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
Monday, March 28, 2011
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.
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