Nope, I'm not being forgetful, nor am I neglecting my blog!

A thunder/lightning storm on Wednesday zapped my modem.

The fact that my modem got zapped was both good and bad at the same time. It was bad because I couldn't do homework for my online course, nor could I update my blog. On the other end of the spectrum, it was also a good thing. I learned that I wouldn't melt or turn to stone if I don't check my facebook at least 100 times a day, nor will life stop if I don't return emails immediately.

My sister went to the internet company and got a new modem from them on Sunday...so I'm back in business!

Monday, July 7, 2008

Home Hemo, Yay or Nay

I was very resistent to Home hemo at first as I have probably mentioned numerous times. I had no interest in having a dialysis machine in my bedroom and having to stare at it everyday. It would just be confirmation of the fact that my kidneys are broken and I suck. Dramatic, yes, I know. But that's how I felt.

I was psyched for my transplant. There had been so many setbacks and finally it looked like it was going to happen. Flares, illness, paralyzation for crying out loud...all of these things got in the way of my transplant. But then, in the end, my loving and giving father was found to be ineligible to donate his kidney to my at the last moment. They said his blood pressure was too high. Yes, one would think that would be one of the first things they'd look at as opposed to psyching us up, and telling us they were going to put us on the cancellation list so that we'd be called in if any other surgery was for whatever reason called off...but I honestly believe that particular transplant wasn't supposed to happen. Perhaps something would have happened to me or my father if he had donated a kidney to me. That wouldn't have worked...because I need him and he needs me.

I was disappointed that I wouldn't be getting my father's kidney, but I at that very moment I had made the decision that I was no longer going to allow myself to be held hostage by a Tuesday, Thursday, Saturday schedule. If I was ever going to go to school and go to work, I was going to have to do this on my own.

Aside from despising the idea of having a dialysis machine in my room, I also wasn't comfortable with the idea of cannulating myself. I think cannulation in general has left me scarred. I've had shakey handed butchers shove sharp needles into my arm and miss the vein by miles. To think that a nurse actually laughed her head off when she tried numerous times to cannulate me without success only to find out by another nurse that she was in all along, all she had to do was draw back on the syringe. Then...she laughed. "HAHAHA, OH! I WAS IN ALL ALONG!!! HAHAHA!".

She laughed. I cried in pain while Eddie, one of the hemo assistants, held my hand and looked at this nurse with hatred in his eyes. While one might think that would scar me in terms of having other people cannulate me, it just scarred me where cannulation is concerned period.

After learning how to cannulate myself during my home dialysis training, I've learned that I much prefer cannulating myself.

It's been about 4 months since I started dialyzing at home and I feel great. I couldn't be more happy that my apparently drug resistent form of anemia is started to normalize. I never thought I'd see the day that my hemoglobin would be in an almost normal range.

It's also great to have a 7 day week and not a 4 day week. Dialysis days were pretty much a complete right off. I'd go to dialysis in the morning, come back and be home at around 12:30pm, sleep until about 4-5, eat, do nothing, then sleep again. Now I have my days back.

I don't think that there has been a day yet where I said to myself "I REALLLLY don't want to dialyze tonight so I'm gonna skip it". I haven't had one of those yet. Well, I've felt that way, but I've never actually skipped. I actually find that since dialysis tuckers the heck out of me, I tend to fall asleep quickly and feel quite rested afterwards.

One of the parts I don't like is setting up my machine in the evening. 8/10 times it's ok, but other days I wish I could wiggle my nose a la Bewitched and all the lines would be on my machine. But if I just sit on the edge of my bed and take my time, it's never that bad.

I also don't like these supplies receiving fiascos that keep occuring. Though I'm sure that'll normalize itself with time.

