My friend

My friend is still in the ICU due to a bleed in his lungs from before christmas. The hospital tried to go in and stop the bleed but the vessel ended up being 3x the size it normally is soo they ran out of stuff to pack the bleed so then lung damage occured and hes now down to about 15% ...though im not sure how they know that because he hasnt exactly been concsious for that long and I highly doubt in the matter of minutes/hour his been a wake they've made him do a pft test. Anyways his kidneys, heart and lungs started shutting down before christmas. His kidneys then bounced back and started working, they put him on a vent for his lungs and a ECMO i think it is called for his heart. The problem now is that there trying to get him off the ECMO but everytime they try he needs CPR as his own heart gives out. Im praying for him, though I myself am not that much of a reglious person. I was spritual but honestly im starting to doubt that too, and this is coming from the girl who has seen doors shut, cabniets open, lights turn on in my house by themselves..im now wondering if there is another explanation. Its weird tosay that...i mean literally nothing has happened to me since I got back from the hospital...weird.

But the point of this blog isnt to debate if my house is indeed haunted or not..NO its to rant about the morons on my friends facebook. This poor cf friend that ive been talking about above , has been pretty damn healthy..been going to the gym..isnt on o2....all that...he wasnt listed for transplant...since all of this has happened he now is. What makes me angry in all of this ..are all the retards on his page...he was listed for under 8 hours and they all started saying "Oooo soo hes getting lungs tomorrow?"...what:??no...i want to freak at else people but some of them are so stupid i dont even no where to start. Does no one have common sense? U cant stock pile lungs, someone has to die and I highly doubt someone listed for 8 hours is gonna get lungs that fast....it could happen..but there is alot of doubt there. Its just im dealing with the same questions..I had friends come home for the holidays and some of them turned and said " you dont have lungs yet?"...ummm no..., and then have to go into the whole how you get lungs process again. Because again, they think its easy...take lungs out, put new lungs in , woo hoo...walk around...BAM better. They have no idea how hard it actually is. They also think our healthcare system is amazing...yes the people who work hard are amazing...the system its self ..sSUCKS. Its slow, theres never enough beds....theres a million problems. People keep saying "any day now allison"...its easy for them to say there not the one waking up with headaches everyday..and having issues walking upstairs to eat breakfast.
Thats the other problem ..friends think i can go out and hangout..my energy is zero..it would be amazing if they came here soo i didnt have to leave ...drive or walk anywhere... Guess im in sort of a grumpy mood im just sick of answering the same question oer and over

Christmas

Well family wise , food wise and Santa wise I had a great Christmas. My familys amazing, the food is fantastic! and I seriously got spoiled by dear Santa. I got a camera to replace the one I got last year and seriously dropped over and over again so its actually now taped together :) haha soo i wanted a camera badly. Plus a wicked potato mashed thats shaped like a man ..ill add a pic at the end because it is fantastic..anything kitchen related makes me go to heaven :) My family hasnt had any major feuds or fights which, in its self is a miracle! Im happy that way ! I played mexican train with my grandparents and aunt and brother it was pretty fantastic! And moms cooking is great! Turkey was yummy tonight along with the stuffing and all that. I live for the stuffing! Ham was great last night too!
Christmas was great! Health wise not so good..but i kinda expected that to happen.
I think ive actually lost weight over christmas which, is kinda interesting...stuff ur face everyday and loose ten pounds who would have thought? I think its hospital time again...My energy level is pretty much at zero. My grandparents have been sleeping in my bed , and the spare room upstairs has my aunt and uncle soo i dont really have a bed in my house so ive been sleeping at the appartment with my sister. Which is great I have a bed there..its just really exhausting going over there which all my stuff and o2 and i dont really have the energy to carry all the stuff into the house. The bonus is the appartment is flat noooo STAIRS! my house has stairs to everylevel..and on average its about 6-8 stairs..which sounds like nothing.but right now thats like a friggin mountain..plus then i need high o2 walking upstairs but then if i sit down upstairs my o2 is WAY to high...and id have to walk back downstairs to turn it down..Dilima. anyways i dont want to complain the last coupld days have been fantastic..im just exhausted. Im sleepoing on the couch at the house tonight..puffers are gonna have to do it ..cause i left all my ventolin stuff at the appartment..sleep would be great :) Im coughin up a lung again too, and even though ive been stuffing my face...i dont feel like it..which is :P not kool....Fingers crossed for lungs as usual.

