I'm back in a normal rhythm

I'm back on a normal rhythm, it's so weird last night I was having the most intense chest pain was short of breath and my heart was pounding and this morning I'm just sitting on the computer and all of sudden I feel it go back to normal , and that was a few hours ago and it's still notmal, I'm so happy I guess those pills where working after all I just needed to be patient. 

Went back in AF (atrial fibrillation - funny heart rhythm)

So I went back into AF the other day so I went upto hospital as I was no longer on blood thinners anymore, they tried me on metoprolol fast acting while I was up there but that didn't seem to be working, so they discharged me with sotalol and some blood thinners not before the doctor gave me a great speech about how lots of people live comfortably in AF whatever !! Like to see my doctor have a bit of AF before he trying tell me that, I use to go in AF all the time before transplant so trust me I know what it feels like, any way they were going to keep me in AF and just at a lower rate with this pill if it didn't take me out not if I have my way though.

I get it it's easer them putting me back into a normal rhythm ect but I didn't go through having a heart transplant to just go back in AF again I want them to get rid of it all together,  ok AF annoying and makes me short a breath ect it's not that I'm so worried about it's what comes next, the last time I was in AF before transplant it turned into heart failure then a doctors telling me I needed a new heart so I do not want any of that happening again so I want them to fix it now before anything else happen, asking to much probably but after 20 years of been sick I think I'm allowed to be a little unreasonable. 

So sine iv been in AF it's been making me so tried and iv been getting real short of breath, and to be honest I don't think these pills are even working my heart rate is still sitting in the 150ish and last night was the worst I was having the worst chest pain ever and I could just feel my heart pounding in my chest I nearly went up to the hospital but then I remember how much I hate that place and it always interferes with my life they make u spend a few days up there I have to much that needs doing at the moment.

So the plan is I go to CCU on Tuesday for a ECG to see what the hearts doing then, Doctors may need a ECG to diagnose me but I know I'm still in AF you can feel it , so if I'm still in AF by Tuesday then I'm going to make them do something about it, I not going to let my health get in the way of my life again eg shortness of breath been tried or the time, I have my practum coming up in a week so I Want it fixed by then I don't want it effecting my performance on something I get marked on. I'm going to ask if they can shock it back I get they like to try pills first ect but the longer I stay in AF the harder it will be to get me out so that worried me a bit and the more pills they try the more time I have to spend with theses symptom so I just want it fixed now, so will just have to see how it goes on Tuesday .

O and on a happy note 60 days still I go to Aussie ( better be fixed by then ) and 50 days till I finish my diploma ( still will have another two years to get degree) but they don't do mid year intakes for degree so I will have 9 months of before my degree starts . 

Auckland 5 year check up

So Auckland went well better then I thought it would, I'm not in heart failure or anything like Rotorua said I was, I'm really pissed of at Rotorua for that I mean it's was even put on my discharge letter and everything, I would have rather been told we don't know then be told that and have a million things go through my head, i mean the last time I was in heart failure I needed a heart transplant so it's not like telling me something small or anything .

So the reason iv been getting swollen ankels is one of my medication which he has lower, and see if that helps but he never took me of furosemide, I guess if that gets rid of swollen ankels I can just go to my GP and see he she will take me of it, I'm still on 80mg of furosemide.

And the Avril fabulation is whats was causing my shortness of breath so it makes me wonder how long I was sitting in Avril fabulation before anyone picked up on it, I have to anmin that sine they pulled me out of AF the shortness of breath seem to have done, they said something like a bad flu or cold could have put me into AF I had lots of issues with AF before transplant didn't relies you can still have issues after transplant. 

On the up size they have taken me those stupid blood thinners yay more tattoos lol only joking, as they userly do they dropped some pills and added new ones to the mix and I'm not due back to Auckland for another year, I have to see Hamilton in between but that's ok can do that one in a day .

I'm out of April fibrillation

So thought I better do an update so as talked about in my last post I was in AF and they were going to put me on a new pill to see if it would take me out of AF so the good news is that iv now dropped out of AF so wont need to be shocked and don't have to stay in AF till I see Auckland so that's always good. 

