Its almost been 10 months since my transplant and I can still recall EVERYTHING about that day and almost up to 2 months after. ITs been such a crazy year. I had to update a friend I hadnt seen since the last year of highschool and it went something like this " umm ive graduated college, but i got really sick , I got a lung transplant, umm ya..and now imback at school" and they went what!?? its funny how it fits into sentences now.." oh ya i just got a lung transplant in feburary, im good!" its like it was nothing when in reality it was everything. I remember sitting in my parents basement imaging what it would be like to get the call and then to be able to run again and jump up and down and i couldnt quite figure it out, I couldnt see it and then it happened and I can run and jump up and down and run up the stairs in my house. Yes I have rejection and trust me I am SO scared about it. Its onlyu grade 1 which means they dont even treat it at this point but just the thought of having to go through all that again , well it honestly turns my stomach.
If I had to I would but I never want to have to again.
Ive learned alot about myself however. I can do better public speaking then I could have ever had a year ago. That might be because Im so much older than everyone at college now and also Im not afraid of it, Ive been through so much now its like public speaking?? whats the big deal...ya i still mess up words and say "um " alot more than I should be honestly its been an eye opener.
I know what I like and what I dont and Ive started to actually defend myself and say what I want, Im sick of being walked all over. I know who my friends are, who actually care I exist. I know who loves me and who would have just sent a card if I had died. It opens your eyes.
Its also funny to be in a class with people who all want to be in the health field and realise more than half of them have no idea what nurses or other health care professionals do...if you dont like blood, or bodily fluid your in the wrong profession lol , or how everything is always looked at as it will work out. Its just maturity I guess, they havent seen or understand death yet. They dont understand that when people are sick sometimes they dont realise it and they also dont understand that not everyone wants to make it..some people will choose not to get help or in the CF idea....not get a transplant..and theres nothing wrong with that, its personal. They just cant understand it...to them your the sick person....and its funny for me to be in the position now where Im suppose to be helping the "labelled sick person"...what if they dont want your help> lol one of the first questions in my textbook was " Pretend you have a Chronic Illness and that your Dieing , how would you feel?" hahahhaa come on? is that irony or what.i was like " oooo hmmm i wonder how that feels can I just play back my life? its funny.
I realise what I believe in and how getting here has helped me. Im ready for life..finally.. I never knew people could breathe this well.. and its insane..it really is...i hope every CF gets to feel like this someday.... cause we deserve it.
Its Christmas and Im alive , thank you god, thank you angels, thank you donor. thank you doctors, thank you nurses, thank you to everyone. Life is a gift.
Wednesday, December 7, 2011
Friday, October 7, 2011
New Post, New Rant
So yes im still here, VERY busy, but still breathing great and telling my donor thank you everyday. However, this is the first time in a while that I have a long rant....sorry be prepared, I need to vent!
Yesterday I had my Health Care in Canada Delivery course. The main purpose of this course to to learn "compassion" for patients, there families, and to know how the health system in ontario works. Funny for me to be on the otherside of the picture for once. HOWEVER, yesterday started out ok....and then the teacher started talking about how some lady in the states just got 2 hand transplants and IT WORKED. That was ok sounded kool you know, then they started talking about face transplants and it went from being informative to COMPLETELY sicking. They (my teacher included)started googling face transplants and then making fun of all these people and what they looked like, then started making fun of some of them that have rejection. I was so upset I was sitting in class trying to either not yell or cry...because the only thing i was thinknig of was all the crap I went through and what those people have gone through and theres all these people MAKING fun of them. What really made me aangery is that my teacher knows I've had a transplant . I was so disgusted, all the people in my class are going into healthcare and that is COMPASSION? I found it ironic that this happened in the only class where compassion is the main thing.
Not to mention what thehell was my teacher thinking? I'm still debating emailing him, because its a 3 h class and I walked out before 1 h of it was up, it was disgusting. Who makes fun of someone that needed that..or they were looking at before and after pictures and saying " well they looked better before " haha, SICK disgusting, wrong..ignorant. I couldnt believe it.
Me and my partner have now decided were doing our presentation on transplant...and im putting some pictires of mine into the powerpoint. Maybe that will stock them. It just made me upset because Ive had people say to me..."man you've put on weight" one person said not to me, but someone I know " man she really has packed on the pounds she better go for a run" ...and that was rude..
Yes I have put on weight, but I also am still on a high dose of predisonie because of rejection, I also have highblood pressure and the pills they put me on make me have huge water retention. I look puffy no matter what..BUT IM ALIVE, SO SCREW OFF to the people that want to say stuff like that..its just hurtful.
Yesterday I had my Health Care in Canada Delivery course. The main purpose of this course to to learn "compassion" for patients, there families, and to know how the health system in ontario works. Funny for me to be on the otherside of the picture for once. HOWEVER, yesterday started out ok....and then the teacher started talking about how some lady in the states just got 2 hand transplants and IT WORKED. That was ok sounded kool you know, then they started talking about face transplants and it went from being informative to COMPLETELY sicking. They (my teacher included)started googling face transplants and then making fun of all these people and what they looked like, then started making fun of some of them that have rejection. I was so upset I was sitting in class trying to either not yell or cry...because the only thing i was thinknig of was all the crap I went through and what those people have gone through and theres all these people MAKING fun of them. What really made me aangery is that my teacher knows I've had a transplant . I was so disgusted, all the people in my class are going into healthcare and that is COMPASSION? I found it ironic that this happened in the only class where compassion is the main thing.
Not to mention what thehell was my teacher thinking? I'm still debating emailing him, because its a 3 h class and I walked out before 1 h of it was up, it was disgusting. Who makes fun of someone that needed that..or they were looking at before and after pictures and saying " well they looked better before " haha, SICK disgusting, wrong..ignorant. I couldnt believe it.
Me and my partner have now decided were doing our presentation on transplant...and im putting some pictires of mine into the powerpoint. Maybe that will stock them. It just made me upset because Ive had people say to me..."man you've put on weight" one person said not to me, but someone I know " man she really has packed on the pounds she better go for a run" ...and that was rude..
Yes I have put on weight, but I also am still on a high dose of predisonie because of rejection, I also have highblood pressure and the pills they put me on make me have huge water retention. I look puffy no matter what..BUT IM ALIVE, SO SCREW OFF to the people that want to say stuff like that..its just hurtful.
Friday, September 9, 2011
School Time and all that jazzz
Soo back to school for pre health. Honestly I love it..it feels like what i was suppose to be doing all the time. I guess it doesnt really feel like work cause im interested in it. All the other times ive been in school homework has been soooo boring..and yes some of these classes are a little boring..but I do the work and I get it done fast cause this is the path i want to be on..i want to be a nurse. i might still go for RN. Appartently the RN course is going to be in Barrie next year so instead of going two years in barrie..two years at York in Toronto it woudl all be here...sooo we will see..either that or just RPN I dont know guess it just depends how everything falls.
I also applied for a receptionist job at a Youth Services Group in Barrie. Its only about 15 h a week and all in the evening..which would be great because I have classes till 2 in the afternoon. If i get the job Im gonna tell OSAP that I dont want it now, Id rather be able to work and save money that way then get into huge debt with OSAP and to be honest at this point I need maybe a thousand dollars..OSAP wants to give me 5 thousand....which I dont need..and well ill just end up paying interest on money i dont even want.
Also i have rejection...grade 1 acute..so its not bad but i want them to figure it out my spriometery has been done and yesterday they called and told me my liver is acting up so I might havfe to go see a GI doc soon.
thats basically it...<3 u guys
I also applied for a receptionist job at a Youth Services Group in Barrie. Its only about 15 h a week and all in the evening..which would be great because I have classes till 2 in the afternoon. If i get the job Im gonna tell OSAP that I dont want it now, Id rather be able to work and save money that way then get into huge debt with OSAP and to be honest at this point I need maybe a thousand dollars..OSAP wants to give me 5 thousand....which I dont need..and well ill just end up paying interest on money i dont even want.
Also i have rejection...grade 1 acute..so its not bad but i want them to figure it out my spriometery has been done and yesterday they called and told me my liver is acting up so I might havfe to go see a GI doc soon.
thats basically it...<3 u guys
Wednesday, August 3, 2011
Update time
So life has been so busy. SO busy that I havent been on here in forever.
So News Flash Im crying right now. Ya ....emotional crisis. Im just catching up on everyone and hearing bad news about people and dealing with crap side effects myself..and YES im sooo happy im alive dont get me wrong..but u get in that mood where its like ..what the heck did I do? ... did i rob a bank, do i rob old people or steal candy from children...NO ..sooo WHY does this life have to be so hard. YES self pity moment.
So i have been having side effects. Puffy..puffy..puffy. ok, then my whole body goes BRIGHT SUN BURN RED. Appartently thats a side effect of too much cyclo. Sick to my stomach. Hand cramps that left me crying..., leg cramps doing the same thing.., i wore sunblock sooo much..like friggin 60 and re applied a million times...wore layers of clothing..a hat..sunglasses..and i still burnt....frig. and my wonderful female probs...suppose to see a gyno in toronto..but well they havent gotten aroud to that...grr. ....i could keep going but i wont... would i get transplant again..YES. just..frig....why is everything so hard. They have offically wiped my immunesystem out a couple times now...and its scary. they called me and said..the clinic that is " ummm ya...soo u have no immunesytem right now, stay away from sick people, if u feel sick so straight to emerg" ...ya omg! Im coughing...i think im might actually have lung infection im not sure.. but then i was taken off my antirejection meds or most of them for july because i have almost no white blood cells left in my body. sooo my spirometer readings are lower and well in my head theres flashing be RED words of REJECTION. Im keeping track of my numbers if there still low tomorrow i need to call and figure this out. OH ps i also have high blood pressure now...and was getting killer headaches daily..i was popping tyentol like candy again....heres to hoping that stays away....SOO thats my rant...im freaking out about friends.....scared for myself...and am living in a self pity bubble for today....ya....
Other then that life has been good... im glad im alive...just sometimes u just want to scream into your pillow..why me?
So News Flash Im crying right now. Ya ....emotional crisis. Im just catching up on everyone and hearing bad news about people and dealing with crap side effects myself..and YES im sooo happy im alive dont get me wrong..but u get in that mood where its like ..what the heck did I do? ... did i rob a bank, do i rob old people or steal candy from children...NO ..sooo WHY does this life have to be so hard. YES self pity moment.