The verdict? If you have a choice between home dialysis and in-centre dialysis, all I can say is this. If you love your life and want to regain/maintain control of it, then I whole-heartedly endorse home dialysis. Now that I'm on home dialysis, I can't imagine how I managed to stay on the 3 day schedule in the past. Switching to nocturnal dialysis has made me realize how crappy I used to feel. I simply didn't notice the crappy feeling because it's how I felt all the time. Now I feel better, I have more energy, my labs are great, and I don't have to go anywhere to dialyze. I think it's also important to realize that in-centre dialysis (for me anyways) was 12 hours a week. A person with functioning kidneys has kidneys that are doing its job 168 hours a week. That's a big difference. While nocturnal dialysis isn't obviously equal to 168 hours a week, it's definitely a LOT better than a mere 12 hours per week, which is essentially the bare minimum required to sustain life. I don't want to live in the "bare minimum". I want to be happy and healthy, and that is exactly what home dialysis offers.

Perhaps my day for a transplant will come in the future, but until then, home hemo is DEFINITELY the way to go.

Wednesday, July 2, 2008

Fistula Leakage??

When I went to the hospital on Monday to drop off my bloodwork, I had a chance to chat briefly with my nurse, Rose.

She asked me the general questions that I suppose a home dialysis patient is asked. Well, before I even get into that, when I walked into the office, Dr. Chan (nephrologist), Liz, and Stella (other dialysis nurses) were all there. Rose and Celine were with patients. Everyone commented on how good I looked. They all commented on my skin (hmm...is it home dialysis clearning up my skin, or is it obagi? I think a combination of both...but if I could place a percentage on it, I'd say it's probably 70% dialysis and 30% obagi). I handed my blood to Stella and she began to print the appropriate labels.

When Rose walked in, she and I began to speak. She asked if she could see my fistula and my button holes. I took my hoodie off and Rose peeled my band-aids off. She said that my button holes looked great. She asked me about the second set of button holes that we had established. I told her that I pretty much abandoned that set of button holes as they constantly gave me problems. I've been doing pretty well with this single set. She told me that it was great that I was having good luck with my button holes, but I would need to establish a second set. She went on to say that if I didn't, I'd start to experience "fistula leakage".

Fistula leakage??

She told me that I could either use the sharp tipped needles to establish a site on my own, or I could come to the dialysis unit and establish the new button hole sites. I told her that I'd come there when I had time.

Now I'm sure that I heard or read somewhere that having one set of button holes was totally acceptable. I didn't know that there was such a thing as fistula leakage.

Does anybody out there have only one set of button hole sites? Have you had problems with them after a certain period of time, namely "fistula leakage"???

Tuesday, July 1, 2008

Happy Canada Day!! (aka Mommy/Daughter Day)

I had it in my mind for a few weeks now that I'd like to spend the day with my Mom. The other day I asked her if she would like to go to the park or something on Canada day, and she said that she'd like to go downtown somewhere, perhaps by the water. So after I disconnected and disinfected my dialysis machine, I hopped into the shower, got dressed, and both myself and my mom walked to the 7-eleven near our house to purchase a day pass (best $9 ever spent...my mom and I took SEVERAL bus trips!)


First, we went down to harbourfront for the Canada Day festivities. There were tons of people and tons of vendors. I bought a blue scarf for next winter and I bought both myself and my sister keychains. When I was young, my sister bought me a necklace. The necklace had a clear tube pendant filled with liquid. In that liquid was a piece of rice with the word "Flow" on it. I found it so fascinating. I was less fascinated with it when the liquid in it either leaked out or evaporated...but I still wore it for a while. At the harbourfront, I saw a man making those same charms. I got keychains this time since I'd never wear a piece of rice around my neck nowadays. I got a little clear keychain pendant that looks like a turtle and got "Liz" written on it. I got the same one for myself too, saying "Flow".


After that, we ventured down to Woodbine to go to the beach. My mom was happy to go as she had never been to the beach (previously known as the beaches). We walked on the sand by the water. Man was that sand HOT! I felt like my feet were on fire.


After stopping at pizza hut for some grub, we headed back on the bus, back to the subway, and back to harbourfront. We walked around some more and just had a great time. I love spending time with my Mommy.


Check out the pics of our fun time. Take note of our festively coloured shirts! Hehehe.

















This sign was hanging up in the ttc streetcar. I thought the fact that there are all these male references in the sign was funny. Do we not have female streetcar drivers?? Wait...yes we do...I saw one today.









 
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