Been perpeared for illness

When in life do u get prepeared for illness been sick from a child and again whwn sick in my 20's . My doctor from a young age showed me how to take pulse or what the signs of a heart attck was or how to swallow a pill, what to do if a faint or get chest pains, or run out of breath, but never did I get emotionally prepeared for living with an illness. 

Half my life was stolen from illness, hospital visits, medical apointments, doctors, test and all the rest then my saving grace come along my new heart my 2en chance which was amazing, 5 and a half years later and here I am back in the same place again. I think that's the hardest part is been given something I dreamed of my whole like " a health heart" then it been ripped away from me . 

Auckland soon

So I have an apointment in Auckland in a week, so I'm hopping they they can fix me, like last 4ish months I have gone down hill but the last month or so I have deteriorated big time. I can't go anywhere without having to stop to catch my breath and I'm not talking long distances either, walking to my car, walking around town, walking around the super market every thing has become an effect for me now . I get dizzy really easily now I don't know if it's the AF, the fluid or what it is I'm just hopping it's fixable as I'm feb up I feel like I did before transplant back to losing everyday human privileges. 

Rotorua did a holture monitor on me a few weeks ago so that's while Auckland want to see me. Rotorua hospital also put sum iron through me the other day which said may help with breathing, the whole iron help takes oxygen round the boby and I'm always low in iron so hopefully that helps.

Anyway I guess I will just have to wait and see what Auckland have to say.

I'm official sick of it

I'm officially sick of been sick it just keeping getting worst and worst, I'm talking about my heart hear having lots of AF issues lots of breathing issues can't go any where without running out of breath and in the last few months it's gonna worst, I blame the AF. 

Everything and anything takes effect lots of breath and energy. When I go to work walking from my car to work I have to stop so many times just to catch my breath and it's not even that far. Then I finally get into work I have to stand there pretending I'm doing something so I don't look like an idiot and so my boss doesent get upset at me for standing there and doing nothing, when really all I wanted is a min or so to catch my breath. Then there everything in between that every time I run out of breath I have to yet again try look busy so again I don't look like an idiot catching my breath . Pulling out my phone in public is always a good one I look busy and people don't took at me funny when I stop . You know what it would just be easier if people didn't steer at me for stopping . 

I'm so over it same days I just feel like going nah fuck it, I'm over this medical shit , u amazing pills, tests and all the rest havent fixed me I'm still can't go anywhere without having to catch breath , I hold fuild on board I thought this transplant is meant to be my saving grace so why do I feel like I'm sick again . 

I'm sick of fighting some days I do really just feel like giving up . 

Shortness of breath welcome to my life

I feel like my health is going backward, yes I'm I greatfull for this new heart and the many years I got to enjoy it and that I'm alive and everything in between but you know iv going to have a big complain I think after been sick most of my life then sudden getting this great health life then losing it again slowing, I have the right to complain normal health people complain all the time about things they take for granted so I'm allowed, 

I spend so much of my life sick and sick was my life I didn't know any other way , then I was given this amazing gift and life was great there for a few years then everything( health wise) slowly started to go down hill again and even worth of recent, I take a look at my life now ok what happened to this great amazing health heart, why am I getting shortness of breath again we not talking long either while am I getting short of breath walking from my car to my work in the morning, while do I have to stop in the middle of town and pretent I'm on my phone just so people don't look at me funny because I'm stopping to catch my breath, while am I taking so Fursise and beta blocker again why am I getting dizzy again and don't even get me started on the blood thinners and the heart rynthem issues, I feel like someone pushed the fast rewind button on my life and took me back to when I was sick again. 

You know the worst part of been sick or feeling sick it's is not the physical side of thing ok yes that sux but it'd the emotional side trying to process what happen to you.

Complain over , now I feel better. 

Questions & furosemide I hate you !!

So I was getting sick of taking stupid furosemide and on my last check up to Auckland I asked them what was causing my swollen ankels and I was told it was one of my meds so I email Auckland and asked if they could take me of the drug that was causing the swollen ankels so I could come of furosemide, so they let me come of the drug causing my ankels to go up and replaced it with something else and said we could talk about maybe reducing my furosemide. Anyway me been me I stopped my furosemide anyone cos I hate the stuff !! So three weeks later I was still fine but thought I better go tell my doctor( she would have a nicer reaction then Auckland ) so went to her in stead of emailing Auckland and she was like if you fine you might as well stay of it. 

A week or so later I started getting short of breath again not just a little bit a lot was just sitting down and it was real bad so of I go back to doctor and she put me back on furosemide this time I didn't mind cos I like to be able to breath. 

Last time I went to Auckland they told me no you are not in heart fauture it's just this med that's cause swollen ankels and it was the AF that was causing shortness of breath well I'm not on that pill anymore and I'm not in AF any more so what is causing my shortness of breath ???? Good question and while did it get worst once I stopped the furosemide and get better when I started it  !!! Now that is a question someone needs to be asnwer me, my GP still things I'm in heart fature is is treating me for heart failure AUckland say no and yes they do know best so if that's the case while am I getting symptoms like I'm in heart failure and why does my GP think I'm in HF? !!! 

Someone needs to tell me why I need furosemide and whats cause ding the shortness of breath if I'm not on it if I'm not in heart failure like Rotorua hospital and my GP think I am them why am I ?? And while can't I live without furosemide!!! 

O and I'm low on iron again fainted at work the other day cos of my low iron I don't eat much red meat so now I have to go back on stupid iron pills hate them they give u a sore stomach.

Found this pic online thought it was neat 

Life & Aussie

We'll I haven't written for a while thought I better do a update , well I finished my diploma, never ever Eva thought that was possiable I want to go onto the degree but they don't do mid year in takes so I have 8 months to fill in. 

I did a trip to Aussie that was great had lots of fun, went to Melbourne went out and saw more of the city this time and saw more things then I did last time I went to Aussie so I had a blast .

So as I have 8 months to fill in I'm am now looking for a job in till then  I'm just doing whatever work I get between spotlight and the after school care program I work at which is not a lot of I really need to get a job as my bank balance is sure feeling it , I have an interview tomorrow for a job so fingers crosses for that . 

As for my health nothing to big just the normal well my new normal  , don't get me wrong I'm greatfull for what I have but my Life now is nothing like it use to be when I first got this heart I can get short of breath very easy and I'm very aware of my heart beating in my chest ,some times I'm fine other times nope not normal , on my 5 Year check up they said it's all ok but my GP still talks to me about fluid been on my lungs last time I has fluid on my lungs I was in HF. Whatever it is or is not wrong with me I don't really know or care I have got to the stage I don't thing I want to know either they give me the pills to take and I take them, I'm still getting frismide pumped though my vains every day and even that I'm not in AF any more I'm still on blood thinners and beta blockers, there's are all drugs that I thought I said goodbye to when having my new heart. I did for a good while say good bye to them intill slowly they started pumping them into my vains again, when I first had that transplant I felt amazing very health, I do feel health now compared to what I use to be4 transplant but I don't feel as health as I did when I got that heart and slowly I start to have one little problem wrong with me at a time , who knows maybe that's part of the "ageing" process with a heart or maybe I didn't look after my self the way I should have, whatever the reason u can't change the past. It makes me think sometimes that a hand full of pills is what keeps me alive it's a weird feeling to thing I'm so reliance on a handful of chemicals.

 Pics from my Aussie trip

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