So i have been having side effects. Puffy..puffy..puffy. ok, then my whole body goes BRIGHT SUN BURN RED. Appartently thats a side effect of too much cyclo. Sick to my stomach. Hand cramps that left me crying..., leg cramps doing the same thing.., i wore sunblock sooo much..like friggin 60 and re applied a million times...wore layers of clothing..a hat..sunglasses..and i still burnt....frig. and my wonderful female probs...suppose to see a gyno in toronto..but well they havent gotten aroud to that...grr. ....i could keep going but i wont... would i get transplant again..YES. just..frig....why is everything so hard. They have offically wiped my immunesystem out a couple times now...and its scary. they called me and said..the clinic that is " ummm ya...soo u have no immunesytem right now, stay away from sick people, if u feel sick so straight to emerg" ...ya omg! Im coughing...i think im might actually have lung infection im not sure.. but then i was taken off my antirejection meds or most of them for july because i have almost no white blood cells left in my body. sooo my spirometer readings are lower and well in my head theres flashing be RED words of REJECTION. Im keeping track of my numbers if there still low tomorrow i need to call and figure this out. OH ps i also have high blood pressure now...and was getting killer headaches daily..i was popping tyentol like candy again....heres to hoping that stays away....SOO thats my rant...im freaking out about friends.....scared for myself...and am living in a self pity bubble for today....ya....
Other then that life has been good... im glad im alive...just sometimes u just want to scream into your pillow..why me?
Sunday, May 8, 2011
Its been a while again
I realise life has gotten busy again. I love it but at the same time i miss keeping up with all my cfers. I guess the online community was such a huge outlet for me over the past 2 or 3 years that now that I can go out and do stuff again its weird not knowing what is going on with everyone. People have gotten there transplants and I havent even known. WEIRD.
Today my body is having a weird day. i woke up with a fever and achy. My leg keeps twitching to which is really, really annoying. My blood sugar has also just spiked to 31 my highest record ever. not so good. So i just pumped myself full of more insluin hoping my BS goes down.
Again as Im typing m realising how after a full day of trying to keep everyone happy, friends, family, etc. and keep my social life balanced that im truely exhausted. and honesty im going to bed right now and just going to sleep..as tomorrow is just as busy. ..love all of u ..miss u
Today my body is having a weird day. i woke up with a fever and achy. My leg keeps twitching to which is really, really annoying. My blood sugar has also just spiked to 31 my highest record ever. not so good. So i just pumped myself full of more insluin hoping my BS goes down.
Again as Im typing m realising how after a full day of trying to keep everyone happy, friends, family, etc. and keep my social life balanced that im truely exhausted. and honesty im going to bed right now and just going to sleep..as tomorrow is just as busy. ..love all of u ..miss u
Wednesday, April 27, 2011
Update TIME
So WOW it seems like forever ago that the transplant happened..realistically it hasnt been that long. I guess its just all the changes that has happened that makes it seem longer.
My sister bought a house which I am moving in with her in june. My grandparents who we thought would never move are downsizing..sooo more moving around the same time. My brother is married and moved into his house in petawawa ..ya thats spelt wrong ill fix it later) so hes gone and all his stuff is out of my parents house. Hes also on his honeymoon this week with his wife..soo hopefully there having fun in punta cana. My grandma had cancer but after her kidney was taken out she is alright. My uncle and aunt are still jobless but hopefully that is fixed soon.
I have an AMAZING boyfriend. Seriously! Hes amazing, none of this health stuff seems to freak him out to much, which is amazing! He also spoils me to all heck :) and hes sweet and caring ..and trust me I could use this whole blog just talking about him lol :) im so lucky to have him. Its strangle if someone told me right out of transplant a couple weeks out that I would find someone and be happy and have a boyfried I would have laughed at them and told them they were wrong.
Im going back to school in the fall I think. I got into prehealth science so I think I'm giong to do it. Ill regret it if I dont, either that or work if I find a job I actaully would want.
I went RUNNING THIS WEEK. LIke actually RUNNING. I have one week of rehab left then im done and I dont no what I am going to do with all the spare time lol. Scrapbook? I might actually go down to a couple of the walk in clinics or my local doctors office and see if they well let me do volunteering there till im "allowed" to work again. At least then my resume doesnt look as bad. I think its a good deal , i do all there filing for free..who likes filing lol come on.
I have such an amazing family and friend.s...im blessed. Maybe this whole thing was crazy..but i have some amazing people that love me and im lucky because of it.
OHH and i got in the local paper! Ill scan it and post on here later ..FRONT PAGE BABY>lol
Monday, March 28, 2011
Its 3am why am I awake?
Its a very good question and there are numerous reasons. 1 this week is giong to be stressful. 4 Days in Toronto is enough to make me go loopy, but I wont complain Im glad Im here and breathing, the end.
I had a huge craving for salad , seriously sooo I just basically dumped my fridge into a bowl and u have Allisons Crazy Chiense-ish Salad
Umm add
Button mushrooms
shitiki mushrooms
cucumber
bean sprouts
random lettuce types
green onion
salt
Left over chicken beast
asian seasme seed dressing
=
Yum
K ill try and sleep now
:) toronto is going to be long tomorrow
I had a huge craving for salad , seriously sooo I just basically dumped my fridge into a bowl and u have Allisons Crazy Chiense-ish Salad
Umm add
Button mushrooms
shitiki mushrooms
cucumber
bean sprouts
random lettuce types
green onion
salt
Left over chicken beast
asian seasme seed dressing
=
Yum
K ill try and sleep now
:) toronto is going to be long tomorrow
Tuesday, March 22, 2011
Wow
I don't know how to say Thank you. I feel I need to do something. This past week I've had to urge to just go out and LIVE. It doesn't matter what I am doing as long as I am doing something. Sadly I must admit I spent an hour last night trying to remember how to crochet lol this may sound boring, but guess what? I remembered how to do it and accomplished my goal :)
I've spent so long not being able to do anything the feeling of being able to go bowling, walk down the street, dance, go to the movies , WALK TO A CAR. I don't know how to describe this to anyone that hasn't gone through it. I go to exercise and it's so much easier than before I just keep going even when it starts to hurt and my muscles start to ache.
I am joining the transplant dragon boat team next year, I'd join this year but it's just way to early. Complications can still happen, this is something I remembered this morning when I woke up at 5:30am with aching knees again, I'm almost afraid of telling this to someone because I know its arthritis and its related to CF. I also know if I say anything the doctors are just going to send me to an rheumatlogist. I'm glad there starting to learn more about this werid aspect of cf. Appartently it attacks the big joints, I believe this because my knees KILL when I get an "attack". Also the paper I was reading mentioned that there could be a sudden on-set of back pain, this is what I have been dealing with since transplant. The team thought it was my kidneys but NOPE my kidneys are fantastic, which leads me to think this is what may be causing it. I also woke up with a fever. Not the 37.5 degree fever that the transplant team has drilled into me is BAD and if it happens I have to call because it could mean rejection. No I woke up feeling hot and it was 35 , no biggie normal...now and hour later its 36. 3...soo going up..but still not bad. Also cf arthritis appartently makes you have a fever. OHH cf how I hate you.
On the upside I've memorized all my new medication. All 22+ bottles of it lol.
Ok the point of this blog was not to complain or ramble about health yet here I am doing it again.
I keep meaning to make a new blog post but I think I'm going to end up crying If I try to express how Im actually feeling and I dont no if I want everyone seeing that yet lol.
Postive- I have a new boyfriend :) and I'm so happy about it I dont no what to say. If you told me out of transplant in a month I'd be biking 5km in rehab and spending time with a amazing guy i would have probably cursed and you and told you to leave me alone lol It seems like forever ago that everything happened, yet I still have stitches scars healing and muscle mass building back up. But it seems like forever, or like some weird horrible dream I just woke up from.
My lungs feel like mine now. I know that sounds like an odd pharse but when I first woke up they didn't, they literally felt like someone else's, I felt not like myself. I felt wrong to be honest. I don't know if every transplant patient goes through this but I was well aware that those organs were not mine and to begin with I wasn't ok with it. I thought oh my god have I broken some rule , some rule your not suppose to break, at one point I told my mom i thought I had 2 souls or that I didnt have a soul anymore. This clearly had alot to do with the medication, at the same time I was being truthful, I new someone had died and here I was "stealing" away apart of them. I'm glad this feeling has gone away. It was scary. Though i'll be honest we dont understand everything. Im convinced my donor was a man and maybe 35, dont ask me why...I just woke up thinking that. I also think he might have been mexican. Again no clue why.. i just woke up thinking it. Maybe Im wrong , maybe at some point Ill find out it was a 16 year old girl..but I dont think so...no my food preferances havent changed like some people say and I dont have the urge to go do something that I was completely against before, but somethings are different. My body isnt my own anymore and the team keeps saying that over and over, "this is ur new body we dont no how its going to react to anything", scary thought lol.
Monday, March 14, 2011
So now that things have started to settle, or at least nothing else has happened yet to scare the uber crap out of me I figured now was the time to explain this whole experience, before I forget the major parts.
February 16th 2011 I went to bed determined to be “positive” and stop complaining about my life and that it would soon change for the better, that change that I had been waiting for , for 4 almost 5 months, happened about 4 ½ hours later. At around 430 am one of my nurses (Karen) came in and said “hunny they got you lungs”, honestly after that it is kind of blurry I think I went into complete shock. I remember calling alysse , poor alysse 430 in the morning getting me calling her freaking out. I just remember saying something like “ I got lungs, there giving me lungs”....I’m not even sure how the phone call ended cause I was so out of it. I also called my sister-in-law and apparently scared the crap out of her. I think I called a bunch of other people to, if I did I’m sorry haha I honestly can’t even remember. I also know I emailed everyone on facebook.
I barely remember packing stuff and how I somehow got to Toronto General, from St. Mikes. I remember the 2 transfer people asking me some questions but I was sort of in a daze. I didn’t realise that it took a couple hours for my family to show up, I’m not sure if I was just staring at the wall for a couple hours, I just can’t remember. I know I got an x-ray at some point and blood work but I can’t remember that either. I remember my family getting there and me not being able to eat. I remember having to take anti-rejection pills just in case the surgery happened and Iv meds being started. I remember just sitting around and waiting for hours hoping and honestly thinking “this surgery isn’t even going to happen”. I kept expecting them to walk in and call the whole thing off, but nope at about quarter to 3 pm the nurse walked in and said it was a go!