So I got my appointment in the mail from Auckland so am due up to see them in a few weeks so I'm happy to say as I'm over been told something new depending on which doctor I see so it will be good to get one Solid answer. 

I have one doctor who thinks I'm in heart failure again, another who thinks I'm not, another who thinks it's the LV, another who tell me the only reason for the swollen ankels is because it's normal for transplant pt, another doctor who tell me it's non of those it was the AF all along but I was been treated for heart failure by mistake so I will be happy when Auckland can tell me what up and not getting lots of mixed answer. 

Still having big swollen ankle issues and still popping a few water pills a day but the shortness of breath has gotten way better sine they pulled me out of AF so makes you wonder how long I had been sitting in AF before they notice? Everything else health wise is the same. 

I'm in Avril Fibrillation

So the good news is there a good reason for my shitty breath I'm in AF and bad new is just that I'm in AF . So I went to see my GP about my shitty as breathing cos I could feel sumthing wasn't right and when I was liying in bed the other night I felt like I was in AF and then I was like nah can't be and flagged it of, I got my father to take my pulse the day and he thought I was in AF too but I was like nah he's wrong he doesn't know what he's on about, I should have listen I mean he does have AF issues but no I was like no I'm been in AF before I know what it feels like and no I'm not in it, I can't be. Anyway so I went to the doctor told her how bad my breathing had got little things like walking to the other end of the house I was getting short of breath, she took my pulse and sure enough I was in AF .  

So she sent me up to the hospital, so they did a ECG and confident it was AF so as I was in AF I had to be put on blood thinner as you are at high risk of stroke when you are in AF so they started me on a blood thinner it's a new one though unlike warfine you don't have to have blood tests it's called dabigitran which I'm kind of happy there not blood test it's not that I scared of needles or anything like that I just always forget to do my blood test I have like 3 blood forms sitting at home to do my tac level but I just get busy and life gets in the way . 

Any way sine I was in AF I would have loved them just to shock me back into a normal rythem and send me on my way but no they never do it the easy way do that , 

So they have started me on a new Beta blocker called sotalol and taken me off metoprolo so the plan is that hopefully the sotalol can drop my heart rate and if I'm lucky put me back into a normal rhythm I don't have much hope for it though as I'm still sitting in the 100's which would be fine if I wasent in AF but in AF it's just not fun and there no chance of me dropping out of AF when my heart is racing so much . So they keeped me in for a night gave me a choice stay in till they have the heart right or just cum bak for ECG and see her that way intill they can get the heart right.

Any way I go back up to the hospital on  Monday for a ECG and see whats my heart is doing then it's probable a matter of just "fine turning" my meds to see if they can get it low enough to be liveable. 

So when I go upto Auckland in April if I'm still in AF she will look at shocking me back so she better don't wont to be in AF .

Ever time be4 transplant when they tried taking me out of AF with meds it never worked but who know it might be different with a different heart . 

Im slowly deteriorating

My health is slowly deteriorating I can feel it, like today my ankels were Quite swollen I could tell cos my shoes where a bit tight on me, and all day I can feel my heart pounding and I took my pulse and it was 132 to which is pretty high for me now sine I'm on 95 mg for Beta blocker , and my breathing has just been horrible very short of breath very easily and at one time I was just sitting there and I started to get short of breath, I even thought about going up to the hospital today that's how shit I felt but my emotional well been can't take another doctor telling me no that's not whats wrong with you this is. There stupid doctors forget that every time some one comes up with something different wrong with me I'm not just another sick person that will get better and they will move on iv been in and out of hospital my whole life it effects my emotional self been told something different every time. 

