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Wednesday, October 01, 2003

I'm writing in here for the first time today because I'm bored. I usually don't like to talk about my pph but I thought..what the hell - if anywhere is the place to do it, it might as well be here. I was recently diagnosed with this horrible disease on May 6/2003. Previous to that day I had been feeling like crap for about two years and I could not figure out what was wrong with me. Neither could anyone else. Like most of us we just thought we were simply out of shape. If it were only that easy. Anyways that's what I thought and I also was told by my doctor that I had asthma and of course needed to stop smoking. I finally new it was more serious than just that one day when I was babysitting my friends son. We were downstairs watching TV when he asked for a snack. By the time I made it upstairs I headed straight to the bathroom because I was thinking I was gonna get sick. I sat down on the toilet seat, felt all the blood and energy rush out of my head and the next thing I remember was waking up lying on the ground hitting my head against the counter. It was sorta like I was having a seizure but I really don't know if I was or not. You should have seen the bathroom, I had knocked everything off the counter -even the little thing that holds the toilet paper was on the ground. I looked in the mirror and I had a huge bump on my forehead. It was crazy. I was really scared. I've fainted two more times after that - once was extremely bad where I slipped on ice and that got me all dizzy and seeing stars and I didn't want to get up, but I did because the cab was waiting. When I did get up I think I walked maybe three steps and fell flat on my face. I woke up not knowing what the hell happened because all my friends were around me and I was told not to move the ambulance was on its way. I couldn't believe it! Nothing like that had ever happened to me and as I was lying there on the cold ground crying and freaking out, I just did not want that to be me. There was sooooo much blood and I had to get 6 stiches and you should see the scar on my chin now. I had actually chipped the bone and this was about 6mths ago....my chin is still numb and it hurts like hell. It was a horrible terrible situation. The other time I fainted was very weird - not so bad though cause I was lying in bed. I had came inside from a cigarette, walked up 5 stairs to my bedroom, sat down on my bed and by that time all I could hear was the beating of my heart. It was so loud I couldn't believe it. And it was beating so fast, I just couldn't breathe. A couple seconds went by and I was just praying this would stop soon. Then I heard ringing in my ears. That didn't stop for a few minutes and kept getting louder and louder. I woke up just lying there and I thought it was very strange and knew I had to see my doctor.

I had been seeing my doctor regularly but like I said I was told it was just asthma. The day I went to the hospital was because my ankles and feet were swollen. They had been swollen for a few days but honestly I didn't think of it as a big deal. Finally though, no matter how much I stayed off my feet, kept them elevated, took some ibuprophen and nothing was helping, I agreed to let my mom take me to the hospital. It was a day from hell. Actually 10 days from hell because they kept me that long. In emerge, they looked at me and said "you defintely need to see a doctor, you look fine on the outside but something is definatly wrong here." So I waited and waited for the doctor to look at me (and this took hours of course) and to make matters even worse, the SARS thing was going on at this time, so the hospital was under very strict conditions and I was not allowed visitors. About 4hours later, the paramedics came and strapped me into a bed and told me I was going to be transferred to Memorial Hospital because there was no beds at the General. So I get to my room, and I end up having the roomate from hell. This lady scared the shit outta me. She was telling me all kinds of things that she thought was wrong with me. She was saying I might have to go through dialysis, they might just put a catheter in me to drain the fluid, or she also thought it might be something as simple as gout. She kept telling me that I was in a critical position otherwise I'd be on a different floor because the 4th floor was only for patients with serious heart problems and people who have had open heart surgery.

