Stop the insanity!!

So anytime someone suggests that you read your own medical records... back away slowly, and notify the nearest confectionery shop that your acquaintance has not had nearly enough sugar in their system.

Reading your own medical records can have side effects such as confusion, itchiness, long periods of "hmmmmm", chin stroking, and so forth.

I asked the Liaison Nurse here at the hospital cor copies of everything that was sent to the new dialysis unit in Barrie. The main reason for this is because things can get lost in transit, but after yesterday, trust easily comes into play as well. Of course I then proceeded to read each and every document submitted. Yeah.... it was eye-opening. Nothing "wrong" or "bad" in the documents, just eye-opening. Now if only it came with a side of french fries and a nice, cold, delicious milkshake.

Yeah, it was interesting to read, and now I'm done. I think I'll leave it that way now... with another almost 3 hours still on dialysis.

Joy.

It's a matter of trust

So as I've mentioned to everyone and their dog in person, I'm preparing to move to Barrie on the weekend. It'll be a nice change of pace. Barrie is a small quaint town, where everything is no more than a 20 minute drive. This is a nice comparison to Ottawa where everything can be a lengthy drive, depending where you have to go.

So as part of my move, I of course, have to make new hemodialysis arrangements. There is a little dialysis unit of 12 chairs in Barrie. Quite nice. Currently in Ottawa, I have dialysis on Tuesday, Thursday, and Saturday evenings. In Barrie I will have dialysis on Monday, Wednesday, and Friday evenings. Tidies up nicely in a neat little package, doesn't it? The issue is, that the Barrie dialysis unit, for some strange reason, wasn't going to start me until next Wednesday... yes, a week from today, despite the fact I'm moving on Sunday. That would have meant a huge leap without dialysis, which could be fatal.

I got a phone call half an hour ago, that told me the Resource Nurse in Barrie is on holidays until Friday, and we won't know what the dialysis arrangements are until then, because apparently she didn't have the foresight to tell anyone else in the unit. Yes, this is the immediate Friday before I move. It's happened before where I have gotten to Barrie, and I've had to call them once in Barrie, to find out what my visiting dialysis arrangements were.

They've had 2 months notice that I'd be moving there. This does not build confidence or trust in their dialysis unit with me. Let's hope my trust in them, seeing as I have no choice, isn't fatal.

Things I recommend

So people sometimes as me for recommendations for things, so I figure I would list some of those here...

So it's no secret, that for webhosting, I use draknet. I've used them for years, they are super-reliable, and one of the bests hosts I've ever used.

For books and movies I generally use either amazon.ca or Futureshop. Both are generally high-quality retailers.

It may surprise a few people, but for telephone service I recommend Primus, but I don't recommend them for their DSL service. For that I recommend the National Capital Freenet. For cell phone service, I use Virgin Mobile. I like that they don't have any hidden fees.

Oh, and if you need a good Massage Therapist, go and see Matt at the Merivale Chiropractic Clinic.

In other news, dialysis is going ok I suppose. My Saturday's seem to be booked now through the end of June. I'm hoping the tiredness will go away. It comes and goes, but it means naps sometimes because I just get too tired. I really hope things change for the better son. I don't like being tired.

the newness of the day

So I've decided to do an entirely new design for my website. I'm slowly working on it, I hope for it to be up to coincide with my move to Barrie. Oh yeah, I'm moving to Barrie. It'll be better to be closer to family for those times when I really don't feel well, and so forth. I'm starting to really look forward to it.

As a consequence of moving, I'm starting to put some time aside to see people. I may only get to talk via e-mail or phone after I move, so I hope that by seeing them in person, it'll help create some lasting memories. :-)

Dialysis is as dialysis does. No real news on this or the transplant front. But it looks like the dialysis unit in Barrie will have room for me. I've signed all the relevant consents.

Next week is International Tai Chi Awareness Day. There's a banquet at the Museum of Civilization, a parade, demo's on Parliament Hill, and so forth. This is the first time it's being held in Ottawa. Normally it's held in Toronto. The Ottawa branch of the Taoist Tai Chi Society is celebrating its 30th Anniversary.