Im Jealous

I was at TGH again today for exercise and Ill admit i was incredibily jealous today. The most recent transplant recipents were all back at exercise today. I believe theres 3 of them . One, a girl my age(i think, sometimes im a bad judge of age). Im jealous heres this girl who i saw less than a month ago just like me .and today no oxygen and bootin it on the trendmill. Im jealous, i was like WOW and dont get me wrong im so happy for her, but theres always that pang of DAMN it that could be me. Yes I realise thats not how it works..its just im jealous theres not much else to say i want it so bad. Shes got her life back, she doesnt look like death anymore...im still debating if its worth the energy to go up both sets of stairs in my house from the basement to take a shower, and im still not sure if its worth it.

What didnt help was this other lady..i have no idea what her name is ..but she acts like shes gonna pass out everytime I see her and to begin with i thought she was really really really sick...and then i realised today...shes full of shit lol.
She does everything really slow, makes her husband get everything for her, leans over and moans...but u no whats missing in all of this? breathing problems...i noticed today.she makes alot of noice...bitches alot..but really she never looks out of breathe or that shes having problems...she just covers it up by bending over and moaning ....i was shocked ..and i think i might have actually laughed. Shes on less o2 than me...which i no sometimes doesnt mean much..but shes lifting over 10lbs on her legs...i was like :o i lift 4lbs with difficultly i might add and im out of breathe by the end of it. I know where all different...but today i was stuggling to all hell and was still doing everything..and heres this lady...moaning and all this right in front of me..and i was like..jesus..shes just lazy. I mean yes she coughs....so do i , but i dont no...shes full of shit lol.
The other lady that was next to me to begin with was hilarious for the same reason. She was on 1 L, shes also the same lady that was bitching with the transplant patients last week and I realised she knows nothing about what she is getting herself into. Anyways, she was panting and all this beside me...all the while her o2 stats are 98-99 % and her heart rate isnt even over 110...and iw aslike..SERIOUSLY. Your full of shit too lol ......i mean by the end of exercise my o2 was in the 80s and my heart rate was 152...for god sake...IM booting it...soo thas my complaining...I have no problem when people are really sick and still trying...but them lazy people with amazing acting skills...GRRR thats all i have to say.

Christmas Time

I cant breathe...well thats nothing new...but its actually alot worse than last week..sooo ive taken matters into my own hands again and upped my predisone. I wish they hadnt touched my dose weeks ago..because everything did go to hell after that. So ive put myself back up to 40 for the day and will start tabering it again and well see if im not as short of breathe.. because i dont have a lung infection i know this... its all stupid inflammation again. Lowering the o2 back to 4l WOULD BE FANTASTIC. Im not expecting miracles..but this week has been a million times harder than normal . I have ONE christmas gift left to buy and i no what im getting i just need the energy and breathing ability to go get it :P and im giong to get candy so i can do my gingerbread house...im at my sisters appartment right now alone..and im tempted to call myh parents and ask them if they can come help me pack everything back into my car. Though I no if i do that it will be used against me later on reasons why i shouldnt come over here anymore.

They mean well , its just driving me nuts. Like getting helped getting dressed is driving me up the wall..i feel 4 years old again. then i get mad and start cursing..and im not fun to be around. Im pissed at my own body..not my family. Im just frustrated that i have all these plans and no ability to do it ..grrr.