So I was in hospital last week I went in cos I felt like my shortness of breath has been really bad latly, so they did all there test and bloods as they do most of it was just the same old stuff they do every time bloods, ECG, ECGO ect but then I got to see this really good doctor he wasent good cos he knew a lot he was good because he was so honest and told me what he knew and told me what he didn't know and I would have to wait for Auckland and he even told me I'm probable going to here lots of different theory's form different doctors, but the basic of it is that my VF is not pumping as well any more and it's effecting the out flow of the blood and that the heart a mussel looks a bit thinker then it should he said it looks a bit like HCM ( what I had before transplant)  so that's not very good, and he said that depending on how much fluid on board I have can effect my shortness of breath , so that's the 411 of it but I need to see Auckland to get any good answers to know for sure, I don't think there much they can do for it , but iv decided not to believe any doctor in till I hear it from Auckland them self .


 

  

 

 

 

Sick becoming normal

I started to make my bed tonight and I started to get short of breath which is now a normal thing for me getting short of breath of small things, I sat down and thought about it when it happened that I didn't really pay attention to it and just treated it as "normal" and I started to think when did things like shortness of breath and swollen ankels sudden become normal again to me.

It's all started in sept last year when I started getting shortness of breath and was admitted to the hospital for it and that was when they told me I was having issues with my LV not that any one would answer any of my question about it and told me I was in heart failure now here I am months later getting shortness of breath on a regular basis and swollen ankle and I'm back to where I was before transplant  in the way that iv got use to been sick again that I don't think about it if I run out of breath get swollen ankels get chest pain or feel dizzy is that really going to be my life again,my transplant team wont answer any of questions Intill my apointment as they wont to do it face to face which I understand  so I don't know the details of my health yet but it sure has me wondering.

Im now popping the same amount of beta blocker that I took before transplant and I'm just about on the same amount of furosemide that I was before transplant that I'm getting shortness of breath, dizzy ness , swollen ankels it really make me wonder I am really going to just go down the same truck again that I did before transplant slowly get sicker and sicker intill I'm so sick that I can't have a life again what a waste of even having a transplant if that's what it's going to come to again . 

I some wish at times that I was not delt this hand of fate it would have been nice to just be that health kid like everyone else 

Life

So what new with me I'm on Xmas holidays at the moment and I'm official half way through my Diploma never in life life did I ever think I was capable of getting this far so far so good iv gotten all "B" so far but I don't care if it's not a "A" or anything I would have been happy with "c" didn't even think I was Capable of getting a "B" as sum one told me "c" get degrees I get the same Qualification as the next person whatever I get as long as it's a pass . So just been working at spotlight over the holidays and go back to tech end of Feb or round that time .

And as for my health who knows no one really tells me whats going on with my body anymore, they can hold back from me all they like I may not have a doctors degree but I have something better I know my own body better then any doctor and I know when something's not right iv lived with a bad heart all my life , I get swollen ankles on a pretty regular basic now and it's always the left one. they tell me that some transplant patients get Fluild on board witch is probable right but when I read my letter they say stuff like " does not have a normal heart function" and any time I try asking someone about it they flog me of to each other Rotorua tell me to ask Hamilton, Hamilton tell me to ask Auckland act so I'm due in Auckland in Feb so that will be good can get them to answer some of my question sine everyone else seems to chicken shit to tell me or maybe they just don't know who knows? . My GP said that my left Side of that heart is not pump as well anymore or sumthing like that but didn't really give me details . 

I wish at times I could just rewind my life back a bit, I spend so long of my life sick getting sicker and sicker then I finally got a new heart and I spend so long recovering from the who tranplant thing then I finally got everything that I ever dreamed of a normal life a health life it was a dream come true and I Fought so hard to get there , it's like life decided to take it all away from me again and bit by bit it's taking my health new life away from me . 

Before and after when I get swollen ankles

Sleep o how i miss you

My sleep has gotten so much worst latly some times ill be up to at least 5am before that it was like maybe 2:30 - 3 am , i use to blame it on my drug while i never sleeped witch proable doesent help but i was thinknig back the other day iv always had issuse sleeping not just after transplant but before aswell, i dont know if that was cos i was in heart failure and u can never lie down at night without feeling like ur getting drowned or what is was.

