This is the first time in a long time Im not so happy, not feeling so great. Im worried. I have grade 1 rejection however I know it has gotten worse. My pfts have dropped and I feel out of breathe walking up stairs and long distances again. Im angry that I keep track of all this , but doctors dont seem to take me seriously. Ive had fevers over the last 2 weeks, every syptom you can have for rejection I have basically had.
Also my intestines are A MESS. Before transplant I new my intestines werent doing so great but now, this past 2 weeks ...it just hurts. I look like Im preggo when I havent eatten anything...Ive had stuff for it but it just seems to get worse...its just pain. Theres other issues too, stuff thats major but I dont want to put on here. Its just making me angry, no one is stepping up and taking care of me....as one person said that was talking to me is that TGH is fantastic with transplants...but the after care...well thats sometimes debatable. Having to argue to be able to go to clinic when you know sometimes wrong is frustrating..I no my family doctor cant do anthing about this..its to COMPLICATED. He knows nothing about transplants. And the walk in clinic doctor I had to see , he basically didnt want to give me anything....even though he admitted something is wrong. I had to convince him to give me meds. Im frustrated. If something happens because of this....Im be so angry. I want this hell to be done with...when , when AM I going to get a break! just to be able to live no strings attached....is that ever going to happen?
Saturday, January 14, 2012
Wednesday, December 7, 2011
What Ive realised
Its almost been 10 months since my transplant and I can still recall EVERYTHING about that day and almost up to 2 months after. ITs been such a crazy year. I had to update a friend I hadnt seen since the last year of highschool and it went something like this " umm ive graduated college, but i got really sick , I got a lung transplant, umm ya..and now imback at school" and they went what!?? its funny how it fits into sentences now.." oh ya i just got a lung transplant in feburary, im good!" its like it was nothing when in reality it was everything. I remember sitting in my parents basement imaging what it would be like to get the call and then to be able to run again and jump up and down and i couldnt quite figure it out, I couldnt see it and then it happened and I can run and jump up and down and run up the stairs in my house. Yes I have rejection and trust me I am SO scared about it. Its onlyu grade 1 which means they dont even treat it at this point but just the thought of having to go through all that again , well it honestly turns my stomach.
If I had to I would but I never want to have to again.
Ive learned alot about myself however. I can do better public speaking then I could have ever had a year ago. That might be because Im so much older than everyone at college now and also Im not afraid of it, Ive been through so much now its like public speaking?? whats the big deal...ya i still mess up words and say "um " alot more than I should be honestly its been an eye opener.
I know what I like and what I dont and Ive started to actually defend myself and say what I want, Im sick of being walked all over. I know who my friends are, who actually care I exist. I know who loves me and who would have just sent a card if I had died. It opens your eyes.
Its also funny to be in a class with people who all want to be in the health field and realise more than half of them have no idea what nurses or other health care professionals do...if you dont like blood, or bodily fluid your in the wrong profession lol , or how everything is always looked at as it will work out. Its just maturity I guess, they havent seen or understand death yet. They dont understand that when people are sick sometimes they dont realise it and they also dont understand that not everyone wants to make it..some people will choose not to get help or in the CF idea....not get a transplant..and theres nothing wrong with that, its personal. They just cant understand it...to them your the sick person....and its funny for me to be in the position now where Im suppose to be helping the "labelled sick person"...what if they dont want your help> lol one of the first questions in my textbook was " Pretend you have a Chronic Illness and that your Dieing , how would you feel?" hahahhaa come on? is that irony or what.i was like " oooo hmmm i wonder how that feels can I just play back my life? its funny.
I realise what I believe in and how getting here has helped me. Im ready for life..finally.. I never knew people could breathe this well.. and its insane..it really is...i hope every CF gets to feel like this someday.... cause we deserve it.
Its Christmas and Im alive , thank you god, thank you angels, thank you donor. thank you doctors, thank you nurses, thank you to everyone. Life is a gift.
If I had to I would but I never want to have to again.
Ive learned alot about myself however. I can do better public speaking then I could have ever had a year ago. That might be because Im so much older than everyone at college now and also Im not afraid of it, Ive been through so much now its like public speaking?? whats the big deal...ya i still mess up words and say "um " alot more than I should be honestly its been an eye opener.
I know what I like and what I dont and Ive started to actually defend myself and say what I want, Im sick of being walked all over. I know who my friends are, who actually care I exist. I know who loves me and who would have just sent a card if I had died. It opens your eyes.