She meant well but really I'm only 24years old she did not need to have to scare me like that. I just wanted her to shut-up and go to sleep. And she'd always try and console me and tell me not to cry so much. Sometimes I would pull the "curtain wall" closed when she was gone from the room to get a little privacy but as soon as she got back she'd pull it open and say she needed to see what was going on in the hallway. I couldn't believe this. The hallway. Seriously. Do you want to know what was going on in the hallway?! Oh my god, old men farting and puking and hacking up there freakin lungs and everyone talking about being so sick and death and every other discusting and sick thing you could think about. I hated everyone and just wanted to get the outta there. The next morning I had woken up to a nurse saying that I was going to be going down for my renal ultrasound in about 15min. And this is kind of a funny story actually it's hilarious. When she told me that I almost died. I started crying like crazy and I called my mom and my boyfriend and told them what they where gonna do to me. They couldn't believe it either. I was still freaking out when the girl came to get me (with a wheelchair). I was pissed about that too because I felt like I did any other day - I could walk to the elevator and down the hallway but no, they wouldn't let me. Anyways I was crying and asking her about it and how I just couldn't believe that they were gonna stick a camera up my butt. Yes, I had thought the nurse had said rectal ultrasound. And the girl who was wheeling me around didn't have a clue either. She's trying to calm me down and I remember her even saying "it will only hurt for a minute". When I got downstairs to the ultrasound room, the nurse actually laughed at me and later with me. She said "God no, this is a renal ultrasound, we will only be looking at your kidneys." I was so relieved because I knew there was nothing wrong with my ass!!!

So I went through many ultrasounds hundreds of bloodtests and finally came to the awful conclusion that I have primary pulmonary hypertension. When they told me this I was so angry. My hospital stay was very unpleasant and the evening of truth came when I was actually feeling pretty good. I had just got off the phone with Wes (my boyfriend) and I was all set to watch the season finale of Survivor. I was minutes into the show when this doctor comes around to my side of the room.....by this time my roomate from hell that been released and I was lucky enough to move to her side - the window side. Also I constantly had the curtain shut so I was doing alright. So I see this doctor and I take off my headphones. He tells me what I have and he tells me there are medicines for this but unfortunaltly, no cure. He's telling me that I might need to walk around with a tube sticking out of my neck (permanently) or I might need to get a heart and lung transplant. Now I'm LOSING IT. I came in here because I've fainted one or two times have trouble breathing and now I heave to get a heart and lung transplant!!! I had never been in this state and had never cryed so much in my life. They let me have my mom and my aunt come and talk with me and this doctor (who is now my cardiologist) and he explained things to them. It was awful. He asked me if I could get to Toronto or to London and I told him that I wasn't going to Toronto in a million years. (This is where the SARS crap is taking place.) Also my aunt lives in London so even thought its 2hrs further it's way better. So this is where my ph specialist is - London ON. He's a great man and has helped me alot. The heart catheter was also another HORRIBLE situation that I will never forget. Everyone says "It's more uncomfortable than it is painful" but its was both. I was told I was the most tense patient they ever had during a heart catheter. It was uncomfortable because you know something is in your neck and you can hear them pushing the tube down. It was discusting. And I could not cough or sneeze for a week without extreme pain. I hope I never have to have another one again. I heard people in the States have to have them every year....not us Canadians. Thank god I don't live in America. I say that but I know that you do whatever you can to keep on living. I used to be deathly afraid of needles. Now I go for bloodwork once a week. You do what you gotta do.

Friday, October 03, 2003

Hey again.  You know, all my life I have loved writing and have always had a book that I wrote in but I always hated calling it a diary.  I still pretty much do.  Don't ask me why but I find it embarrasing.  I have a few other words that I really can't stand either.  Me and my boyfriend recently bought a house, and of course I have many decorations that I needed to put on end tables, coffee tables, the kitchen table, and I knew that they needed something underneath them but I absolutely Hate calling them doileys.  I have a hard enough time even writing the word let alone saying it.  Another one is pansie.  What in the hell is a pansie anyway?  I think it's a flower but I really don't know.

I just really had to get that out of my system.  So as I was saying, writing always made me feel better about things.  It's always just writing about my feelings, when I was a kid I tried to write a few stories but that did not work, but when I write down things that happened to me especially this pph thing, it helps me alot. 