Im ok though i had fun playing dressup yesterday with my sweater dress and got all make up ed up. it was awesome.. i weent to pretransplant wiork up in nylons and a dress haha needless to say i made a statement :p haha

Transplant Rant -NOT about me ~

So I went to toronto today for the pretransplant work up exercise thing-a-ma-jig and i was doing ok , then 2 ladies sat down next me to. I honestly don't know there names but there conversation pissed me off royally. One of them has got her transplant, the other still waiting. The one that got hers a month or so ago is healthy, happy and living life...BUT sat there and bitched about taking meds. Pills..she was complaining about PILLS. its a Pill TAKE IT. They just saved ur life by giiving u some dead persons lungs..its a miracle ur still alive and your complaining u have to pop a couple pills aday. NOW i can say this because I already take 50-60 pills aday soo i dont see the problem why she can't just take them?
Plus she was bitching about having to go for PFTs, taking prednisone and getting medicine induced diabetes....and it pissed me off because I already have and do all that..and I DONT HAVE lungs. It just seemed like a slap in the face to however donated there organs. They saved u and then she lives and bitches about the meds that are going to keep her alive. I felt like saying.." here we'll trade u take my shitty lungs and ill take ur good ones", cause really? pfts show how well ur lungs are doing, predsone sucks but u need it to stay alive ..and diabetes..well its brought on ny the med usually its not sevre because its brought on ny the med...at least she doesnt have cf and have to try to keep her weight up but eat healthy..figure that one out? ....It just made me mad because she women SMOKed and did this to her self and they fixed her..and ive been dealing with this crap my whole life and would give anything to be in her position.

I mean why bitch to the people who are still waiting?? Theres no sympathy there....we'd give anything to be her.
THen whats worse is they dont know what there tests are :o ...they didnt no what pft stood for...why they were doing it...my face was probably was priceless...i was shocked. These people dont no what there doing...clearly didnt read there transplant book..the other lady that was sitting next to her was shocked about all the complications that could happen..it was apparent she hasnt read her book yet..just signed the sheets like it was nothing...
but anyways transplanted lady got her lungs in 4 months...she HAS no reason to bitch. A new life for her..and shes anicent lol...soo now this grandmother can go run a marathon maybe not yet..but it could happen now...and im jealous and pissed she could be soo thoughtless to everyone else around her.

wheelchair time

Sooo i need a wheelchair I cant do this anymore. I can barely dress by myself..walking is insane. Im sitting at my computer..out of breathe..AGAIN. Clinic has soo many people either sick or trying to get stuff done before christmas there isnt even a point calling them. They dont have beds I no that for sure and I dont no if hospital meds are going to help me at this point. Im not really coughing up anything. Im out of breathe yes, but its a dry cough ...soo maybe my lung function has just kicked the big one and there isnt much i can do. I just almost passed out buying christmas stuff last night I was in winners and had to get a cart and then seriously just stop and try to breathe ..and all i did was walk in the store...that was it..no seriously activity..just slow walk. Soo its time for help ill admit it.

I have to go to exercise this morning...im glad they have an o2 stat monitor there...i can see how much o2 i need walking. Then hopefully vital aire calls back so i can get liquid o2 or whatever. I need to buy an o2 stat asap. I think my dads driving me to orillia today so i dont have to walk up the hill to the hospital.... :P i think i literally wouldnt be able to do that tody :P and hes going to look into wheelchair at shoppers. and my mom said she'd help with my chest phyiso later. I love my fam...cause seriously I cant do this by myself right now

This Past Week

I will be honest this past week hasn't been my finest. I've been bitchy and complaining to my entire family and taking this whole thing out on them. I yell, cough my head off, swear, you name it. Its just been a really bad week because I've realised I don't know what to do anymore.