Total shock. Plus my brother was like 10 min off from the hospital so I had to call him and say that he wasn’t going to make it before surgery and that i’d see him after. Then I said bye to everyone and everyone was crying. I got on the stretcher and talked my surgeon (Dr. Andrew Pierre) into taking pictures of my old and new lungs! THANK U DOCTOR Then Colleen went down the elevator with me until she wasn’t allowed to go any further and we said good bye and she went one way and I went the other. Into the OR. It was kind of intimidating. People whacking around metal and dropping stuff isn’t exactly comforting when you know in a short period of time you’re going to be out of it and they’re going to be slicing you open like a black forest ham haha :P
Anyways I met the anaesthesiologist; honestly I can’t remember her name. Anyways she said they needed to put a line into my artery, so they duck taped (no joke) my entire arm to the metal OR table and then froze my arm then went on their way of trying to get blood from my artery. Apparently it didn’t work, so then they taped my other arm to the OR table and did the same on the other side. So at this point I couldn’t move and starting inwardly freaking out. And that’s when they decided maybe they should put me out. SO BAM mask was over my face, couple big breathes and all I remember is a bright light in my face.
I kind of remember waking up, but not completely. I remember people crying? I think. There was a lot of crying and family members upset. I mean I was hooked up to pretty much every machine you can be hooked up too. Breathing vent, feeding tube, chest tubes, IVs, catheter, pain meds, plus all the beeping machines to make sure I was still alive (gotta love it) add in a blood pressure cuff, o2 stat monitor stuck to your finger and a pain pump button and u got me, OOO and I forgot they also had white SUPER tight socks that went up to my thighs on to kept you from getting blood clots, with blood pressure socks that went over top and never stopped moving.
I was really out of it and the whole breathing tube down my throat, plus feeding tube and what else types of tubes down my throat it sucked. I’m not good at not being able to talk. I remember seeing people, talking to people but nothing is in the right order.
I remember having to get up and walk, though I didn’t realise it was only 16h post surgery. I was dizzy and drugged up, and getting up was just about the hardest thing I have ever done. I do remember saying something about rugby, like “this is nothing I played rugby”; I remember feeling really really really cold on my chest. And whoever said that you can breathe fantastic right out of surgery is a complete moron. I woke up and thought something heavy was sitting on my chest and thinking OUCH, where’s my pain pump? It wasn’t what I expected really. I didn’t realise you have to re teach yourself to cough because you just can’t cough anymore; you also have to teach yourself to breathe again. I couldn’t tell if I was breathing or not. I kept asking if I was breathing. “Am I breathing right you guys?”
My breathing was messed up though, I sounded like an old grandpa, very crackly. See you have to cough up all the surgical fluid in the lungs so you can breathe properly, but when you can’t cough anymore its really really really hard. Add in a huge incision and coughing just plain hurts! THANK YOU MORPHINE. Apparently my new lungs came with an infection, poor donor was sick before they passed away and I got there lung infection passed to me. So I was having a lot of problems breathing so they decided they needed to put the breathing tube back in and back on to the vent. I just remember asking “am I going to remember this?” and they said “No”, gave me a shot of something and I was out.
Then the tube was back in and I was back to being drugged up. Colleen said it was hours later that I woke up, though I thought it was just an hour or so later...it was about 8 hours. I remember Colleen being there a lot, though hours and days meant nothing to me, when I found out I’d already been in the hospital for a week I was in shock. I had been that out of it. They give you a pain pump and thank god for it, every time they moved me I’d just hit that and feel nothing. Honestly I didn’t feel much I numbed it all out. It got to a point where I was getting hot and itchy and apparently that’s signs for morphine overdose so I stopped using it as much.
The nurses in the ICU are amazing. I mean they were balancing my 8 IV pumps; usually one is a pain, but 8...insane, all meds going at different rates and has to be mixed certain ways. They also basically have to treat you like a baby and do everything for you, even though you don’t want them to. Or I didn’t anyways. They were good though, even with all the tubes they let me wash my mouth out every day, sort of brush my teeth, they tried to wash my hair...but I don’t want to talk about it lol it was a bad experience and I actually yelled at a nurse VIA Paper and clipboard. Let’s just say that night I was coherent and what she was doing made no sense to me, but I’ll stop there. They are amazing, loud and I seriously think after hearing so many of them freak about their break times that they might need an extra break every now and again. It’s funny because I was really drugged but I remember some of what was going on. I know I watched movies in the ICU, though I can’t tell you which ones they were, no clue. Also one of my nurses, John put a radio in my room and put it on 90s and 80s music lol , sooo that’s what I was listening to for a while. I am happy I slept most of the time in the ICU, it wasn’t an experience I think someone wants to remember. I mean having someone suction out your lungs while your awake, not kool, not a fun experience. Though I guess it had to be done.
Anyways I was very dizzy after surgery and I didn’t have any spatial sense. It felt like I was on a tilt-a -whirl all the time, I seriously thought my hospital bed was moving. It felt like spinning. It was crazy. But given I was on 8 IV pumps, all pumping liquid into my body at the same time, something weird had to happen. I do remember everyday something new disappearing. An IV pump here and there, an iv sight, stuff got better slowly.
I’ve realized that I really hate people looking after me. That I love being clean so if I can’t shower or even have a bed bath I get really cranky and being able to see the bathroom 3 feet away but not being able to use it is just annoying. Chest tubes suck. Because there on both sides of your bed so before you go anywhere 4 chest tubes have to be put somewhere, add in the 8 IV pumps, oxygen , and blood pressure socks and trust me you’re not going anywhere fast. I guess that was my problem when I got to the step down unit after getting out of the ICU. I didn’t know what to do. You see with CF there was always a plan, you were never just sitting around, with transplant there was no plan, the plan was you were suppose to sleep, eat and walk around and that was it. Except no one said this so I didn’t know if I was supposed to be doing something, so I kept asking “what am I suppose to do”, no one really ever answered that question lol.
I remember having to argue to get my CF enzymes when they put me on real food. Take a CF patient, who can’t digestive food without pills, put her on a liquid diet for a week without pills, put back to food but still without pills, and mess up her diabetes and you have Allison not such a happy camper. But I argued and got my pills back, at this point my stomach was killing me because of not having my pills for that long and them still trying to feed me. OUCH. But they just kept saying “that isn’t our main concern”, soo ok true guess making sure my lungs work is more important than food. I was dizzy the day they sent me over to step down unit, though and I found out later it was because I had been complaining my stomach hurt so apparently I had an ultrasound...totally don’t remember that. I hadn’t been fed in 2 days that was why I was dizzy. I also ate tons of Ice chips, I couldn’t get enough.
The step-down unit was different. In the ICU there were always 2 nurses, one for each patient and someone was always there, step-down there was 1 nurse for two patients and you had some freedom. I was still in a glassed in hospital room, which I found out I hate haha, no privacy with that one, not like I cared at that point. Step-down confused me because there was no layout of how to get from step-down to the transplant floor. You just had to wait and see if they docs thought you were healthy enough. My day consisted of getting blood taken before 630 am, going back to sleep for a bit, being woken up at 730 when the shifts switched over and the nurse coming in to do vitals. Then I’d pop my meal of pills lol, then eat breaky, wait for the docs to do rounds, and then that was it for the day. I’d wait for my family to show up, or id go back to sleep for a bit, because you see step-down doesn’t have TV so I was literally staring at the wall.
I had trouble eating after surgery. I chocked a lot, which I never do but I guess with my throat being so irritated it just happened. Lots of pillow holding in these weeks, 4 chest tubes are uncomfortable, you can’t lie on your sides at all so you constantly on your back, I also found sitting for certain periods of time in that chair they give you, hurts after a while. Step-down was basically boring for me, I just wanted to get downstairs and do stuff lol. In step-down they took 2 of my chest tubes out and I was SO happy. Then they told me I had a hematoma in my right lung,... so blood in the chest cavity not so kool, so I had many x-rays, ct scans and I even had a bronch. During all of this I was put down to the transplant floor 7; where they decided that I did have blood be hide my right lung and that because of all the old CF germs and my old lungs popping so much that they had to put another chest tube in the front of my chest. I wasn’t thrilled. So one of my docs in my room, got a big needle frozen the front of my chest and then stuck another tube in the front of my chest, right next to my port :P It still hurt, he missed a bit, it’s not an experience I would like to relive anytime soon. Other than that 7 was boring too, I guess entertainment isn’t anyone’s main concern and it makes sense. My first roommate was slightly irritating. Given she was a very old lady, but she was making herself sick. She wouldn’t walk around so then because she was just sitting in bed all the time she was getting weaker and weaker, and then she didn’t like using her call bell, instead she’d just start yelling “NURSE, NURSE” over and over again until someone came...her doing this at 2 am didn’t make me like her all too much.
I was really happy when she got sent home. My next roommate was a couple years older than me, had also gotten a lung transplant in the past but was having other organ issues so that’s why she needed to come in. But she clearly just like me had been in the hospital a million times and had packed everything she needed. You can tell “professional patients” when you see them lol. Your curtains are closed to how you want them, you hook up your tv and phone in a matter of minutes of getting into the room, you have earphones for the tv, you also have a suitcase with extra pillow, blanket, sweaters, extra food, credit cards, cell phone and if you have one, a lap top. You also know how to talk to doctors. So when I saw this women walk in with all this I laughed and new we’d be good roommates. We both liked our own privacy, quiet, and didn’t get in each other’s way.
Hmm other than that 2 weeks later the docs said I was doing “incredibly well” minus that first infection I got and the blood behide my lung I was great. So they took all the chest tubes out and for a day or two I had my self med classes to make sure I didn’t overdose or not understand my meds completely and then randomly on a Friday they walked in and said “ ya you can go home today”, which was funny cause I didn’t have a coat or anything so they actually let me stay an extra day till my parents could get all my stuff.