I recently went for my third trip to see my specialist.  It turned out to be a really good trip.  The first one was awful cause basically I was going there so they could "confirm the diagnosis", the second time was probably even worse cause that was my catheter trip but this time they were pretty happy with me.  On my first 6min walk, I covered 360 meters and had to stop 3 times.  Afterwards I also felt like shit.  This time, I covered 510 meters, didn't have to stop and when I was done I felt fine.  My heart was still beating like crazy but I was breathing normally.  They said I was the best patient they had seen yet, except there are patients right behind me.  I was told that my pressures are still a little high, so my doctor wants me to up my medicine and start excersising my heart.  Well not my heart but that I should start excersising to make my heart stronger.  He said the stronger my heart, the more my pressures will go down.  That's cool though, I'm going to borrow my mom's treadmill and start walking as much as I can everyday.  Maybe not everyday, but I'll try.  Ah, I think Friday, Saturday and Sunday will be my "day's off."  I am excited about this though because I haven't been able to do anything like this in years.  Maybe I'll loose a little weight at the same time.

So the medicines I'm taking are norvasc, warfarin, and digoxin.  He only wants to increase the norvasc, he actually decreased the warfarin to 2mg a day.  With norvasc right now I'm at 20mg, but he wants me to climb slowly to 30 (or until I see side effects.)  When he told me that I could not really understand why he would want me to experience side effects, but he said because when I do see them, I will know that I am at the highest level my body can handle and he said I'll start to feel even better after the side effects go away.  Now yesterday, I was talking to my family doctor about this and he said basically the same thing except he said until I can tolerate the side effects.  Tolerate?  As if I want to feel dizzy again and lightheaded and the ultimate worst is the swelling.  I can't handle that.  It's only usually in my ankles and feet but I really don't wanna feel like a cow all the time.  And I know that with the water pills that sometimes takes care of it but having to pee every 5minutes isn't my idea of a good time!  You can't go anywhere like that.  Imagine going on a trip and having to stop constantly on the highway so I could pee?!  No thanx.  And I also know that with CCB'S a common side effect is swelling.  MOTHER OF GOD.  I'll never be able to go back to work which after christmas I am looking forward to going back or -just simply doing something- but I sit at a computer for 8 hours at Canadian Blood Services.  There's no way in hell you can do that with swollen feet, because not only are they big but they hurt.  My mom told me just to bring something to my desk to stick under my feet, but I asked her if she could sit at a desk all day with her feet up.  It might sound relaxing to some people but give it a try and you'll see , especially since the feet are supposed to be higher than the heart.  Not possible.

Friday, October 03, 2003

This whole phcentral site is a pretty good thing I guess, but I do alot of reading here and often I get very depressed.  It's pretty damn depressing!!!  I think it is mainly a fear of mine that one day I will end up feeling like many do.  SICK.  I have been feeling fine since about July, but I do have alot of worries.  I'm scared to death that my meds will stop working one day.  And they most likely will, but I can't deal with that anytime soon.  I don't know if I ever want to go on Flolan.  I know the option is live or die...., but right now I don't want it.  Not at all.  And that's also how I feel about having another heart catheter...., I think I might rather die.  Now I know this is not true because of course my biggest fear is dying.  Especially dying young.  Like I said before you do what you gotta do to keep on survivin'.  But I just read someone else's diary, and she said she has trouble reading now.  I hope that this doesn't happen to me.  I love to read.  Alot of times I'd rather just stay in, get in to my pj's and read a good Steven King book.  He's my favorite right now.  I really can't imagine not being able to read anymore.  I know it's not that you can't actually read, it's just the concentrating part...but I'm dreading if that ever happens to me.  This disease is scary man. 