You have to understand after years of being in the hospital and as a CFer I know what I'm doing. I am what I call a professional patient. I know hospitals and illness inside and out. I know when I'm sick and when I should wait it out for a while. I know when I have a lung infection, I know when my o2 stats are to low or my diabetes is out of wack. It's scaring me that I don't know whats wrong anymore. Too much o2 ? or not enough? High heartrate for no reason? shortness of breathe sitting?, feeling sick to my stomach, shaking from high dose cortisteriods, shaking from to much o2?? I DONT NO. Am I so sick I should be in the hospital? or should I just be calling clinic? Which clinic do I call? transplant or cf ? or both?

I'll be honest I loss some faith in the cf clinic this week when they told me they had no idea i'd had my assessment and was already listed for transplant ? WTF? I know don't swear or freak out, BUT SERIOUSLY? They...THEY sent me for assessment in May, Ive been in the hospital 3 times since then..and I got listed in October...and they were told this...they knew this....sooo what the heck? Not only that..they had no idea i was in the hospital in November? I don't no what happened last clinic but I was looking at them like they were nuts. Whoever was in charge or writing my chart last time I was in is getting a BIG F. I just couldnt get over the shocked faces of my clinic nurse rachel (Ilove her) and one of the docs..god nos i forget her name :p who had seen me 2 weeks ago.>ADMITTED and just blank stares.."really you were admitted" -doctor "Yup , 3 weeks, you saw me when I was in hospital"-me

Ya not a good moment.
But back to the point of this. I don't know whats wrong. I mean I know my lungs are getting ready to kick the big one, but last night I didnt sleep, I started coughing, then i was hot, then cold, then feverish, then I woke up with blue finger nails and realised..."damn" i need more o2, turned up the o2 ..then got shaky and out of breath..and got up cause it was like 5 am..took my predisone and all the other steriods and in an hour..was feeling better...and went back to bed and slept till lunch...sooo im assuming this is all predisone related..and YES now I remember why I hated predisone in highschool so much..i had forgotten after years on the same dose and no issues all this is really hard to get use to again. I just keep thinking PAGER GO OFF.

Im being impatient I know this. But I don't think Im patient enough to wait a year or over a year...I don't have a choice..but I keep thinking..how the heck am I going to be able to stick this out till then? I've never been this tired, out of breathe..and weak. I keep getting morbid thoughts ...planning my own funeral..because I don't know are they going to get me lungs in time?
The only postive news I have to report is I looked up my size and blood type and appartently its pretty common..soo I might not be screwed that way. Its just frustrating.. I told cf clinic Im now status 2 on the list..and they were like "OOOO any day now" ..and I felt like slapping someone lol ....Its like dont get me hyped up for something I want so bad ! Don't get me thinking of how awesome of a christmas gift that would be. I mean it could still be months...
Any chest pain and Im freaking out , I have panic attacks..literally. I never get panic attacks. Im SO afraid of my left lung popping again..and if it pops im screwed. I always have my cell phone on next to my head just incase so i could call my parents upstairs ..and call 911. my pager and phone are now extensions on my body.
Im down, depressed, and at this point wish all of us cfers could hangout..because Im lost. I don't know what Im doing anymore. I know if I go to emerg and Im not sick there going to think Im mental... ive done this before..actually september.. :p and i got lectured that I didnt have a lung infection..and november appartently i didnt have one either yet..my pfts keep getting worse and i cant breath..they say its all inflammation...SO STOP The inflammation>!!! if only it was that easy.

Ive stopped thinking about the bad that could happen after transplant, the many ways I could die during, after and post hospital stay. If it happens , it happens...im trying to write letters to everyone but its so hard..i dont no what to say....

I just want to be that spoiled little kid that kicks the floor and says " JUST FIX ME!" i dont want ur pity I just want to be fixed.
Its the fact that I walk from my bedroom to the bathroom and need to take a break. And walking upstairs from the basement to the kitchen is almost impossible. I don't know how long I can do this and Ive never thought that before. Everyone says Im strong. Yes I am strong , but I am because I have to be, I dont have a choice, either deal or die ..pick one. I've found just going with the flow is alot easier on my body then fighting with it or sitting in a dark cloud of misery. I keep getting called an "inspriation"...yumm Ive done nothing inspriation im sorry..staying alive to me is not that at all..its merly trying to survive. When I make world peace happen or climb everest...call me that then lol

a very smart person said to me
What doesnt kill you. Doesnt kill you lol the rest is bonus
Im in a weird mood.