The first time I got home I almost fell on my face walking into the house. I forgot all about stairs. I couldn’t do stairs at all! You’d be surprised how much muscle mass you can lose in the hospital in 2 weeks. Other than that I got all my staples out, I check my temp and everything ..everyday , I have enough hand sanitizer to freak out any healthy person and I own some med masks and I have been wearing quiet a lot of because people are just gross and sick and I’d rather not getting some scary virus right after all this. Without an immune system is scary, but I do think its funny that everyone is so scared of prednisone, I’ve been on this med for 5 years, my immune system has been low for years..soo I guess I’m not as scared just because I’ve been doing this so long already. I also had to get my medic alert bracelet haha there going to have fun reading that one. I have no idea how they’re going to fit all that stuff on there. It took me forever to do it. “Cystic fibrosis, Cystic fibrosis related diabetes, cystic fibrosis related liver disease, immunosuppressed, double lung transplant” haha try fitting that on a small chain...plus I needed to tell them all my meds...funny. I also have a t-shirt coming in the mail that says “ recycled parts, transplant recipient” I can’t wait.
I know there’s still going to be bumps in the road, but so far I don’t have rejection or infection so I can’t complain. Life is good. I can’t believe all this actually worked out for the better; I honestly didn’t think it was going too. That transplant came just when I needed it. When I was starting to give up and was running out of energy to fight it anymore. I had months left, not a year. My lungs were just too weak and damaged and they collapsed all the time. I’m happy that someone out there signed their donor card and they saved me
February 16th 2011 I went to bed determined to be “positive” and stop complaining about my life and that it would soon change for the better, that change that I had been waiting for , for 4 almost 5 months, happened about 4 ½ hours later. At around 430 am one of my nurses (Karen) came in and said “hunny they got you lungs”, honestly after that it is kind of blurry I think I went into complete shock. I remember calling alysse , poor alysse 430 in the morning getting me calling her freaking out. I just remember saying something like “ I got lungs, there giving me lungs”....I’m not even sure how the phone call ended cause I was so out of it. I also called my sister-in-law and apparently scared the crap out of her. I think I called a bunch of other people to, if I did I’m sorry haha I honestly can’t even remember. I also know I emailed everyone on facebook.
I barely remember packing stuff and how I somehow got to Toronto General, from St. Mikes. I remember the 2 transfer people asking me some questions but I was sort of in a daze. I didn’t realise that it took a couple hours for my family to show up, I’m not sure if I was just staring at the wall for a couple hours, I just can’t remember. I know I got an x-ray at some point and blood work but I can’t remember that either. I remember my family getting there and me not being able to eat. I remember having to take anti-rejection pills just in case the surgery happened and Iv meds being started. I remember just sitting around and waiting for hours hoping and honestly thinking “this surgery isn’t even going to happen”. I kept expecting them to walk in and call the whole thing off, but nope at about quarter to 3 pm the nurse walked in and said it was a go!
Total shock. Plus my brother was like 10 min off from the hospital so I had to call him and say that he wasn’t going to make it before surgery and that i’d see him after. Then I said bye to everyone and everyone was crying. I got on the stretcher and talked my surgeon (Dr. Andrew Pierre) into taking pictures of my old and new lungs! THANK U DOCTOR Then Colleen went down the elevator with me until she wasn’t allowed to go any further and we said good bye and she went one way and I went the other. Into the OR. It was kind of intimidating. People whacking around metal and dropping stuff isn’t exactly comforting when you know in a short period of time you’re going to be out of it and they’re going to be slicing you open like a black forest ham haha :P
Anyways I met the anaesthesiologist; honestly I can’t remember her name. Anyways she said they needed to put a line into my artery, so they duck taped (no joke) my entire arm to the metal OR table and then froze my arm then went on their way of trying to get blood from my artery. Apparently it didn’t work, so then they taped my other arm to the OR table and did the same on the other side. So at this point I couldn’t move and starting inwardly freaking out. And that’s when they decided maybe they should put me out. SO BAM mask was over my face, couple big breathes and all I remember is a bright light in my face.
I kind of remember waking up, but not completely. I remember people crying? I think. There was a lot of crying and family members upset. I mean I was hooked up to pretty much every machine you can be hooked up too. Breathing vent, feeding tube, chest tubes, IVs, catheter, pain meds, plus all the beeping machines to make sure I was still alive (gotta love it) add in a blood pressure cuff, o2 stat monitor stuck to your finger and a pain pump button and u got me, OOO and I forgot they also had white SUPER tight socks that went up to my thighs on to kept you from getting blood clots, with blood pressure socks that went over top and never stopped moving.
I was really out of it and the whole breathing tube down my throat, plus feeding tube and what else types of tubes down my throat it sucked. I’m not good at not being able to talk. I remember seeing people, talking to people but nothing is in the right order.
I remember having to get up and walk, though I didn’t realise it was only 16h post surgery. I was dizzy and drugged up, and getting up was just about the hardest thing I have ever done. I do remember saying something about rugby, like “this is nothing I played rugby”; I remember feeling really really really cold on my chest. And whoever said that you can breathe fantastic right out of surgery is a complete moron. I woke up and thought something heavy was sitting on my chest and thinking OUCH, where’s my pain pump? It wasn’t what I expected really. I didn’t realise you have to re teach yourself to cough because you just can’t cough anymore; you also have to teach yourself to breathe again. I couldn’t tell if I was breathing or not. I kept asking if I was breathing. “Am I breathing right you guys?”
My breathing was messed up though, I sounded like an old grandpa, very crackly. See you have to cough up all the surgical fluid in the lungs so you can breathe properly, but when you can’t cough anymore its really really really hard. Add in a huge incision and coughing just plain hurts! THANK YOU MORPHINE. Apparently my new lungs came with an infection, poor donor was sick before they passed away and I got there lung infection passed to me. So I was having a lot of problems breathing so they decided they needed to put the breathing tube back in and back on to the vent. I just remember asking “am I going to remember this?” and they said “No”, gave me a shot of something and I was out.
Then the tube was back in and I was back to being drugged up. Colleen said it was hours later that I woke up, though I thought it was just an hour or so later...it was about 8 hours. I remember Colleen being there a lot, though hours and days meant nothing to me, when I found out I’d already been in the hospital for a week I was in shock. I had been that out of it. They give you a pain pump and thank god for it, every time they moved me I’d just hit that and feel nothing. Honestly I didn’t feel much I numbed it all out. It got to a point where I was getting hot and itchy and apparently that’s signs for morphine overdose so I stopped using it as much.
The nurses in the ICU are amazing. I mean they were balancing my 8 IV pumps; usually one is a pain, but 8...insane, all meds going at different rates and has to be mixed certain ways. They also basically have to treat you like a baby and do everything for you, even though you don’t want them to. Or I didn’t anyways. They were good though, even with all the tubes they let me wash my mouth out every day, sort of brush my teeth, they tried to wash my hair...but I don’t want to talk about it lol it was a bad experience and I actually yelled at a nurse VIA Paper and clipboard. Let’s just say that night I was coherent and what she was doing made no sense to me, but I’ll stop there. They are amazing, loud and I seriously think after hearing so many of them freak about their break times that they might need an extra break every now and again. It’s funny because I was really drugged but I remember some of what was going on. I know I watched movies in the ICU, though I can’t tell you which ones they were, no clue. Also one of my nurses, John put a radio in my room and put it on 90s and 80s music lol , sooo that’s what I was listening to for a while. I am happy I slept most of the time in the ICU, it wasn’t an experience I think someone wants to remember. I mean having someone suction out your lungs while your awake, not kool, not a fun experience. Though I guess it had to be done.
Anyways I was very dizzy after surgery and I didn’t have any spatial sense. It felt like I was on a tilt-a -whirl all the time, I seriously thought my hospital bed was moving. It felt like spinning. It was crazy. But given I was on 8 IV pumps, all pumping liquid into my body at the same time, something weird had to happen. I do remember everyday something new disappearing. An IV pump here and there, an iv sight, stuff got better slowly.
I’ve realized that I really hate people looking after me. That I love being clean so if I can’t shower or even have a bed bath I get really cranky and being able to see the bathroom 3 feet away but not being able to use it is just annoying. Chest tubes suck. Because there on both sides of your bed so before you go anywhere 4 chest tubes have to be put somewhere, add in the 8 IV pumps, oxygen , and blood pressure socks and trust me you’re not going anywhere fast. I guess that was my problem when I got to the step down unit after getting out of the ICU. I didn’t know what to do. You see with CF there was always a plan, you were never just sitting around, with transplant there was no plan, the plan was you were suppose to sleep, eat and walk around and that was it. Except no one said this so I didn’t know if I was supposed to be doing something, so I kept asking “what am I suppose to do”, no one really ever answered that question lol.
I remember having to argue to get my CF enzymes when they put me on real food. Take a CF patient, who can’t digestive food without pills, put her on a liquid diet for a week without pills, put back to food but still without pills, and mess up her diabetes and you have Allison not such a happy camper. But I argued and got my pills back, at this point my stomach was killing me because of not having my pills for that long and them still trying to feed me. OUCH. But they just kept saying “that isn’t our main concern”, soo ok true guess making sure my lungs work is more important than food. I was dizzy the day they sent me over to step down unit, though and I found out later it was because I had been complaining my stomach hurt so apparently I had an ultrasound...totally don’t remember that. I hadn’t been fed in 2 days that was why I was dizzy. I also ate tons of Ice chips, I couldn’t get enough.
The step-down unit was different. In the ICU there were always 2 nurses, one for each patient and someone was always there, step-down there was 1 nurse for two patients and you had some freedom. I was still in a glassed in hospital room, which I found out I hate haha, no privacy with that one, not like I cared at that point. Step-down confused me because there was no layout of how to get from step-down to the transplant floor. You just had to wait and see if they docs thought you were healthy enough. My day consisted of getting blood taken before 630 am, going back to sleep for a bit, being woken up at 730 when the shifts switched over and the nurse coming in to do vitals. Then I’d pop my meal of pills lol, then eat breaky, wait for the docs to do rounds, and then that was it for the day. I’d wait for my family to show up, or id go back to sleep for a bit, because you see step-down doesn’t have TV so I was literally staring at the wall.