Coming in June is the Annual General Meeting of the Green Party of Ontario. It'll be an interesting weekend to say the least.

The Day in May went striaght to Fay

Helllllllllllo everybody!!

I come to you live from my living room. It's small, quaint, and cozy. So what is happening in the life of the Peter?

I've been suffering migraines since the end of December, which I'm almost certain that I've mentioned. Then I got a bad cold for 3 - 4 weeks, followed by a severe outbreak of extremely bad acne, that to many looked like a rash, some sort of reaction. The acne is slowly starting to get better. The dermatologist has me on Doxycycline. I see him again in a few weeks.

I'm still off work on short term disability, which I suppose is my saving grace. For those who don't read or watch the national news, the company I work for (they will remain nameless) is laying off the entire site here in Ottawa. It's likely I'll be laid off after I'm off of my short term disability.

But I'm still dealing with high blood pressure, and other assorted health issues. So I've decided to move to Barrie. At least for the immediate future. My parents are there, and my sister is in Toronto, with other family close by. It was the hardest decision I've ever had to make, but I think the move will help me recuperate, and having family around when the need is there, is something that I require right now.

I signed some of the paperwork required to transfer my dialysis to their centre on Thursday. I must say, the nurses there seem really nice. I hope I can stay on evenings.

I really hope my blood pressure comes down. With how extremely high it has been, it's not good for me.

Otherwise things are pretty quiet. I need to find some low impact activity that I can do, to get out and not feel so bored.

Picking at my zits

My acne seems to have really flared up lately. The nurses think I might be having an allergic reaction to a new medication. I'm going to have to talk with the Doctor about it on Tuesday. Some of them are pretty big, almost the size of a nickel. I've started washing my face 3 times a day in hopes that might help reduce some of them.

Dialysis I suppose is going ok. I'm not too sure what expectations I should have for it besides wanting to actually be on by my designated time. Last night wasn't the greatest though. They spent 20 minutes trying to get air out of the circuit.

I still continue to be frustrated by The Ottawa Hospital's lack of emergency preparedness. About 3 weeks ago we had that big snow storm, and despite the advice to stay off the roads, I still had to go in for dialysis. They don't have a back up plan.

This week promises to be better, and more positive. :-)

time for a post

Once again, due to public demand, I present an updated blog post.

In Tai Chi today we did the entire set. It was cool, actually despite the fact I have yet to learn the 2 snakes, but I faked it pretty well I think. It was fun. Very... wonderful. Hard to put into words.

Dialysis is. I'm tired all the time, with headaches. No results yet. Evening dialysis is going better, I like the doctor's so far, but yeah. Still tired. Still headachy.

Working hard to improve my health

So besides Tai Chi, I am trying to actively improve my health.

I have booked a MedsCheck review. On Monday I'm going to go over every last medication with my pharmacist. I've also decided to give massage therapy a try. I hope it may improve these darned headaches.

We'll see how this goes. I'm hoping that these two things that I can actively do myself may help my overall health.

the month that was

So we're a month into 2008 now. What's been going on with me?

Well I started Tai Chi this past January, and have been at it for 3 - 4 weeks now. It's been going really well. Our instructor, Francine, describes it as meditation in movement. I was just reflecting on how it's one of the few places where you don't think about the outside world while there.

I'm going back on short term disability at work. I've been having migraine-like headaches since the end of December, and the doctor hasn't started investigating it yet. They're interfering not only with work, but every day life.

On the dialysis front I have moved to the evenings. I didn't like one of the doctor's covering the afternoon. My only options were to switch times or dialysis centres. I hope these headaches go away soon.

Happy New Year!

Happy New Year!

A few weeks ago, The Voice Magazine (a student newspaper at Athabasca University) ran a really good profile on me. I was excited to see it in print.