Since I feel so good, I usually don't even think about it that often.  Well that's not true but I try and live as normal as anyone else can.  When I got sick, my doctor told me that I couldn't drink anymore and I had to quit smoking.  I think I have finally conquered the smoking thing, but I still have a couple beers whenever I feel like it.  I think I wasn't allowed to drink because I had to keep my INR at a certain level, well I also have that figured out and it's been good for about 9 weeks now.  My family doctor was very strict with me about this he told me that I can have a beer at x-mas and a beer on my birthday.  Whatever.  I know how to take care of myself and I am 24 yrs old, this is what we do on weekends, have a good time and have a couple drinks.  I honestly don't really care.  With this situation, I'm gonna do what I feel like doing.  And it's not because I'm an alcoholic because I'M NOT but pretty much every Friday, and sometimes Saturday's, all my friends and I would get together and usually go out to the bar afterwards.  As a matter of fact I'm going out tomorrow, it's my friend Leanne's birthday.  I think I might buy myself a bottle of crown royal.  I've been craving that lately.  Ever since the song "Ignition" came out and the part that goes "sippin on coke and rum' I'm like so what I'm drunk..., it's the freakin' weekend baby I'm about to have me some fun !!!"  Only because one day last winter at Wes' Inco party when I was drinking rye and coke, that song came on the radio for the first time and I loved it.  I'll never forget that day for some reason..  It was just a really good day with a damn good night.  I have no idea what were doing tonite, Wes is probably working til 6:00, which sucks, and the weather sucks even worse.  It is sooooo cold outside and it's rainy and just ugly.  I can't believe it's only October 3rd (gotta call Lori, it's her b-day today) but it's been snowing off and on since Tuesday.  I'm not ready for the snow yet.  Oh well.  Well I think I'm gonna go find something to eat and veg on the couch for awhile. ~ Later ~

Sunday, October 05, 2003

I should be sleeping, but I just can't fall asleep even though I'm so tired.  Last night was a late one.  I think tomorrow I might finally try and make those sweet and sour meatballs that I've been putting off making.  I think I'll do that when I wake up, watch Days at 1:00, clean the house and have my shower, go for my bloodwork then who knows.  I know on Tuesday, were going to pick up the blinds for living room (FINALLY).  This week should be interesting, theres lots to do.  The weekends from now until December are gonna suck because it's hunting season.  Moose hunting from Sat until November, then deer till December.  Great.  I'll be all alone.  When Wes goes to the island for deer, I think I'm gonna go back to my mom's.  I don't know if I wanna stay here all by myself for a week.  I'd probably be too scared.  This Sunday I'm going to grandpa's camp for Thanksgiving.  That should be cool.  I haven't been there for a few months, it's just too bad Wes can't come.  Especially since he's the one bugging me all summer to go up there.  Then on Monday his parents are having Thanksgiving dinner at there house.  Man, I'm gonna be stuffed full of turkey.  Turkey and booze.  Should be right on.

Wednesday, October 08, 2003

 

I'm just bored right now and I don't feel like watching TV yet.  Soon, but not yet.  Today the stupid satellite card was down so, I got out of bed and went straight to cleaning the house.  I did alot.  These floors though, they drive me freakin crazy.  And it's really weird because I'm reminding myself so much of my mom, (which I do not want!) but it's true.  People come in the house and I'm like "don't walk on the floor with your shoes on, don't touch that or don't touch this."  All kinds of motherly things I guess.  Even though I'm not a mom and probably will never get to be, I just cannot help it.  Like, I have these black towels in the bathroom right now and I'm trying to keep reminding wes there just for "show."  I mean I seriously can't be changing the towels in the bathroom every single day, but if wes keeps using them, I'll have to.  It's not my fault he is a MAN and he wipes toothpaste on the towels or shaving cream but it's like use something else or wash it off with WATER first, then it wouldn't be so bad.  But he doesn't.  And I love him like crazy it's just I'm getting used to living with a guy and having to clean up after himself and myself.  Oh well that's life I guess.  As I was saying though, the floors give me the most trouble.  I have no carpet in my house the rooms and the living room are hardwood which I love, but the kitchen and dining room are linoleum.  White linoleum.  There IMPOSSIBLE to keep clean.  I sweep (2-3 times daily) then I wash the floor, then I vacuum the floor.  It's insane.  The reason I have to vacuum afterwards is mainly because of my hair.  I've had long hair all my life, long dark brown hair and I find it all over the house.  A day does not go by that I don't pick up huge amounts of hair and it's making me sick..  I'm seriously debating on shaving my head.  And on the white floor you can see as much as an eyelash lying there.  I know most people cannot see these things but myself, I hate living in filth, I'm a very clean person, I like to be clean and I like my house to be clean.  Keeping up with it is harder then I ever imagined!  I've literally broken down 2 or 3 times now because of these damn floors.  People might laugh but it just drives me crazy that I do all that I can to keep it clean, and it still looks dirty.  Not even that but hours after it is clean, it's dirty again because of going in and out all the time.  Plus our driveway isn't paved so that doesn't help at all.  I think I just have to not care so much and just try not to think about it all the time.  I'll see how things go tomorrow., don't think I'm crazy......