I had trouble eating after surgery. I chocked a lot, which I never do but I guess with my throat being so irritated it just happened. Lots of pillow holding in these weeks, 4 chest tubes are uncomfortable, you can’t lie on your sides at all so you constantly on your back, I also found sitting for certain periods of time in that chair they give you, hurts after a while. Step-down was basically boring for me, I just wanted to get downstairs and do stuff lol. In step-down they took 2 of my chest tubes out and I was SO happy. Then they told me I had a hematoma in my right lung,... so blood in the chest cavity not so kool, so I had many x-rays, ct scans and I even had a bronch. During all of this I was put down to the transplant floor 7; where they decided that I did have blood be hide my right lung and that because of all the old CF germs and my old lungs popping so much that they had to put another chest tube in the front of my chest. I wasn’t thrilled. So one of my docs in my room, got a big needle frozen the front of my chest and then stuck another tube in the front of my chest, right next to my port :P It still hurt, he missed a bit, it’s not an experience I would like to relive anytime soon. Other than that 7 was boring too, I guess entertainment isn’t anyone’s main concern and it makes sense. My first roommate was slightly irritating. Given she was a very old lady, but she was making herself sick. She wouldn’t walk around so then because she was just sitting in bed all the time she was getting weaker and weaker, and then she didn’t like using her call bell, instead she’d just start yelling “NURSE, NURSE” over and over again until someone came...her doing this at 2 am didn’t make me like her all too much.
I was really happy when she got sent home. My next roommate was a couple years older than me, had also gotten a lung transplant in the past but was having other organ issues so that’s why she needed to come in. But she clearly just like me had been in the hospital a million times and had packed everything she needed. You can tell “professional patients” when you see them lol. Your curtains are closed to how you want them, you hook up your tv and phone in a matter of minutes of getting into the room, you have earphones for the tv, you also have a suitcase with extra pillow, blanket, sweaters, extra food, credit cards, cell phone and if you have one, a lap top. You also know how to talk to doctors. So when I saw this women walk in with all this I laughed and new we’d be good roommates. We both liked our own privacy, quiet, and didn’t get in each other’s way.
Hmm other than that 2 weeks later the docs said I was doing “incredibly well” minus that first infection I got and the blood behide my lung I was great. So they took all the chest tubes out and for a day or two I had my self med classes to make sure I didn’t overdose or not understand my meds completely and then randomly on a Friday they walked in and said “ ya you can go home today”, which was funny cause I didn’t have a coat or anything so they actually let me stay an extra day till my parents could get all my stuff.
The first time I got home I almost fell on my face walking into the house. I forgot all about stairs. I couldn’t do stairs at all! You’d be surprised how much muscle mass you can lose in the hospital in 2 weeks. Other than that I got all my staples out, I check my temp and everything ..everyday , I have enough hand sanitizer to freak out any healthy person and I own some med masks and I have been wearing quiet a lot of because people are just gross and sick and I’d rather not getting some scary virus right after all this. Without an immune system is scary, but I do think its funny that everyone is so scared of prednisone, I’ve been on this med for 5 years, my immune system has been low for years..soo I guess I’m not as scared just because I’ve been doing this so long already. I also had to get my medic alert bracelet haha there going to have fun reading that one. I have no idea how they’re going to fit all that stuff on there. It took me forever to do it. “Cystic fibrosis, Cystic fibrosis related diabetes, cystic fibrosis related liver disease, immunosuppressed, double lung transplant” haha try fitting that on a small chain...plus I needed to tell them all my meds...funny. I also have a t-shirt coming in the mail that says “ recycled parts, transplant recipient” I can’t wait.
I know there’s still going to be bumps in the road, but so far I don’t have rejection or infection so I can’t complain. Life is good. I can’t believe all this actually worked out for the better; I honestly didn’t think it was going too. That transplant came just when I needed it. When I was starting to give up and was running out of energy to fight it anymore. I had months left, not a year. My lungs were just too weak and damaged and they collapsed all the time. I’m happy that someone out there signed their donor card and they saved me
Saturday, March 5, 2011
I GOT IT
On Feb 17. 2011 I recieved "the call". I was already admitted into St. Mikes hospital and I was asleep...as far as I can remember..which Ill admit isnt alot. My nurse came in and said "Hunny they got you lungs" ..and thats when I went off the deep end. I was packed, callin people sooo fast. I dont remember the drive over to TGH at all, seriously Im not sure how I ended up on the 7th floor in the waiting room haha i just cant remember. I remember hanging out with my family , getting dressed into a hospital gown and feeling like I was going to be sick. I was trying not to cry. I was in total shock..it was like OMG is this happening?? seriously??
kk ill finish this a bit later..its early i havent slept at all...gimme a couple hours and ill keep going
kk ill finish this a bit later..its early i havent slept at all...gimme a couple hours and ill keep going
Friday, February 11, 2011
Just a Big Downer
This past week or two weeks have sucked. Monday Jan 31 my lwft lung decided to pop the big one. It started with me going to phyiso in toronto, ending up in the ER when I got home to orillia, and by 9 oclock at night being druged out of my mind and having a chest tube inserted. Tuesday Feb 1, i was transfered to St. Mikes. Drugged up more and then them realising that my chest was already pretty inflated. They let me out Thursday...i guess...I cant really remember alot. I was on alot of morphine, codeine, and sleeping pills. I kinda wish they kept me in the hospital. I wasnt ready to leave and im seriously getting a lung infection. I dont no what they were thinking. I didnt get any physio when I was in the hospital .as kenneth was somehow busy both days? it made no sense..and they couldnt do physio on my collapsed side anyways. So i cant do PEP, I cant do clapping on that side, and my other side has my port so its hard to do phyiso at all. My blood sugars are starting to go high. And I no there isnt any beds...there never is. Now im just exhausted. Monday I didnt go to physio in toronto ..they siad it was fine..i was just to friggin tired and sore. Tuesday same deal didnt go to orillia. and Im debating if i have a smaller collapse again..as it feels like someone is sitting on my left side..soo hard to breathe. I honestly havent been out my my house alot..if any. Thurday was yesterday..and I didnt go to phyiso cause well the stitches are out.. i took them out myself...it was healed and sitting in the er for 8 h to get them out with one snip of the sciossors is stupid.
My grandma also had surgery this week so my family was incredibily upset. My grandfather was a mess. My sisters long time boyfriend who has been in our family basically for 2 years, decided this would be a good week to end there relationship so my twin has been a mess. And i remember when my ex did that to me..and well her wonderful ex just ended it the same way.. coward.. text and fb..seriously? this is when I want to yell..get some balls ! , then my aunt and uncle are both now unemployed...shitty ecomony. Someone got a hold of my parents visa # and put 6000 dollars on there card....ya ..great.. so were sorting that out. My other aunt totalled her truck. and when we were in cambridge hospital yesterday seeing my grandma..my mom had a nervous breakdown. ITs just to much. Theres to much CF in my life and nothing else. Also didnt help that i forgot to call phyiso in orillia on thursday when I thought I did..the liquid o2 guy also came by and left any increcibly rude,unprofessional message on my answering machine. He never comes on set days..it was suppose to be tuesday and he didnt show up..well he showed up thursday..well fuck him i wasnt here..he got paid...he can shut up.
Instead I get a bitchy message of " well im in ur driveway, im not coming back this week so your just going to have to wait"..on and on ... im considering calling the company. I can understand being annoyed..but it was rude. And after a day of stress and people crying everywhere i cant deal.
Everyone talking about death and how no one nos what could happen. Im just done talking about it. I feel like crap end of story. I want the hospital bad. I want my friends to understand i dont have energy anymore, to deal with there problems...
I want the one retarded guy who keeps telling me he "loves me" to drop off this planet because he doesnt, hes just so deseparate he cant believe i wont go out with him. WHy would i date right now? Im happy to go read for hours and sleep. I just want it over. Live , die ...whatever... just i want it over. Slow suffication isnt for me..id rather be hit by a truck. Its not even the breathing this week...its more pain all over the place. and me doing things I cant remember. I hate that feeling. I wake up not knowing what i did. In the hospital i feel like theres more control.. i feel safter...at home im worrying my stupid lungs going to pop again. Its scary. i cant keep getting collapses and having to go and try and convince someone that i hav a pnemo in emerg and then when they realise it that im right...there running around becaues u only have SO MUCH TIME before ur fucked. Its a life and death situation. My HEART WAS IN the wrong spot. Everything just hurts and i just want to go to bed and sleep till next week and pretend this all didnt happen.
My grandma also had surgery this week so my family was incredibily upset. My grandfather was a mess. My sisters long time boyfriend who has been in our family basically for 2 years, decided this would be a good week to end there relationship so my twin has been a mess. And i remember when my ex did that to me..and well her wonderful ex just ended it the same way.. coward.. text and fb..seriously? this is when I want to yell..get some balls ! , then my aunt and uncle are both now unemployed...shitty ecomony. Someone got a hold of my parents visa # and put 6000 dollars on there card....ya ..great.. so were sorting that out. My other aunt totalled her truck. and when we were in cambridge hospital yesterday seeing my grandma..my mom had a nervous breakdown. ITs just to much. Theres to much CF in my life and nothing else. Also didnt help that i forgot to call phyiso in orillia on thursday when I thought I did..the liquid o2 guy also came by and left any increcibly rude,unprofessional message on my answering machine. He never comes on set days..it was suppose to be tuesday and he didnt show up..well he showed up thursday..well fuck him i wasnt here..he got paid...he can shut up.
Instead I get a bitchy message of " well im in ur driveway, im not coming back this week so your just going to have to wait"..on and on ... im considering calling the company. I can understand being annoyed..but it was rude. And after a day of stress and people crying everywhere i cant deal.
Everyone talking about death and how no one nos what could happen. Im just done talking about it. I feel like crap end of story. I want the hospital bad. I want my friends to understand i dont have energy anymore, to deal with there problems...
I want the one retarded guy who keeps telling me he "loves me" to drop off this planet because he doesnt, hes just so deseparate he cant believe i wont go out with him. WHy would i date right now? Im happy to go read for hours and sleep. I just want it over. Live , die ...whatever... just i want it over. Slow suffication isnt for me..id rather be hit by a truck. Its not even the breathing this week...its more pain all over the place. and me doing things I cant remember. I hate that feeling. I wake up not knowing what i did. In the hospital i feel like theres more control.. i feel safter...at home im worrying my stupid lungs going to pop again. Its scary. i cant keep getting collapses and having to go and try and convince someone that i hav a pnemo in emerg and then when they realise it that im right...there running around becaues u only have SO MUCH TIME before ur fucked. Its a life and death situation. My HEART WAS IN the wrong spot. Everything just hurts and i just want to go to bed and sleep till next week and pretend this all didnt happen.