It doesent help that some times i will have to do a all nighter just to get my homework done and its bad enough that i dont sleep but when im making myself stay up all night my body starts to get use to staying up all night.

Well i was talknig to my social working today he said hes going to see if he can talknig to my doctor about getting me some sleeping pills, i bet it wont work but anythink worth a try so over not having enough sleep, i get angry at my doctors that there not willing to give me anythink to help me sleep but my biggest issuse i have with sleeping is all the mebs they give me, ok proable not the only issuse but i gotta believe its a big part of it.

Wish i could "Quit" the hospital

Not very happy with doctors,hospital the who medical world at the moment so long story short,
I was in Rotorua hospital a few back for shortness of breat, the doctor told me i was in heart failure so i was liek WTH worryed what my furture would be like ect they put me on beta blocker and furosemide
Went to hamilton doctor soon after for a check up he didnt have any of the paper work so didnt know if i was in heart failure or not but said he ddint think i was, was going to chase up ecgo and get back to me never did so i emailed hamilton but didnt answer any of my question so whatever just left it there .
Went to GP she said she ddint think i was in heart failure so i was like kool no need to worry
Got swallown ankles emailed hamilton, so now they thought i was in hear failure again so went throught the whole WTF moment again.
Then Auckland rang and said they dont think i am so was happy again cos i was like there the transplant team they must know what there talking about alot of pt get fluid on board sometimes they tell me.
So even that im pretty sure they are right , in the back of my mind im like well they havent seen me just talked to me on phone so i still dont really know 100% witch doctor is right and its fucking me off .

Wish they would make up ther bloody minds, and let me knows what going on sine im not dur to see them till April next year.
I so ready to be like fuck you hospital dont care anymore.

Heart failure you sux

so study still going good just about half way though the year not quite, really hard but im gettingt there i refuse to give up even if i fail ill just do it again, i havent failed anythink lucky.

So my ankles have been swelling bad latly sine now that im in heart failure i guess its just somethink i gonna have to expect now, my doctor up my pills so hopefully that will hel the swalling and is going to call monday and see how it is
iv tried asking more questinon about this whole heart failure thing will it get worse? will i go down hill like the way i did before transplant? is it just gonna lead me to the same place as before? needing a transplant again? but my doctors are very good at not answring my question he said next time im there he will asnwing them all for me i realy dont know whats wrong with emailing them to me but whatever if thats what he wonts to do fine, at the moment i know jack all about what heart failure is gonna mean for me in the future
I been find my doctor very frustrating they wont tell me anythink bloody annoying before transplant they use to sell me i never took my health seriously and did understnad the serious ness of it and now that im interested and wont to know more that what tell me very annoying. .

Hospital visit

Well had my hospital vista to Hamilton the other day that was just a waste of time, they were ment to see me re the heart failure thing but Rotorua hospital hadent sent them any notes or anythink not even a discharge letter so wade ( my cardiologist) said he couldn't really do anythink without seen the notes ect and he wonted to see the echo Rotorua had done on me as we'll . 

So he just did his normal check up for now all his test ect as he does, and there gonna let me know if any mebs ect need changing , I asked if he could give me some sleeping pills that was a big fat no ,to think he asked me why I wasent sleeping hello it's the shit u give me to take every day , my GP wont give them to me either cos she thinks there addictive whatever I couldn't care less it's the worst she's worried about go hard I mean look at all the bull shit they make me take now anyway, all I wont is to be able to have a good night sleep so in not tried ect the next day .

How do i manage to put not one heart but two hearts into heart failure and im only 25

Well the good news is they found out why im getting shortness of breath but the bad news is it's not really the answer I wanted, I went to my GP she sent me to the hospital the hospital did there all there test as they do and the doctor said iv gone into mild heart failure so she put me on beta-blockers and furosemide, the doctor said it's caused by all the scar tussie from the past rejection.