Dialysis is going. I crashed at the end of my treatment on Saturday. I felt it for 2 days after. It's not fun. Crashing means your blood pressure drops and a few other things I don't quite understand. I remained conscious. I'm also dealing with almost daily mild migraines, probably related to a medication I'm taking.

My holiday was good otherwise. Relaxing, nice to get away from the general stress.

Have a great day.

the Christmas update

The Christmas Update, brought to you by me, motivated by my friend Ann who wanted an update.

So it's December 24th already. I write this wonderful blog post from the beautiful city of Barrie, Ontario where I am visiting my parents for the holidays.

So what is new with me? I read my friend Diane's wonderful holiday e-newsletter. It gives you that warm, connected feeling inside... ok, not really. But it's good to know what she is up to.

Work has been, as my sister would put it, workalicious. I'm still working 3 days a week, although for about 2 - 3 weeks at the end of Nov - Dec I wasn't feeling so great. I was suffering from fevers and chills. No idea what the source of them was.

The job hunt also continues. I'm working with the March of Dimes and the Ontario Disability Support Program to try to find a new job, but that process is still very slow. I'm considering finding a new agency or Employment Specialist, as the speed of this isn't to my liking.

I'm going to try to start taking Tai Chi in the new year. I'm hoping it will bring me some energy, instead of always being tired, and perhaps some improved health.

The dialysis people here in Barrie are really nice, but no news on that front. I was considering a move to be closer to my family, but we'll have to see where that goes in the new year.

I have no resolutions for the new year. I have this wicked headache today. I hope it goes away.

Be well.

End of year health update

Hi everyone,

So not a lot has happened with my health in the last 6 months. From the looks of things, a living donor transplant will not be happening anytime soon. I've been told of all the nice, loving people that called Haesung, none are a match. So for the immediate future, I will remain on dialysis. For those who have been asking, it is a 4 year wait in Ottawa for a cadaver transplant for my blood type. It's a 10 year wait in the GTA. The Ontario Gift of Life Network uses regional lists.

For a bit of good news, in the US a principal is donating a kidney to a student. Full story.

In even better news, the Green Party of Ontario pulled off their best election ever, and beat out the NDP in 18 ridings. However, that has meant a significant debt to the party. If you were thinking of getting me something for the holidays, I ask that you become a member or donate to the GPO. That would really make me smile. (This is directed at my Canadian friends.) Membership website

I returned to work at the beginning of October part time. I am working 3 times a week, alternating with Dialysis. I am working with the Ontario Disability Supports Program - Employment Supports as well to find a new job that better meets my needs. If you can think of a good employer and/or position either in Ottawa, Barrie or the GTA, please don't hesitate to let me know.

Thank you for being so supportive,

Peter

the Nightmare

I had an absolutely horrible nightmare last night. I almost never get nightmares, but this one was a Nightmare, with a capital N.

In it I had finished my dialysis, but for some reason or another, I had been forgotten about. When I finally did see a nurse, they simply refused to take me off. I think on Tuesday I'm going to ask them to show me how to take myself off should the need ever arise.

A few days ago I got a call from Judy, the liaison nurse at the dialysis unit. No one is being worked up for a living donor transplant. According to Haesung, the living donor coordinator, no one was compatible.

So if I want a transplant, it's a 4 year wait. :-(

Making the Switch

After hearing Frank de Jong talk about it during the web cast for the Leader's Debate Response Party, I gave some thought to it, and looked at the website for Bullfrog Power. They use 100% renewable energy. Well today I made the switch.

I am questioning it a bit though because they want pre-authorized payment, and I don't let anyone do that. The best I'll do is pre-authorized to my credit card, because then I am protected. So I e-mailed customer service. This is a deal breaker for me. If they say no, I'll cancel the contract.

Dialysis is going well. The regular Social Worker Carol Bell is leaving for a new career. Instead we're getting a nice new lady, Cindy Gill. She seem fairly nice and competent. I'll really miss Carol. She's been helping me to return to work.