Saturday, February 5, 2011
This last weeks been a b......
Well let me update this past week...it sucked lol. Monday I went to TGH for exercise I was out of breathe more than usual and LIsa even said I should go see a doctor but I was stubborn and the transplant clinic was super busy so I decided to go home. After that 2 h drive home I was in my house getting more and more out of breathe..all the while thinking in my head.OH god I think I have another pnemo. GREAT! :( By 3:30 my sister made me get into the car and go to emerg with her. Orillia was surprisingly really REALLY slow considering I was hyperventatling. I had to people with coughs manage to get in front of me :S made no sense. Then i saw a doctor ..soon as he came in I said " I realy think I ahve pnemo , Ive had one before".His exact words were " Oh my god I think ur right" ... HAHA i love when doctors are shocked that im actually correct. So then I get an x-ray
Look at this in all its beauty. My left lung is completely not there and my heart is in the wrong spot..TRUST me it wasnt a comfty thing to deal with. NEXT i sit in the ER for hmm 3 h? lol ...and get worse and worse breathing. the nurses kept saying to me ..the doctor has been paged...REALLy? can someone get him to get his butt down here...when he finally did show up he was complaining he was missing dinner with his wife..sucks to be u buddy if ud shown up 2 h earlier u would be eatting with ur wife right now. Anyways..this is where they drugged me to the point that I passed out.. NICE..and woke up at 9pm..in tube in place and my parents and sister complaining that Iwas saying the same sentence OVEr and over again without noing it. After that I got some morphine...and stayed over night in emerg. I kept telling them I wanted to be transfered to toronto..so the next day..BOOM get sent to toronto..at this point y lung was already inflated..IMPRESSIVE considering the last one took weeks to inflate. Got put into 76 on 6 Bond ..hung out with my awesome nurses "grace, nina, olga and karen :) and got drugged it was great. Dr, Macentyre..(ya i spell his name wrong..get over it) pulled the tube out yestrday.. I now have a killer set of stitches. My side kills ..i am still druged out .but not taking anymore pills cause I hate feeling outof it. and just watching to make sure my side doesnt give out again.
Other neews..other friends got the call and it was cancelled :P not kool..and another friend got terrible news and im hoping..fingers crossed a million for her that everthing bounces back. mircles do happen. ..so thats my update...
Look at this in all its beauty. My left lung is completely not there and my heart is in the wrong spot..TRUST me it wasnt a comfty thing to deal with. NEXT i sit in the ER for hmm 3 h? lol ...and get worse and worse breathing. the nurses kept saying to me ..the doctor has been paged...REALLy? can someone get him to get his butt down here...when he finally did show up he was complaining he was missing dinner with his wife..sucks to be u buddy if ud shown up 2 h earlier u would be eatting with ur wife right now. Anyways..this is where they drugged me to the point that I passed out.. NICE..and woke up at 9pm..in tube in place and my parents and sister complaining that Iwas saying the same sentence OVEr and over again without noing it. After that I got some morphine...and stayed over night in emerg. I kept telling them I wanted to be transfered to toronto..so the next day..BOOM get sent to toronto..at this point y lung was already inflated..IMPRESSIVE considering the last one took weeks to inflate. Got put into 76 on 6 Bond ..hung out with my awesome nurses "grace, nina, olga and karen :) and got drugged it was great. Dr, Macentyre..(ya i spell his name wrong..get over it) pulled the tube out yestrday.. I now have a killer set of stitches. My side kills ..i am still druged out .but not taking anymore pills cause I hate feeling outof it. and just watching to make sure my side doesnt give out again.
Other neews..other friends got the call and it was cancelled :P not kool..and another friend got terrible news and im hoping..fingers crossed a million for her that everthing bounces back. mircles do happen. ..so thats my update...
Sunday, January 30, 2011
When you dont choose transplant...
I had a friend , a cf friend this week decide they dont want transplant and I honestly dont no what to say to them. Not getting a transplant never came into my head, it was just a matter of when I needed to get signed up. It was after my major , life threatening lung collapse of last year that I automatically started getting signed up for lung transplant assessment. I just never wanted to feel that BAD ever again. I was exhausted I went to bed like any other night , and at midnightish, woke up not being able to breathe, i couldnt walk, talk, nothing...i started panicing, i didnt no what was wrong or what to do. Thankfully my dad heard me and 911 was called from there. It was terrifing. Also because when I got to the ER in my area they really didnt no what to do, or what was the matter. It took them over 2 hours to get a chest tube into me..for those 2 hours i had alarms going off everywhere, my heart rate was out of control, my o2 was insanely low, i couldnt ly down or sit up, i was in a weird hunched over postion, and they couldnt turn the o2 up afraid it would pop my other lung. I think its almost a good thing it happened. Because I NO how terrifying it is. I dont want to die that way. Sufficating!
So when this friend of mine tells me ..shes out.. she"ll just live the best she can till the end. I dont no what to say. They've given u a choice... "maybe die" or "die" and you choice die? I dont understand it. We are all fighters...we have fought our entire lives...and to just give up...it seems ...soo wrong. I no its such a personal decision...but I just cant understand ..why anyone would chooose to go out...like that. coughing..sufficating..terrifying...i dont understand.
So when this friend of mine tells me ..shes out.. she"ll just live the best she can till the end. I dont no what to say. They've given u a choice... "maybe die" or "die" and you choice die? I dont understand it. We are all fighters...we have fought our entire lives...and to just give up...it seems ...soo wrong. I no its such a personal decision...but I just cant understand ..why anyone would chooose to go out...like that. coughing..sufficating..terrifying...i dont understand.
Friday, January 21, 2011
The big one..
So I’ve never really ever been religious. My parents are both Christian, but my mother is catholic and my dad is Presbyterian. They both haven’t been to church literally since their wedding. Needless to say they are not the most religious people you have ever met. My grandmother use to( and still does occasionally) take us to church as kids, but that was only when her and my grandfather were around and even then it would either be their church in Cambridge or one of the 3 churches of different religions that reside in my tiny community. YES a town of less than 2000 people and we have 3 different churches, all within 2 blocks of each other.
I never liked the Presbyterian Church in my community every time I have ever gone I wasn’t treated that well, honestly. You’d either be completely ignored or I had people say some snippy comments to me for not coming to church on a regular basis, considering as they said, that I just lived around the block. I didn’t find this very welcoming and stopped going because of it.
I’m talking about religion though because I guess I found some comfort in it this week. This is new for me, usually I can’t relate or I see no point. When I was watching the funeral for Sgt. Russell, the police officer that was killed last week, certain things the minister was saying actually made sense to me.
I’ve never read the bible, though I do have one sitting in my room. My family claims we don’t really know what to believe. We don’t say grace before we eat, we don’t pray before we go to bed, and we don’t go to church. I guess to some families we’d be complete sinners. I don’t know. My sister and I claim we aren’t that religious, though we have a Blessed Jesus hanging in our kitchen at our apartment. Also on more than one occassion Ive done the sign of the cross and repeted "In the name of the father,and the son and the holy sprit . Amen" so if im not catholic am I insulting someone?? Because in some ways I wanted to become catholic, it seems like it had more to it then just singing. I DONT know basically. I believe there is something after all of this, I can’t contemplate that there couldn’t be. I’m terrified of dying, but somehow some of what was said was comforting and I finally understand why people call priest in when they’re dying. I understand. It gives you comfort to know what could happen. I need to keep thinking about this and it is a heavy subject to talk about with anyone so heres to hoping I don’t offend anyone ....
I never liked the Presbyterian Church in my community every time I have ever gone I wasn’t treated that well, honestly. You’d either be completely ignored or I had people say some snippy comments to me for not coming to church on a regular basis, considering as they said, that I just lived around the block. I didn’t find this very welcoming and stopped going because of it.
I’m talking about religion though because I guess I found some comfort in it this week. This is new for me, usually I can’t relate or I see no point. When I was watching the funeral for Sgt. Russell, the police officer that was killed last week, certain things the minister was saying actually made sense to me.
I’ve never read the bible, though I do have one sitting in my room. My family claims we don’t really know what to believe. We don’t say grace before we eat, we don’t pray before we go to bed, and we don’t go to church. I guess to some families we’d be complete sinners. I don’t know. My sister and I claim we aren’t that religious, though we have a Blessed Jesus hanging in our kitchen at our apartment. Also on more than one occassion Ive done the sign of the cross and repeted "In the name of the father,and the son and the holy sprit . Amen" so if im not catholic am I insulting someone?? Because in some ways I wanted to become catholic, it seems like it had more to it then just singing. I DONT know basically. I believe there is something after all of this, I can’t contemplate that there couldn’t be. I’m terrified of dying, but somehow some of what was said was comforting and I finally understand why people call priest in when they’re dying. I understand. It gives you comfort to know what could happen. I need to keep thinking about this and it is a heavy subject to talk about with anyone so heres to hoping I don’t offend anyone ....
Tuesday, January 18, 2011
OOOO books
Book # 4 of romance string. I know how they all end, Happily Ever After. The girl can be one giant moron in the beginning sometimes though. I love Julie Garwood but sometimes i just have to put the book down and shake my head. The girls are always giant airheads and the men are always just plain Giant. Hes always towering over her and the most muscular of the guys, always doesnt talk much but she "knows" what he means. It just makes me start anazying there relationship haha and how much miscommunication is going on and that is one of the biggest reasons I have to put these books down. Im start thinking OOOO im sure you know what hes thinking, sure you do . But maybe thats just my old bitter-ish self talking.
I watched the Toronto Sgt. police funeral today on tv. I had to walk away other wise I was going to cry in front of my parents and they would have thought I'd lost my marbles. I just feel so bad for his wife and child. Had to walk away.
