My cardiologist is retiring

So I went to Hamilton this week the first few days I was there as Dad was getting In ablation done on his heart ( A procedure on his heart to fix his AF) and I was due back up the next day to see my cardiologist. When I was up there with Dad I ran into my cardiologist in the cafe and he did a small consultation there so he said not to bother to come back on Thursday, and as he is retiring he can't follow up my care, so he said it's better for him to just write a letter to my new cardiologist instead. I'm getting transferred back to Rotorua as Rotorua now has A cardiologist, my cardiologist tells me that he trained him and that he is very good but he has a lot to live up to compare to my old cardiologist Who are been under most of my life. I'm not the biggest fan of Rotorua Hospital in general so I am a bit worried about been transferred back to them ( I will see have my transplant team in Auckland though). On top of that my old cardiologist said that Rotorua really needs two cardiologists and that he thinks we may have overloaded him with too much patience, too much patience means he is less time for me less time for me means my health gets put on the back burner.

I Am very sad to see my present cardiologist retire , he's has been my cardiologist for as long as I can remember and gone beyond the call of duty for me. When he told me I needed A heart transplant it was his day off and had another doctor looking after's patience but he came in on his day off to see me because he didn't want just any old doctor telling me that I needed a transplant. He has been like a second father to me, how can you not form a close relationship with someone such as a doctor that is been with you through life and death situations. He's been at my bedside at my sickest and wiped away my tears for me, he's seen me at my healthiest and celebrated life with me. My cardiologist has seen me grow up from the child to a horrible teenager ( I really was a hopeless teenager and the most disobedient patient out)  to where I am today.

411 on me 

Still in AF

Still have issues with fluid around the lungs

Still have shortness of breath & Dissness 

I can add leaky value to the list now 

Low Kidney function ( to much meds) 

Still anaemia (but they are going to have me some iron through IV)  

Doctors are working on the AF thing but have been for million years so I won't hold my breath, that hopefully should help get ride of the dizziness and shortness of breath. 

Leaky heart valve & Auckland

Years ago when I was a child standing in a huge hospital agreeing to make that "lolly" that will keep my heart health, who knew that day till the rest of my life I would be taking more and more medication just to keep me alive .

So I went to Auckland a few weeks back for my 6 year check up everything was good well good for me, I'm was back in AF but I already knew that I can feel when I go in and out of AF. So they changed my meds around again to try and get me out of AF but I don't have to much hope in that as there been trying to get me in out for a while now, and all that happens is another drug crossed of the list that doesn't work but who knows maybe they will find one . 

So I went to see a lung doctor today they Clyde wanted me to see so I was like  sure, went to see this doctor she was very nice really good but I think I might have been a bit more of a weird case then what she's use to cos she keeped saying what does a simple lung doctor know!! lots I should hope if u want to be my doctor. 

Anyway in Conversation she talked about my leafy heart valve and I was like hold on I didn't know I had a leaky heart valve so I told her a wasent happy no one told me , went on with this info about leafy heart valve with nothing else to go on . So I emailed Auckland to let them know I was disappointed that them or Hamilton didn't tell me about it . My Auckland doctor rang up soon after I emailed her about it and gave me a little 411 on it.

Telling me was over looked as it a normal thing for heart transplant patients, I still feel I should have been told but I did feel better about the whole thing after my doctor rang me . 

Anyway I'm due in Hamilton in a few weeks so I'll get they do give me a little more info about this vavle .

Hospital and kidneys

So after been on frusemide for a week and had dropped 5kg of fluid and still had a cough and just feeling pretty crappy I went up to the hospital, they did they test ect as they do and turns out because of the frusmide I'm taking my kindey fuction droped really low. So they took me off frusemide and a few other pills so try and get my kidneys back to normal. They did a few test and decide the cough wasent caused by fluid and they didn't know what was causing cough but discharged me a few days later as I was due to go to Auckland for a check up . 

So went to Auckland and asked them about my cough they said it was hard to pin point it to something but if it starts getting worst let them know and they will put me back on frusemide. 

So went home a week or so later I went to Hamilton for a check up there an my kidneys wear back to normal by then and when I went to see my Hamilton doctor I was back in AF so he's going to play with my drugs and see if he can get me out of AF. He also put me back on frusemide as kidneys wear better and I had fluid, breathing is so much better been back on it even that I hate the drug just have to get someone to get me out of AF and get rid of my fluid and all will be great again, and Hamilton didn't know what my cough was either he made a few suggest like something to do with the way the hearts pumping.

In the mean time after all my appointments I was coughing so much I put my back out man was that painfull, I think it's come right now still A little tender but way better. I still have this mystery cough that no one can tell me what it is , iv had it for a good month now getting a bit annoying with it 

Fluid!!!

So I started to get this really bad chesty cough which I put down to a chest infection so I went to the doctor about it and she did that blood test that tell you how much fluid on board you have ,BNP I think it's called and it come back that I had fluid on my lungs so it wasent a chest infection it was fluid on the lungs. So I'm not sure which is better,  anyway my last checkup in Auckland they said I can cum off my furisemide which Is what I did and this is where the fluid on the lungs has come from . So I'm not just back on furisemide I have to take more then normal to try and get rid of it ,I'm up in Auckland next week anyway so if the fluid is still there I can get them to do something about it .

Kind of annoyed that they told me at I could come of and becourse of that I now have fluid on my lungs not annoyed at them just annoyed . So I'm now stuck with this crazzy cough and not been able to lie down at night without having a coughing fit and trouble breathing. Owell hopefully it doesent take to long for the fluid to go away . 

Auckland

So my Auckland trip a few weeks ago went well, they said I wasent in heart failure and said I can even come of my furosemide. They were going to bring me back up in a few weeks to do a few tests to see what was courseing the shortness of breath they were thinking AF , and I also got some iron through IV as I was really low in iron which wasent helping my shortness of breath. 

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.