Its also funny to be in a class with people who all want to be in the health field and realise more than half of them have no idea what nurses or other health care professionals do...if you dont like blood, or bodily fluid your in the wrong profession lol , or how everything is always looked at as it will work out. Its just maturity I guess, they havent seen or understand death yet. They dont understand that when people are sick sometimes they dont realise it and they also dont understand that not everyone wants to make it..some people will choose not to get help or in the CF idea....not get a transplant..and theres nothing wrong with that, its personal. They just cant understand it...to them your the sick person....and its funny for me to be in the position now where Im suppose to be helping the "labelled sick person"...what if they dont want your help> lol one of the first questions in my textbook was " Pretend you have a Chronic Illness and that your Dieing , how would you feel?" hahahhaa come on? is that irony or what.i was like " oooo hmmm i wonder how that feels can I just play back my life? its funny.
I realise what I believe in and how getting here has helped me. Im ready for life..finally.. I never knew people could breathe this well.. and its insane..it really is...i hope every CF gets to feel like this someday.... cause we deserve it.
Its Christmas and Im alive , thank you god, thank you angels, thank you donor. thank you doctors, thank you nurses, thank you to everyone. Life is a gift.
Friday, October 7, 2011
New Post, New Rant
So yes im still here, VERY busy, but still breathing great and telling my donor thank you everyday. However, this is the first time in a while that I have a long rant....sorry be prepared, I need to vent!
Yesterday I had my Health Care in Canada Delivery course. The main purpose of this course to to learn "compassion" for patients, there families, and to know how the health system in ontario works. Funny for me to be on the otherside of the picture for once. HOWEVER, yesterday started out ok....and then the teacher started talking about how some lady in the states just got 2 hand transplants and IT WORKED. That was ok sounded kool you know, then they started talking about face transplants and it went from being informative to COMPLETELY sicking. They (my teacher included)started googling face transplants and then making fun of all these people and what they looked like, then started making fun of some of them that have rejection. I was so upset I was sitting in class trying to either not yell or cry...because the only thing i was thinknig of was all the crap I went through and what those people have gone through and theres all these people MAKING fun of them. What really made me aangery is that my teacher knows I've had a transplant . I was so disgusted, all the people in my class are going into healthcare and that is COMPASSION? I found it ironic that this happened in the only class where compassion is the main thing.
Not to mention what thehell was my teacher thinking? I'm still debating emailing him, because its a 3 h class and I walked out before 1 h of it was up, it was disgusting. Who makes fun of someone that needed that..or they were looking at before and after pictures and saying " well they looked better before " haha, SICK disgusting, wrong..ignorant. I couldnt believe it.
Me and my partner have now decided were doing our presentation on transplant...and im putting some pictires of mine into the powerpoint. Maybe that will stock them. It just made me upset because Ive had people say to me..."man you've put on weight" one person said not to me, but someone I know " man she really has packed on the pounds she better go for a run" ...and that was rude..
Yes I have put on weight, but I also am still on a high dose of predisonie because of rejection, I also have highblood pressure and the pills they put me on make me have huge water retention. I look puffy no matter what..BUT IM ALIVE, SO SCREW OFF to the people that want to say stuff like that..its just hurtful.
Yesterday I had my Health Care in Canada Delivery course. The main purpose of this course to to learn "compassion" for patients, there families, and to know how the health system in ontario works. Funny for me to be on the otherside of the picture for once. HOWEVER, yesterday started out ok....and then the teacher started talking about how some lady in the states just got 2 hand transplants and IT WORKED. That was ok sounded kool you know, then they started talking about face transplants and it went from being informative to COMPLETELY sicking. They (my teacher included)started googling face transplants and then making fun of all these people and what they looked like, then started making fun of some of them that have rejection. I was so upset I was sitting in class trying to either not yell or cry...because the only thing i was thinknig of was all the crap I went through and what those people have gone through and theres all these people MAKING fun of them. What really made me aangery is that my teacher knows I've had a transplant . I was so disgusted, all the people in my class are going into healthcare and that is COMPASSION? I found it ironic that this happened in the only class where compassion is the main thing.
Not to mention what thehell was my teacher thinking? I'm still debating emailing him, because its a 3 h class and I walked out before 1 h of it was up, it was disgusting. Who makes fun of someone that needed that..or they were looking at before and after pictures and saying " well they looked better before " haha, SICK disgusting, wrong..ignorant. I couldnt believe it.
Me and my partner have now decided were doing our presentation on transplant...and im putting some pictires of mine into the powerpoint. Maybe that will stock them. It just made me upset because Ive had people say to me..."man you've put on weight" one person said not to me, but someone I know " man she really has packed on the pounds she better go for a run" ...and that was rude..