Im not really a crier in front of people. I don't like it. Makes me feel weak. I know thats a pretty lame excuse but its the truth, I want people to know I can handle things, like this life, the truth about everything...you cant really have that if your always breaking down. Given Predisone makes me crazy some days , makes my moods go all over the place I feel like im 12 years old all over again and being hormonally out of balance. I really feel bad when I do crack at people because its usually huge.
im currently crushing my urge to text my ex. I made the mistake of talking to him. Im now going back to checking days off that I dont talk to him. Its been soo long now. 2 years in april literally. Over a year since ive seen him. I want to know how everyone else does it? how are they not this lonely at times? espeically with all this stuff going on? hmmm Im not depressed granted, just venting so I dont do something and try to talk to someone who doesnt care, and it just feeds his ego that i still might want him.
I watched the Toronto Sgt. police funeral today on tv. I had to walk away other wise I was going to cry in front of my parents and they would have thought I'd lost my marbles. I just feel so bad for his wife and child. Had to walk away.
Im not really a crier in front of people. I don't like it. Makes me feel weak. I know thats a pretty lame excuse but its the truth, I want people to know I can handle things, like this life, the truth about everything...you cant really have that if your always breaking down. Given Predisone makes me crazy some days , makes my moods go all over the place I feel like im 12 years old all over again and being hormonally out of balance. I really feel bad when I do crack at people because its usually huge.
im currently crushing my urge to text my ex. I made the mistake of talking to him. Im now going back to checking days off that I dont talk to him. Its been soo long now. 2 years in april literally. Over a year since ive seen him. I want to know how everyone else does it? how are they not this lonely at times? espeically with all this stuff going on? hmmm Im not depressed granted, just venting so I dont do something and try to talk to someone who doesnt care, and it just feeds his ego that i still might want him.
Friday, January 14, 2011
Oh Nonsense
Oh today and yesterday have been fantastic. A bit of normalie ( i realise this isn't spelt right, but for the life of me can not remember how to spell this word and my sister does not have word on this computer lol) , I'm at the moment at my sisters appartment, Ive had enough energy in the last 2 days to actually do some stuff. I went to pretransplant exercise yesterday in orillia, I hungout with my old bittes, aka 65-80 year old men. They are hilarious I have to say, they gossip worse than women. Plus its like 1940's attutide and I'm pretty much expected to sit there and be quiet as im "a girl". There not all backwards and there two guys there I regularly talk to, they all are on city counsils and what have you, so honesty they know all the bylaws etc, stuff I don't know. So i have a good time asking them questions. The one guy always starts with " So i was in the army..." hahahna i've heard so many army stories now its hilarious, and his poor wife lol hes always saying how she doesnt no how to do things haha aww.
Anyways I thought I'd share that I met a Doctor who was named Dr. Thesaurus, want to bet that's not his only name? hahahaha. I do feel bad for him though, imagine how many times people have said this to him. Other than that I'll filling my head full of nonsense and reading romance novels. I haven't in a long time and it just seems like a good day to read a book with zero plot, unrealistic characters and fluffy story lines lol I love it. Actually my favourite line of all time from a romance novel was one from Julie Garwood, one of her books I think it was "the wedding" anyways theres a line in it when the characters meet and it says " he was so big he blocked out the sun" BAHAHHAAH its classic. Then you wonder just how short this women is haha..i love it. Who doesnt like a book which has a happy ending you can see happening from page 1 lol <3 it
Anyways I thought I'd share that I met a Doctor who was named Dr. Thesaurus, want to bet that's not his only name? hahahaha. I do feel bad for him though, imagine how many times people have said this to him. Other than that I'll filling my head full of nonsense and reading romance novels. I haven't in a long time and it just seems like a good day to read a book with zero plot, unrealistic characters and fluffy story lines lol I love it. Actually my favourite line of all time from a romance novel was one from Julie Garwood, one of her books I think it was "the wedding" anyways theres a line in it when the characters meet and it says " he was so big he blocked out the sun" BAHAHHAAH its classic. Then you wonder just how short this women is haha..i love it. Who doesnt like a book which has a happy ending you can see happening from page 1 lol <3 it
Wednesday, January 12, 2011
To A certain SOMEONE
To a certain person who texted me today, you know who you are, and I doubt you’ll read this, but you never know:
So this is where I try to keep on my big girl pants and not go vividly, and wildly screaming into a certain friends face. The last couple days have been very trying with my emotions and I’m starting to think some of my reactions could just be ruled out as the forlorn “roid-rage” as they call it. However, some of my reactions I believe are completely called for in these situations.
Today I’ve literally done nothing except wake up, go on facebook, and text a couple people, yet I am now still in a situation where I want to “kick ass”. When I’m told I’m a total stalker for being on facebook so much, or that I should be out doing something, I’m going to get mad. When I’m told that I should just, and I quote “ suck it up”, and go do what everyone else is doing, cause there’s no reason I shouldn’t be, well let’s just say, I didn’t take those statements all too well.
First this is my only day off from doctors appointments and all things transplant, I wake up late, I eat late and I don’t plan on doing much today, maybe take a nap and try to feel a bit better. Yes I am bored, with transplant I miss working and going to school, I miss my social life. This doesn’t mean I’m going to go jump in my car and go running around all over the place just because ONE person thinks I should be. Makes me want to yell “DUMBASS” in his face and say “ok so ill sit on your chest, strangle you and then you get up and go run upstairs, we’ll see how you do”.
I won’t except dumb comments anymore, I’ve explained to my close friends what’s going on with me a million times over now, if you can’t figure out I can’t go run a marathon right now, well honestly you’re a dumbass. I don’t care if it isn’t “cool” that I don’t have plans on Friday night, or that I haven’t gotten “drunk” in forever. I don’t care if I’m not dating and I certainly don’t care what I “should be doing”. I’m not doing it, that doesn’t make me a loser or out of the “group”, it makes me incredibly sick and dealing with what I have to survive. I do what I can to stay entertained and keep everything “normal” I didn’t think I had to prove that to certain people.
Everyone else has been fantastic I couldn’t ask for better friends or family. A couple people though are dumb and if the most important fact in your life is getting drunk and you can’t see life without booze sorry to inform you but you sound like an alcoholic, and PS you’re out of college now, it isn’t “kool” to get drunk every other day. Grow up.
So this is where I try to keep on my big girl pants and not go vividly, and wildly screaming into a certain friends face. The last couple days have been very trying with my emotions and I’m starting to think some of my reactions could just be ruled out as the forlorn “roid-rage” as they call it. However, some of my reactions I believe are completely called for in these situations.
Today I’ve literally done nothing except wake up, go on facebook, and text a couple people, yet I am now still in a situation where I want to “kick ass”. When I’m told I’m a total stalker for being on facebook so much, or that I should be out doing something, I’m going to get mad. When I’m told that I should just, and I quote “ suck it up”, and go do what everyone else is doing, cause there’s no reason I shouldn’t be, well let’s just say, I didn’t take those statements all too well.
First this is my only day off from doctors appointments and all things transplant, I wake up late, I eat late and I don’t plan on doing much today, maybe take a nap and try to feel a bit better. Yes I am bored, with transplant I miss working and going to school, I miss my social life. This doesn’t mean I’m going to go jump in my car and go running around all over the place just because ONE person thinks I should be. Makes me want to yell “DUMBASS” in his face and say “ok so ill sit on your chest, strangle you and then you get up and go run upstairs, we’ll see how you do”.
I won’t except dumb comments anymore, I’ve explained to my close friends what’s going on with me a million times over now, if you can’t figure out I can’t go run a marathon right now, well honestly you’re a dumbass. I don’t care if it isn’t “cool” that I don’t have plans on Friday night, or that I haven’t gotten “drunk” in forever. I don’t care if I’m not dating and I certainly don’t care what I “should be doing”. I’m not doing it, that doesn’t make me a loser or out of the “group”, it makes me incredibly sick and dealing with what I have to survive. I do what I can to stay entertained and keep everything “normal” I didn’t think I had to prove that to certain people.
Everyone else has been fantastic I couldn’t ask for better friends or family. A couple people though are dumb and if the most important fact in your life is getting drunk and you can’t see life without booze sorry to inform you but you sound like an alcoholic, and PS you’re out of college now, it isn’t “kool” to get drunk every other day. Grow up.
Monday, January 10, 2011
SO PISSED
So my afternoon consisted of me sitting at TGH, which wasnt a problem until I got in to see the doctor and he confirmed what I was scared of. That my pfts are INDEED wrong within there system. I thought of this before the christmas holiday when I realised that ive only EVER had one pfts test at TGH, my other one was booked when i was admitted into st.mikes and the other was a freakin snow day soo ...im stuck in this situation where tgh has numbers from last MAY when I was walking around peachy keen without o2 and sitting at a good 40% lung function. I asked doesnt st.mikes send over pfts? and yes they do when they get a request. KEY in retarded transplant coorindar and VOLia, DING DING DING we have found my problem. TO be honest I like the women when I met her I thought she was nice, smart, put together, organized, since that first meeting im seriously considering she has none of thoses skills.
I CALLED HER before christmas and told her my "FEAR" that my pfts were not up to date and that if lungs came up they would overlook me because my file says "im stable and at 40%" and she said OHH we'll book u a new date right away and ill check ur numbers. NOW clearly she didnt check and DIDNt get me a new appointment. PLUS tgh had no idea i had be hospitalized ! I called 4 people for frig stake! how MANY people do i have to call to get someone to WRITE SOMETHING DOWN. THIS IS MY LIFE where talking about here! My life is in the balance of me getting this transplant I take GREAT offense when I have to correct the paperwork and make my file up to date! I AM the patient and if I wasnt as good with understanding hospitals, as I am ,id be screwed! Now the hospitals are going to pin blame on eachother.. no one is held accountable for mistakes like theses. I know this cause just last month no one knew i was admitted which I THOUGHT i fixed and my coorindator said was fixed. CLEARLY shes wrong again. IM PISSED SO PISSED. I dont even no what to say. Im listed 20% higher than what I AM. and the worst thing..they cant understand why im sooo mad.