Am I patient?

Im not. Everytime the phone rings I automatically think, LUNGS?? But clearly that hasn't happened yet. Probably just because everyone keeps saying it will be soon...it could 11 months from now. I actually dont no how "common" my size and blood type is soo if it isnt common I could be on this a while. I guess this week my breahing has just gotten soo bad I just was some relief. Its either my predisone dose is all messed up or Im actually getting to much o2, which is giving me Co2 posioning ..nice eh>? I have to wait around till monday for my RT to be working. So hopefully.
I took my o2 off while writing this because I honestly dont no whats wrong.. i mean I was short of breathe a week ago..but Ive literally doubled my o2 this week and even the slight physical activity like standing up is insane.

My brother got back from gagetown last night and we did part of the christmas tree...meaning i sat on the floor and passed him ordenments but i seriously dont have the energy to be getting up and down...just walking up 4 stairs out of the basement is going to be a bitch...gah. I miss my 30% lungs they were even better than the 20% ones I have now. I keep thinking..jesus if they go down any further im done...sooo fingers crossed.

Transplant letters

Im writing letters to my close fam and friends just in case "the bad" happens. It is kinda suprimely depressing. But I need to do it. So hard to say everything you want to to one person in a small letter. Im long winded i have issues with that.

I also feel like crap...i put my o2 up to 6 L walking today on pulse and 5 L on constant when I got to exercise. I was SOO out of breathe. Chayla was hilarious... " YOU take the subway?"...face was priceless. I was like "yup " lol "we dont drive down"...she was confused and thought i was nuts. Appartently when u need lungs walking long distances and upstairs is retarded lol..who would have thought? I no it is trust me it isnt fun...ill behappy when I get disability and maybe convince my dad to drive me instead.
OHH the other crap that happened today was that I had to get an ECHO at toronto general because i was in the hospital when my last one was booked..soo i walk all the way down to this cardio area..which trust me TOOK ALOT. then they tell me ..OOHH ya..we changed ur appointment to the upstairs clinic...go back the way u went then go up 2 floors..
I was not impressed. who has 2 cardio areas? i ask you? NOT only taht they didnt call the other floor soo then the other floor thought i was late or a no show so i ended up waiting around for an extra hour :P not impressed

Status 2

Im now status 2 on the transplant list...should I say woo? I dont no. I guess Im happy that they have "bumped me up the list" so to speak ..I mean Ill be honest I need lungs ..now would be good. Im SO afraid my lung is going to pop again. My left upper lobe has been bugging me ALOT. That is the side that collapsed in Feburary. Ive been taking alot of tylenol too. I don't usually take any pain killers so this week has been interesting and to be honest Im afraid to say anything cause I really dont want to go back into the hospital again anytime soon. Just my side does hurt and im getting out of breathe agian. I noticed it tonight.

Given that I was going from the house carrying my 10lb o2 conpressor thing, getting into my car when its freezing, into a hot car ...ya I had the whole "out of breathe , hyperventalting moment" but walking around in shoppers I was out of breathe the whole time! and then when I got home ..i walked up the driveway with the 10 lb thing into the house..and had a mini " HOLY crap I cant breathe moment" ...flash backs to febuary! I seriously thought my lung had collapsed ..scared the crap out of me. Because seriously if my entire left side goes down again..im screwed...i was over 30% then ..im under 25% now...i wont stay awake..theres no way. Dr. tullis basically agreed with me when I was in 2 weeks ago too..she said " well if ur lung collapses again, welll ....it wont be good" ya...not good as in ...ur scrwed lol...thanks. So ive been paying attention to my lungs ..more attention then usual i mean and its freaking me out. ..Pain here, pain there...coughing to hard..i just keep waiting for that moment ..were they really do pop again..that i cant talk or breathe .and need to call the ambulance....i dont want to relive that anytime soon.