Yes I have put on weight, but I also am still on a high dose of predisonie because of rejection, I also have highblood pressure and the pills they put me on make me have huge water retention. I look puffy no matter what..BUT IM ALIVE, SO SCREW OFF to the people that want to say stuff like that..its just hurtful.
Friday, September 9, 2011
School Time and all that jazzz
Soo back to school for pre health. Honestly I love it..it feels like what i was suppose to be doing all the time. I guess it doesnt really feel like work cause im interested in it. All the other times ive been in school homework has been soooo boring..and yes some of these classes are a little boring..but I do the work and I get it done fast cause this is the path i want to be on..i want to be a nurse. i might still go for RN. Appartently the RN course is going to be in Barrie next year so instead of going two years in barrie..two years at York in Toronto it woudl all be here...sooo we will see..either that or just RPN I dont know guess it just depends how everything falls.
I also applied for a receptionist job at a Youth Services Group in Barrie. Its only about 15 h a week and all in the evening..which would be great because I have classes till 2 in the afternoon. If i get the job Im gonna tell OSAP that I dont want it now, Id rather be able to work and save money that way then get into huge debt with OSAP and to be honest at this point I need maybe a thousand dollars..OSAP wants to give me 5 thousand....which I dont need..and well ill just end up paying interest on money i dont even want.
Also i have rejection...grade 1 acute..so its not bad but i want them to figure it out my spriometery has been done and yesterday they called and told me my liver is acting up so I might havfe to go see a GI doc soon.
thats basically it...<3 u guys
I also applied for a receptionist job at a Youth Services Group in Barrie. Its only about 15 h a week and all in the evening..which would be great because I have classes till 2 in the afternoon. If i get the job Im gonna tell OSAP that I dont want it now, Id rather be able to work and save money that way then get into huge debt with OSAP and to be honest at this point I need maybe a thousand dollars..OSAP wants to give me 5 thousand....which I dont need..and well ill just end up paying interest on money i dont even want.
Also i have rejection...grade 1 acute..so its not bad but i want them to figure it out my spriometery has been done and yesterday they called and told me my liver is acting up so I might havfe to go see a GI doc soon.
thats basically it...<3 u guys
Wednesday, August 3, 2011
Update time
So life has been so busy. SO busy that I havent been on here in forever.
So News Flash Im crying right now. Ya ....emotional crisis. Im just catching up on everyone and hearing bad news about people and dealing with crap side effects myself..and YES im sooo happy im alive dont get me wrong..but u get in that mood where its like ..what the heck did I do? ... did i rob a bank, do i rob old people or steal candy from children...NO ..sooo WHY does this life have to be so hard. YES self pity moment.
So i have been having side effects. Puffy..puffy..puffy. ok, then my whole body goes BRIGHT SUN BURN RED. Appartently thats a side effect of too much cyclo. Sick to my stomach. Hand cramps that left me crying..., leg cramps doing the same thing.., i wore sunblock sooo much..like friggin 60 and re applied a million times...wore layers of clothing..a hat..sunglasses..and i still burnt....frig. and my wonderful female probs...suppose to see a gyno in toronto..but well they havent gotten aroud to that...grr. ....i could keep going but i wont... would i get transplant again..YES. just..frig....why is everything so hard. They have offically wiped my immunesystem out a couple times now...and its scary. they called me and said..the clinic that is " ummm ya...soo u have no immunesytem right now, stay away from sick people, if u feel sick so straight to emerg" ...ya omg! Im coughing...i think im might actually have lung infection im not sure.. but then i was taken off my antirejection meds or most of them for july because i have almost no white blood cells left in my body. sooo my spirometer readings are lower and well in my head theres flashing be RED words of REJECTION. Im keeping track of my numbers if there still low tomorrow i need to call and figure this out. OH ps i also have high blood pressure now...and was getting killer headaches daily..i was popping tyentol like candy again....heres to hoping that stays away....SOO thats my rant...im freaking out about friends.....scared for myself...and am living in a self pity bubble for today....ya....
Other then that life has been good... im glad im alive...just sometimes u just want to scream into your pillow..why me?
So News Flash Im crying right now. Ya ....emotional crisis. Im just catching up on everyone and hearing bad news about people and dealing with crap side effects myself..and YES im sooo happy im alive dont get me wrong..but u get in that mood where its like ..what the heck did I do? ... did i rob a bank, do i rob old people or steal candy from children...NO ..sooo WHY does this life have to be so hard. YES self pity moment.