I CALLED HER before christmas and told her my "FEAR" that my pfts were not up to date and that if lungs came up they would overlook me because my file says "im stable and at 40%" and she said OHH we'll book u a new date right away and ill check ur numbers. NOW clearly she didnt check and DIDNt get me a new appointment. PLUS tgh had no idea i had be hospitalized ! I called 4 people for frig stake! how MANY people do i have to call to get someone to WRITE SOMETHING DOWN. THIS IS MY LIFE where talking about here! My life is in the balance of me getting this transplant I take GREAT offense when I have to correct the paperwork and make my file up to date! I AM the patient and if I wasnt as good with understanding hospitals, as I am ,id be screwed! Now the hospitals are going to pin blame on eachother.. no one is held accountable for mistakes like theses. I know this cause just last month no one knew i was admitted which I THOUGHT i fixed and my coorindator said was fixed. CLEARLY shes wrong again. IM PISSED SO PISSED. I dont even no what to say. Im listed 20% higher than what I AM. and the worst thing..they cant understand why im sooo mad.
Sunday, January 9, 2011
I wonder what 2011 holds
Don't you love when you find a song that somehow means more to you than just the words? Like its so perfect it was written just for you? I found a couple songs over the last couple days that have expressed that to me. I'll youtube the videos for everyone because they are really good songs. The first is Paperweight .
The video isnt important its from some movie appartently. I just think it sounds how I feel when I love someone. I think the lyrics are perect . Haha just the lyrics " mess up my bed with me , Im happy to lay here just happy to be here" ...the whole song. Perfect. Every word you say i think I should write down. lol perfect. Makes me smile. Ivve been feeling very creative lately and I feel like I should make a video to this at some point.
The second is by the same group but called "Hello"
It reminds me of a certain someone, reminds me of my life. "You know what they say, you cant have it, so you want it back, Im way past that " lol
The third is just a very cute song. Popular. I like it.
The last wont let me embed it grrr so heres the link
http://www.youtube.com/watch?v=0xXD9-1mLBY
I was on the job bank for our area, because I am looking "beyond transplant" even though it hasn't happened yet, anyways I found a medical rep. job but you need 102 wpm typing :S I was like HOLY! I need to start practice typing again. I'm probably at around 60? maybe. I want to contine my life after all this is over...make it a bad memory. This is the only thing keeping me sane lol. Plus I got an late christmas , early birthday gift today. A NEW blender!!!! who ever said women shouldnt get kitchen app. certainly doesnt know me because Im estastic. PLUS i got sheets and bubble bath and THONGS for the kitchen...plus a spinny thingy to hold all of them and a candle...OMG it was like christmas all over it was amazing. THANK u auntie norma :)
Im 23 in 11 days. Countdown is on. Am I doing anything for my birthday with my twin, no lol shes working..SOOOO i dont no about this year. Lungs? lol that'd be a great gift lol
The video isnt important its from some movie appartently. I just think it sounds how I feel when I love someone. I think the lyrics are perect . Haha just the lyrics " mess up my bed with me , Im happy to lay here just happy to be here" ...the whole song. Perfect. Every word you say i think I should write down. lol perfect. Makes me smile. Ivve been feeling very creative lately and I feel like I should make a video to this at some point.
The second is by the same group but called "Hello"
It reminds me of a certain someone, reminds me of my life. "You know what they say, you cant have it, so you want it back, Im way past that " lol
The third is just a very cute song. Popular. I like it.
The last wont let me embed it grrr so heres the link
http://www.youtube.com/watch?v=0xXD9-1mLBY
I was on the job bank for our area, because I am looking "beyond transplant" even though it hasn't happened yet, anyways I found a medical rep. job but you need 102 wpm typing :S I was like HOLY! I need to start practice typing again. I'm probably at around 60? maybe. I want to contine my life after all this is over...make it a bad memory. This is the only thing keeping me sane lol. Plus I got an late christmas , early birthday gift today. A NEW blender!!!! who ever said women shouldnt get kitchen app. certainly doesnt know me because Im estastic. PLUS i got sheets and bubble bath and THONGS for the kitchen...plus a spinny thingy to hold all of them and a candle...OMG it was like christmas all over it was amazing. THANK u auntie norma :)
Im 23 in 11 days. Countdown is on. Am I doing anything for my birthday with my twin, no lol shes working..SOOOO i dont no about this year. Lungs? lol that'd be a great gift lol
Friday, January 7, 2011
Rainbows and Unicorns
Why do I have rainbows all over my page? Well if you must know ( which I am sure you really are!) It reminds me of wallpaper we had at our first house. It had rainbows and pot of golds all over it. Colleen and I use to sit on our beds and pick the sparkles off of it, sorry mom and dad that one is true, we also use to throw barbie shoes behide the wood in our wall in the basement so if anyone ever has taken off the wood panelling god knows they found a good hundred barbie shoes. Nothing much is new, I think the meds they gave me at clinic might actually be doing something which is new I guess, usually oral meds do nothing for me anymore. I also have a plan to take up knitting, dont laugh, your already laughing :P I need somehting to do, something that does not involve tons of endurance or exercise what-so-ever. Either that or I take up crocheting again but I have no idea where my crochet hooks are, and Im bad at it i'd need to put some time and energy into it so that I can get good.
Maybe write something? I use to be good at poetry and I even wrote a couple good short stories I use to live to write, honestly i was one little dork as a kid, I liked to write, draw, poerty, read, I was quiet and i had werid bangs...poor child lol. Where was the soccer gene when I needed it? Cant complain though I look back and Im like jesus at least you can comb ur hair right now haha (most days). I realise Im somewhat of a fashion faux pas at times. I think last year of highschool i had money to burn and a fashion sense...now im just fashion confused and my size goes all over the place so often i just gave up a while ago...just get new lungs and ill accessorize later. K I have no idea what this blog was going to be about I forget. Still looking for my price charming, send resumes lol :) (remember make a cover letter) lol
Maybe write something? I use to be good at poetry and I even wrote a couple good short stories I use to live to write, honestly i was one little dork as a kid, I liked to write, draw, poerty, read, I was quiet and i had werid bangs...poor child lol. Where was the soccer gene when I needed it? Cant complain though I look back and Im like jesus at least you can comb ur hair right now haha (most days). I realise Im somewhat of a fashion faux pas at times. I think last year of highschool i had money to burn and a fashion sense...now im just fashion confused and my size goes all over the place so often i just gave up a while ago...just get new lungs and ill accessorize later. K I have no idea what this blog was going to be about I forget. Still looking for my price charming, send resumes lol :) (remember make a cover letter) lol
Wednesday, January 5, 2011
3 Months listed
3 months of praying this stupid thing will go off. All decemeber Ive been worried that my pfts at toronto general still say im 35% which Im no where near at this point. Ive only ever had 1 pfts test at TGH and im worried no one can "positively" say that they know where my lungs sit. Id like to know if lungs come along im not , not going to get them cause someone thinks im stillat 35% not at the 20% where I am. I actually talked to the admin today (SHE ACTUALLY PICKED UP HER PHONE..this is a moment!!) anyways she wasnt that much help she basically said in 30 seconds or less that she could careless...not in that exact words i mean but pretty close...sooo heres to having to call my transplant coordinator again tomorrow and explain that I NEED a pfts test and maybe she can figure this one out. Who knew that when waitin for this surgery you get stopped with sooo many admins, paperwork and people not checking there messages :P I can say this cause I have a college dipolma in what that lady is doing ..and trust me...SHE SUCKS at her job... :P just saying.... employ me after I get lungs haha
I also was at clinic yesterday were after an xray it was shown that I have mini lung collapses in both my right and left lungs , upper and lower lobes :P YAY, not. I guess I kinda thought that was what was going on and now it makes sense why my oxygen need has gone so far up. So now im waiting to be "readmitted into st. mikes" , i swear I should get flyer miles of some sort, like after so many visits i get a free boob job or something haha cause seriously!!
I also have sleep pills again...im far to excitied about this. No I don't take them all the time but if your sleep has been as messed up as mine recently you'd be happy and jumping off the walls too. Im guaranteed one nights PEACEful ,JOYFUL sleep....you cant replace that i tell u, it doesnt matter how hard I cough tonight....ill sleep like a baby through it....yay. I have exercise tomorrow morning..soo yes I am smart enough to set my alarm haha. Im debating giving my parents my pager tonight just cause Im going to be out of it soon...we will see. I also made a v-log yesterday..its currently uploading..ill post it when its done...
I also was at clinic yesterday were after an xray it was shown that I have mini lung collapses in both my right and left lungs , upper and lower lobes :P YAY, not. I guess I kinda thought that was what was going on and now it makes sense why my oxygen need has gone so far up. So now im waiting to be "readmitted into st. mikes" , i swear I should get flyer miles of some sort, like after so many visits i get a free boob job or something haha cause seriously!!
I also have sleep pills again...im far to excitied about this. No I don't take them all the time but if your sleep has been as messed up as mine recently you'd be happy and jumping off the walls too. Im guaranteed one nights PEACEful ,JOYFUL sleep....you cant replace that i tell u, it doesnt matter how hard I cough tonight....ill sleep like a baby through it....yay. I have exercise tomorrow morning..soo yes I am smart enough to set my alarm haha. Im debating giving my parents my pager tonight just cause Im going to be out of it soon...we will see. I also made a v-log yesterday..its currently uploading..ill post it when its done...
Saturday, January 1, 2011
New Year
2010 was pretty bad. It started off good and then went to hell pretty quickly. I went from being the healthiest Id been in 5 years and dating a guy happily to having my lung collaspe in feburary and from there it went to hell. After graduating college in april, I just kept getting sick, lung function kept declining. I had a lung transplant assessment that I was "sure" wasnt going to actually mean anything for a couple years. July hit and I was on o2 24/h a day and Ive been on it ever since.I got listed for lung transplant in october. I had to quit the job I liked, I couldnt look for any work related to what I went to school for. I no longer have any sort of social life. I can't walk upstairs without almost passing out. My lungs always hurt, I cant sleep on my back anymore. I spend every week going back and forth between toronto and orillia , waiting. Just waiting for the call. Spending more time in doctors appointments than anywhere else. Thats the problem in all of this..limbo...life on hold. I just never thought there'd be a moment where I'd think...damn..what Id kill to be able to walk upstairs, walk outside, walk down the driveway to my car and get in without having to stop because im soo out of breathe. sooo needless to say 2011 has to be better. Im hoping I get lungs and get my life back. Fingers crossed. I have realised though that after all of this..ill never be one of those people on the sidelines again...screw being embarssed id rather have fun...i miss being able to do stuff. lifes a gift.
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