Happy September 17 blog update

So dialysis is going really well. I'm able to use the time while on dialysis to do my course work. I finished my Occupational Health & Safety course at the end of August, and now I'm working to finish my English course. I'm still trying to work out with work to go back part time, but that's still under discussion.

I also went to visit my parents in their new home a few weeks back, and it's really nice. It's a 3 year old bungalow beside a lot that's destined to become a large park. The neighbourhood has residences of many ages, and there are lots of kids, which my parents are happy about. But they're in the poor section of town. Homes literally just around the corner go for over $1 million.

Que Sera, Sera

So I went over my options today with Human Resources, since Great West Life rejected my application last week for long term disability. (I got the letter in the mail today.) As they presented it to me, I can take an unpaid leave of absence, explore employment insurance options, or return to work.

I'll have to discuss these options with my doctor, and my lawyer.

Que sera, sera
Whatever will be, will be.
The future's not ours to see,
Que sera, sera.

- Que sera, sera

Turn this world around

Yesterday morning I had an ultrasound of my legs at the Civic. It was pretty uneventful. The appointment was painfully early in the morning. (The first appointment to be exact.) But it took half an hour, and I was done. It's another test for a transplant.

Dialysis was the usual boring. I got some reading done, but other than that, it was pretty uneventful. The other day I had a nurse tell me about a patient who was black and blue from the waist to the neck. The serious lack of confidentiality there, and the open-ness of the unit concerns me on a daily basis.

Today I got a call from Great-West Life. They turned down my long term disability claim. Not for the reasons you might expect. It is because of a pre-existing condition, but if I had been insured for a year after being there, I would have been approved. They never asked for a medical. This is seriously annoying. I have a call in to a lawyer for those GWL people reading my blog.

Maybe another letter to the Premier....

Heaven and Earth have moved!!

Wow, I got the most amazing news today.

Heaven and Earth have moved!!

My parents got a call from the nice folks at the Royal Victoria Hospital in Barrie. I'm visiting my parents for a week at the end of August, and they didn't have any room for me at that hospital, or at the one in Orillia. I was going to have my dialysis at York Central Hospital in Richmond Hill, almost an hour away. However, there's room for me during my visit, at hospital in Barrie! Yay!

I had written a letter to my MPP, Premier Dalton McGuinty about the problem.

I didn't realize I could move such large mountains before.

Wow.

The drudgery of dialysis

So absolutely nothing happened today while I was on dialysis.

It was another quiet, boring day. More paperwork to be filled out for short term disability, but otherwise, pretty quiet. The days just seem to drag on.

Dr. McCormick didn't have any news. He still suspects rejection as the cause of the previous fevers. The Social Worker came by to tell me all the paperwork I had given her had been submitted. I got paperwork e-mailed to me late Friday at the end of business to fill out for short term disability. I am happy that I was able to e-mail it to the Social Worker, and it was already finished when I got there today. That was fast.

I got a notice from the hospital that says they're greedy bastards, and that they're going to raise their parking rates. Instead of $25 a month, it goes up to $30 a month. (This is discounted since I am there 3 times per week.) I'm lucky that ODSP reimburses me this amount, but it's still a lot. I'm annoyed that I have to pay to park to receive life-saving dialysis. Seems unethical somehow.

Ah well, tomorrow is another day.

Doctors, and nurses, and sleep. Oh my!

So I had another fever yesterday morning. I had a fever on Friday and Saturday morning as well, and mentioned it to the nurse when I went in for dialysis on Saturday. They opted not to do anything at that time to see if the fever goes away on its own.

It did, for two days.

So they took blood, a swab around my site, etc to check for infection, and sent me for a chest x-ray. Dr. McCormick thinks it could be acute rejection, so he's increased my prednisone. They also gave me an antibiotic just in case.

I didn't sleep very well last night, I was full of itchiness.

I woke up early for an appointment today with the urologist as part of my transplant workup. The appointment was at 9:15 am, and I got there at 9 am, but annoyingly didn't get called in until 10 am. Then there was some sort of administrative mixup and no one knew why I was there. So when I finally saw Dr Mahoney, at 10:45 am, he was shocked to learn that I've had 3 kidney transplants. Most people react with subtlety to this, but he was quite visibly and verbally shocked.