I feel really bad because when I first had my heart transplant I felt so much better I was so stubborn I stopped taking my pills and decided I didn't need them and well that backfired on me I ended up in rejection, they pumped drugs in to me and I was better again before I knew it fast forward 4 and a half years later and now I'm having this  issue and I don't really have anyone else to blame but my self. I shouldn't really be putting this on here because I don't know who reads this and I guess I'd really dont want the world to know what an idiot I was when I first got my heart ,but I guess you can't change the past. When I first got my heart I was healthy like I'd never been before I had been sick all my life and all of a sudden I got this new life and all I wanted to do was everything and anything except what I was meant to be doing and I didn't care what the doctors had to say, it is different now of course I wouldn't dream of doing that now but it's too late to change the past.

O and I got a another tatoo a heartbeat and the number 214 because 214 is the number heart transplant in New Zealand .

Studies hard health not so good

We'll I'm about 2 month into my early childhood now and it's so full on don't get me wrong I'm liking it but just so many assessment at once and some times i like i dont know this shit, so far iv passed everythink god knows how and im just going to keep at it and fouce on the end result i feel like iv put to much effect into my studdy so far to quit now.

And as for my health its been pretty shity later i had a really had flu witch im over now but i have been getting shortness of breath witch is reallyy getting to me i mean i had this heart transplant i findally got this new life this health and dam its like someone took it away from me walking to my car im runnig out of breath even the other day i run out of breath making my bed when i hd my heart heart transplant of the first thing i was so happy about was i could make my bed aagain without running out of breath, so i went to my GP about it my BP and HR were normal she sent me for bloods and chest x-ray they were normal she pretty much said to me she doesent know what it is , so i emailed helen the transplant codernator. she emailed me back and said its proable just the flu i had but email her back if it doesent go away.  i dont think it is cos the flu i had i ddint have couching running nose ect it was just high temps and aching body but any way ill give it a go and see if its just that my GP rang me back to see if i still had shortness of breath i told her yes she said she was gonna ring back in a week and see if  its still there so ill give it a chance and see if it goes away but if it doesent someone bettter do somethink about it, feel a little like im getting brushed of but ill give them there weeek or so before i start complamming and go back

And as for my mental been pretty shit latly too but i donrt think i will go into that one, dont know  who really read this and its not somethink i wont the whole world to know about.

Pain killers and Life

Painkillers my weakness my whole if i had a issue the answer was always pop a pill its all iv know , i was sitting there trying to think back to were it all started with me and my painkillers addition began if you could even call it that , i take painkillers because i am in pain and iv felt real pain and i dont wont to feel like that again , but what kind of person take 3 to 4 tramadol in one go just for a slight pain, iv taken pain killers so long that one or two or three just doesn't feel like it does the job any more so i have to keep taking more and more just to do the job.

I started taking painkillers a few years before my transplant about 6 years ago now and i cant even remember what i first got given them for i first started of with codeine and got a taste for it on how well it worked and it could take my pain away then i was given tramadol another time for sum think else, on top of taking the pain away they would make me sleepy and i loved it. when i sleepy cos when i sleeped  i couldn't feel pain and two when i was a sleep i forgot about been sick i was never sick in my dreams i was a health young person doing everything and anything i wonted and that where it al began.

Then of course came my transplant and i was given a taste of even harder painkillers and don't get me wrong right though this whole time i was taking pain killers for genuine pain it was not to get all high or anything like that and as time went along i had to take more and more pain killers just for them to be able to work for them to take the pain away , and here i am today getting pain killers mainly tramadol on tap due to my back pain witch is real pain i take pain killers like there no tomorrow i do have a bad back that's the reason the doctor gives me pain killers but i use them for everything and anything and i don't think i could go without pain killers all together cos been in pain is not fun but were is the limit is a good question i should be asking my self .
As i wont to work with kids iv made the choice i need to cut down on the pain killers not stop them cos i do need them but be able to know when enough is enough 

As for life i finished and passed my pre degree course and have been on holiday and  i started my early childhood course next week bit nervous but im going to put my mind to it and do it if its the last thing i do, they say you can do anything if you put ur mind to it right ?