I also have to keep undoing my bra..because i breathe better without it..any other girls foudn this? I mean my bra isnt tight lol sooo i dont get it...

I just want lungs. Now. Im not even upset about it anymore..im frustrated. Im tired all the time..and i was sooo out of breathe putting on pants this morning..seriously..friggin pants and i was hyperventating for 10 min! arg...i no theres tons of people lower than me..but seriously...i dont want to get any worse lol

Cf related Arthritis

So I woke up in EXTREME pain this morning. Ive had an idea that I have cf related arthritis for a while, but Im 100% positive now. I only get it every couple months and its usually when I wake up in the morning. It actually woke me up this morning it was so bad. Its always my knees. Shooting pains just all over my knee, it took alot for me just to get out of bed and standing and bending my knees was burtal.. i ended up slowing going downstairs and popping a ton of tylenol at around 6 am. Took an hour to work and since then Ive been ok. I looked up info on the ccff website and im impressed first they made there website better and theres actually info on it now. Appartently you can get 2 different types of arititis and im actually not sure which one I have. Appartently you can get it when you have a lung infection , or when your using alot of meds...etc. Soo who knows I just like having a bit of validation that I have another thing to add to the list haha and that Im not crazy.

PS I ate soo much food yesteday..the clinic put my prenisone up soo ive been eating like crazy. I almost puked last night because of all the food and even though i wanted to puke..i was still hungry .:S weirdest feeling ever.

CF issues to date:

A Pnemothroax
Meconium Illeus
CF related Arthritis
Hemoptysis (Not kool)
CF related Diabetes
CF related liver disease
Excess stomach acid
ABPA
Osteopenia
Distal Intensial Obstruction syndrome
Pancreatitis
and Im pretty sure I have nasal polyps but haha im ignoring it and pretending everythings ok . ( who needs a sense of smell anyways lol )

Have one sentence! "BRING IT ,CF >>>BRING IT, I GOT THIS!"

OHH stupid, stupid me

Sooo im retard offically...again. for the millionth time. I messaged moi's ex again, on facebook, why? I dont no. To be honest I dont really want to talk to him haha ,well i do ...but ...well its not the same anymore anyways. Use to be fun:) I highly doubt he'll ever be single again lol ..sooo ya..now...not so much... was I that bored? frig...wheres my girl friends when I need them?...oh wait its friday night..anyone with a life is doing something...i miss friday nights.
I put makeup on to put up christmas stuff....ya...lol

I also erased posts off my facebook wall..all the way back to 2006-2007...:P scary someone could read back that far if they wanted..haha all the way back to my first serious bf haha whos messages to me were still on there..god....highschool ....

My life has changed soo much in 4 years. Can't say I'm pleased with how its turned out so far. Im not a nurse,Havent been to uni, Im still at home, Unemployed and waiting for major surgery. WOO. My bro's 21 ..married, full time career ...planning children ...see why im poed? , hes going down the path I WANT SOOO BAD.

Self pity its disgusting...

At night

I woke up this morning with a start, My phone was ringing in the house,it was dark..i had a HUGE panic moment when I was like " OMG what time is it?"
and then automatically had a moment were I was like "shit, lungs?", thankfully no hahaha that didnt happen. Just freaked me out royally. I need to get organized...like get everything done thats gonna bug me if I dont have it done when I get the call...yes it could be in a year....i dont care..haha i need to be prepared..gotta finish writing letters

SOOO

Soo today one of my sisters friends said I should " keep a bag packed, she has a feeling"..now, this friend is usually right about this kind of stuff, seriously. Ive kinda gotten use to her " advise" sooo now im all parnoid my pager is gonna go off lol. We well see haha i guess if i get the call in the next couple days we'll no right? lol