The appointment went on and he went through my (long) surgical history, and I have to go for a test to ensure there is no scarring in my ureter.

So now I'm tired. I'm taking today off and I'll go on to unit 3 in my course work tomorrow.

It really sucks that I need a fourth transplant.

Evil pharmacies and doctors that think they are cool.

So I finally spoke today with the Ontario College of Pharmacists. I filed a complaint at the end of June, because the Zellers pharmacy I went to, refused to fill a medication for billing reasons. They didn't even give me the option to pay for the drug. The complaint will go to a panel of 5 people. 3 are pharmacists, and 2 are from the general public. The complaint will be heard in September or October. The college doesn't deal with billing issues, but they can handle the refusal to fill the prescription. We will see what comes of this.

Today the doctor increased my target weight on dialysis, due to the headaches I've been having after dialysis. Hopefully they headaches won't occur anymore.

The candle of sitting

Saturday's are usually pretty boring days, as far as dialysis is concerned. No doctors, social workers or dietitians on Saturday, despite my decree that if I have to be here on Saturday, so should they.

So I get to watch TV.

Okay, I watch TV every time I'm on dialysis. I really am a couch potato. I even eat cookies if I'm hungry. In my own defense, I can't move about while I'm on dialysis. They don't like you to stand up because my blood pressure could drop, and seeing as I'm physically hooked up to the dialysis machine, I can't walk anywhere, even if I wanted to. I do get restless legs, which hopefully won't last too often.

Yesterday I went to see Harry Potter and the Order of the Phoenix. IMHO, it was amazingly good. I do agree with the "reviews" that say there is no character development, but it nicely ties elements together from the previous four movies, and we again get to see Harry's Aunt, Uncle and that cousin Dudley. The opening is done pretty well with Harry saving Dudley's life using magic.

I recommend all Harry fans see this movie.

Believe in yourself.

Fostering a dialogue

A drug I'm on from my transplant called CellCept is cycotoxic, or so they tell me. It's a pill I take on a daily basis to prevent rejection, and I take the pill at home.

However, the procedures of The Ottawa Hospital dictate that the nurses must mask and grown to connect me to dialysis because of the drug. When I got my dialysis at the General, they didn't do this, but now at the Riverside suddenly they do. It's both confusing and offensive, and I've told them so.

Today I was informed that a dialogue has been started on this matter, thanks to me. They are working to get an exemption so my nurses don't have to mask and grown due to me taking this medication. It causes no real danger to the nurses as they have to wear a mask and gloves anyway as part of normal safety procedures. They just wouldn't have to wear the elaborate blue gown.

I hope this dialogue bears some fruit.

Believe in yourself.

It's been a while...

It's been a while since I've blogged.

Today I bought two of those new President's Choice cloth shopping bags. I wasn't entirely sure about them, but for $1 they hold a lot of groceries. I was able to easily carry my $50 worth of groceries into my apartment, where as with plastic bags I've had trouble in the past.

A few days ago I bought Picket Fences on DVD. I was just looking around Future Shop, and saw it on the shelf. I used to love this show. Back in 2003(?) when I was recovering from surgery at the Civic, I watched a marathon of this show. It definitely kept me distracted.

Health wise Judy (the Liaison nurse) called York Central again, and everything is going ahead full steam for my trip to visit my parents at the end of August. The clerk she dealt with last time is away on vacation, but they will find me a spot. She said the Barrie unit has the problem that they are really busy, they don't even have enough spots for their own people. If I am going to move, we'll start in Sept to get something close to or in Barrie, so I don't have this problem.

Dr. Lavoie said my bloodwork is good, but my hemoglobin is still down despite the fact that my aranesp was raised. So I'm going to be getting IV (via dialysis) iron for 5 weeks, and then once or twice a month after that.

Everything else has been going ok.