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.
Wednesday, December 15, 2010
Tuesday, December 14, 2010
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
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
Sunday, December 12, 2010
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.
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.
Saturday, December 11, 2010
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.
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.
Wednesday, December 8, 2010
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
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
Tuesday, December 7, 2010
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
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
Sunday, December 5, 2010
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!"
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!"
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