Thursday, October 09, 2003

ALL I WANNA SAY TONIGHT IS THAT I HATE LIVING WITH THIS STUPID FUCKING DISEASE.  I HATE IT SO MUCH WHY THE FUCK DID I HAVE TO GET?  AND I DON'T CARE IF IM FEELING SORRY FOR MYSELF.  LET ME/.

Thursday, October 09, 2003

great.  just great.  i'm sorry you people had to read that, it was supposed to be in the windings font, but that doesn't work.  i am not having a very good day so please don't even read this.  i just watched er and now im even more depressed.  i said to my boyfriend, and they better not say that she's gonna die in a year, and he said yeah well they always have to make things look worse for tv, well they freakin said that "she is going to unfortunatly have a slow and horrible death."  it's not fair.  i cant stop crying right now and yes i am feeling very sorry for myself.  i feel like i will never lead a normal life again, and i am afraid of having a slow and horrible death.  im afraid of dying period. 

 

I HATE THIS WORLD.

Saturday, October 11, 2003

I guess you can say I'm just in a gray kinda mood.  Today and yesterday.  It all started with that stupid ER episode.  Don't get me wrong I love the show but of course that episode really and I mean really upset me.  And I'm sure it probably made others feel the same way, especially if they are newly diagnosed with the disease.  I was diagnosed in May and the show scared the shit outta me.  I've been pretty depressed ever since, but what can you do.  Also, just awhile ago I opened a piece of mail saying I was declined for house insurance.  I kinda knew that they wouldn't approve me but still, it hurts.  It's a big dissapointment.  Again, what can you do?!  I really have nothing to say right now, I'm sooooooooo tired but just cannot fall asleep, last night I was up until 4:30 am and awake at 11:30.  I know that's 7hours sleep but it's really not enough for me these days.  Sleep is something I always loved, it's probably the thing I like to do best, seriously, but I need more than 7 hrs lately.  Wes is going hunting tomorrow and I'm going to my grandpa's camp for Thanksgiving.  I'm not really in the mood to do anything but I know if I just stay at home I'd be more depressed and bored.  I really hope they get there moose this weekend, I hate hunting season.  The weather here is very weird right now too, it's supposed to be pretty hot tomorrow and I don't think there use to hunting in warm weather.  Every time I went, we froze so it should be a weird season.  If it stays like this, which in Canada....you never know.

Monday, October 13, 2003

happy thanxgiving!

This weekend was pretty cool.  On Saturday, we went to camp and it was so nice out it felt like summer again.  I had a pretty good time, I just wished more of my cousins would have been there.  I ended up hanging around my 7 yr old cousin Dylan and my other cousin's boyfriend most of the day...but we still had a blast.  I love going there.  I'll probably spend some time there this winter because my dad just bought another snowmachine, so me and Wes can take the other one and boot around on that.  My aunt Gail is down from London and yesterday we went to the casino for a few hours, blew our cash then went back to my mom's and had a few drinks.  Today is monday.  Wes is hunting again, but around 4 o'clock were going to his parents for thanksgiving dinner.  I hope we have an alright time.  Anyway, I gotta go have a shower and get ready because I'm sure he'll be home soon.

Thursday, October 16, 2003

It's thursday.  I watched ER but of course it was a repeat so I am excited to see next week if they have anything about that girl with pph or not.  Didn't do much today, actually I didn't do much all week.  I have been so tired. I'm not sure if it really has to do with pph I think it just might be my own fault.  Since not working, I've been staying up extremely late at night and sleeping in till about 1pm.  I hate that.  I honestly do.  By the time I'm ready in the day, Wes is just getting home from work and alot of the times supper isn't even ready for him yet.  I do feel bad and I do have to change my ways.  Tomorrow, I'm setting my alarm for 10:00 (and I know that's not the earliest but it's a start) getting up and doing the things I have to do.  I am going shopping with my mom when she's done work.  I need to pick up some groceries and I feel like spending money on myself so I'll see what I can do.

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