So i have been having side effects. Puffy..puffy..puffy. ok, then my whole body goes BRIGHT SUN BURN RED. Appartently thats a side effect of too much cyclo. Sick to my stomach. Hand cramps that left me crying..., leg cramps doing the same thing.., i wore sunblock sooo much..like friggin 60 and re applied a million times...wore layers of clothing..a hat..sunglasses..and i still burnt....frig. and my wonderful female probs...suppose to see a gyno in toronto..but well they havent gotten aroud to that...grr. ....i could keep going but i wont... would i get transplant again..YES. just..frig....why is everything so hard. They have offically wiped my immunesystem out a couple times now...and its scary. they called me and said..the clinic that is " ummm ya...soo u have no immunesytem right now, stay away from sick people, if u feel sick so straight to emerg" ...ya omg! Im coughing...i think im might actually have lung infection im not sure.. but then i was taken off my antirejection meds or most of them for july because i have almost no white blood cells left in my body. sooo my spirometer readings are lower and well in my head theres flashing be RED words of REJECTION. Im keeping track of my numbers if there still low tomorrow i need to call and figure this out. OH ps i also have high blood pressure now...and was getting killer headaches daily..i was popping tyentol like candy again....heres to hoping that stays away....SOO thats my rant...im freaking out about friends.....scared for myself...and am living in a self pity bubble for today....ya....
Other then that life has been good... im glad im alive...just sometimes u just want to scream into your pillow..why me?
Sunday, May 8, 2011
Its been a while again
I realise life has gotten busy again. I love it but at the same time i miss keeping up with all my cfers. I guess the online community was such a huge outlet for me over the past 2 or 3 years that now that I can go out and do stuff again its weird not knowing what is going on with everyone. People have gotten there transplants and I havent even known. WEIRD.
Today my body is having a weird day. i woke up with a fever and achy. My leg keeps twitching to which is really, really annoying. My blood sugar has also just spiked to 31 my highest record ever. not so good. So i just pumped myself full of more insluin hoping my BS goes down.
Again as Im typing m realising how after a full day of trying to keep everyone happy, friends, family, etc. and keep my social life balanced that im truely exhausted. and honesty im going to bed right now and just going to sleep..as tomorrow is just as busy. ..love all of u ..miss u
Today my body is having a weird day. i woke up with a fever and achy. My leg keeps twitching to which is really, really annoying. My blood sugar has also just spiked to 31 my highest record ever. not so good. So i just pumped myself full of more insluin hoping my BS goes down.
Again as Im typing m realising how after a full day of trying to keep everyone happy, friends, family, etc. and keep my social life balanced that im truely exhausted. and honesty im going to bed right now and just going to sleep..as tomorrow is just as busy. ..love all of u ..miss u
Wednesday, April 27, 2011
Update TIME
So WOW it seems like forever ago that the transplant happened..realistically it hasnt been that long. I guess its just all the changes that has happened that makes it seem longer.
My sister bought a house which I am moving in with her in june. My grandparents who we thought would never move are downsizing..sooo more moving around the same time. My brother is married and moved into his house in petawawa ..ya thats spelt wrong ill fix it later) so hes gone and all his stuff is out of my parents house. Hes also on his honeymoon this week with his wife..soo hopefully there having fun in punta cana. My grandma had cancer but after her kidney was taken out she is alright. My uncle and aunt are still jobless but hopefully that is fixed soon.
I have an AMAZING boyfriend. Seriously! Hes amazing, none of this health stuff seems to freak him out to much, which is amazing! He also spoils me to all heck :) and hes sweet and caring ..and trust me I could use this whole blog just talking about him lol :) im so lucky to have him. Its strangle if someone told me right out of transplant a couple weeks out that I would find someone and be happy and have a boyfried I would have laughed at them and told them they were wrong.
Im going back to school in the fall I think. I got into prehealth science so I think I'm giong to do it. Ill regret it if I dont, either that or work if I find a job I actaully would want.
I went RUNNING THIS WEEK. LIke actually RUNNING. I have one week of rehab left then im done and I dont no what I am going to do with all the spare time lol. Scrapbook? I might actually go down to a couple of the walk in clinics or my local doctors office and see if they well let me do volunteering there till im "allowed" to work again. At least then my resume doesnt look as bad. I think its a good deal , i do all there filing for free..who likes filing lol come on.
I have such an amazing family and friend.s...im blessed. Maybe this whole thing was crazy..but i have some amazing people that love me and im lucky because of it.
OHH and i got in the local paper! Ill scan it and post on here later ..FRONT PAGE BABY>lol
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