7 year heart birthday

Thought it was time I did an update. Had my 7 year check up a few weeks ago, it went great the best I have had for a while everything is looking great I am still in AF and get a few fluid issues but it's a small price to pay to live a normal life . I have also now lost 20kg still want to lose another 20 but getting there slowly.

For my 7 year heart birthday I let of 7 red balloons 1 balloons for every year with my new heart at lake Tarawera and sprinkled my ashes of my old heart at lake Tarawera as my old heart was cremated with nana when she passes away a few months back that's is my fav lake seen I was a young child spend a lot of time on it in the boat or just watching it from the sore.

My 7 heart birthday 

My hearts ashes and the box Harry you coloured in for me to go in with nana toget cremated

 

 My before and after photo 20kg later 

Auckland

So just thought I'll do a small update as I'm tried and need to get up in morning but was in Auckland the other day, ever thing is look good better then it has in a long time . I'm back in a normal heart rythem, kidneys are back to normal even my iron is back to normal, u be surprised what bad iron can do to you short of breath, dizziness, weak and tried all the time. I still have a bit of heart failure with fluid issues but I just feel so much better then I have.

Anyway there my Quick update, went to the hobbit set today and walked round the whole set and have to stop once to catch my breath.

Health is getting better

We'll I thought it's about time I did an update as I haven't posted in a while. We'll at the moment things are going great for me health wise considering all the trouble I have had in the last few months, maybe I'll change that word to better, great for me not normal to the rest of the world but what is normal anyway. 

After the last year or so I been in AF and trying just about ever drug all of a sudden my heart just pops back into a normal rythem, God knows how or why! it just haven't been out of rythem its been tachycardia and then boom back to normal so I'm really happy about that. I can deal with AF it's not the end of the world but it does effect my breathing and make me feel tried all the time so I would rather be in a normal rythem. They had started me on Amiondarone but I had been on it for like 3 months and nothing so thats probably what's made it go back to a normal rythem but took long enough. 

My kidneys are also back to normal again yay, they been playing up for the last few month because of my furosemide ect pretty happy that's back to normal, after lots of playing around with my furosemide. I always have this issue I take to much furosemide and kidney function drops, then they drop the furosemide and I can't breath very well so fingers crossed my kidneys stay normal this time. 

My iron is also back to normal I hav not had normal iron in years and this just seems like a little thing but my iron was really low was in the 80's and I was getting iron transfusions, when I was low I was getting really dizzy, it was making my already bad breath worst and I was just feeling so tried all the time, it was horrible I was starting to think I was getting sick again when it was really just really low iron. 

I have had a lot of up and downs in the last few months health wise but I'm not going to talk about the negative stuff sins it's not an issue anymore while hold onto it, my mental health had been getting me down a lot lately but hey with all my health stuff I have gone through the and am going through the I'm allowed to have a my life suxs moment and I hate been sick moment or even week or month, there a few other stuff that's I have had going on to but I want go into detail as I really don't know if people do or don't read this but it makes me feel better to write it down so while the hell not. 

Painkillers

They fight everyday to keep me alive 

They saved my life 

Taught me what's right or wrong for my body

Taught me from a child

Without even meaning to

Without even knowing it

That a pill will fix it

That medication is the answer to all problems

Weather it is physical or mental 

That pills equal problem gone. 

When my body breaks I am given a pill 

Pill keep me alive everyday

Now hear I am addicted

Not understanding or seeing the problem

Popping pills like candy 

That's all I have known 

But that's ok pills fix problems right? 

The pills were then taken, 

Ripped away from me

Going against everything I know

The only thing I have ever known 

Everything I have ever been taught 

Pills fix all of my problems 

So here I am trapped

Withdrawers causing physical and emotional pain

My protection is gone

My body's safe zone has been taken away

My wall is breaking down

 

Self-destruction

Am I self-destructing or just living my life. 

Am I being ill-responsible or just enjoying being free. 

Can't you see me, can't you see me 

Am I not following your book of rules 

Am I making foolish decisions. 

Can't you see me, can't you see me

Look at me , look at me 

Stop looking at me as your investment your toy

Your precious cargo, your challenge

You fight everyday to keep me alive 

You tell me what's right and wrong

You control my body, my heart 

You robbed my independence

You saved my life 

You saved your investment

Am I self-destructing or just living my life

Am I been ill responsible or just enjoying been free

Can't you see I just want to be free 

Let me be 

 

Been sick suxs

Off late my health is really starting to effect my day to day life , I feel like I'm sick again it's horrible.

Fluid, AF, shortness of breath , dizziness, triedness  the list goes on, I have decided to drop one of my papers, I'm still doing 3 just dropped the 4th one . One of my hardest things at the moment I have been struggling with is been tried all the time. I hate it all I want to do is sleep but then I have all this study I'm meant to be doing . On top of that the way my health is at the moment I do wonder what's the point of my study if I can't pick up a baby or run around kids if I'm going to get short of breath and dizzy or the time, it really made question what the point of my study if I'm going to be to sick to use my skills. It's really hard to see a future for yourself when ur feeling as crappy all the time.

It's been really getting me down been sick all the time been tried is hard but not having another breath to do anything or go anywhere is just as bad and don't even get me started on the dizziness. It's not fair I already spend half my life been sick and then I was given this new heart and it was amazing, then all of a sudden life decided to take it away from me again.

Someone asked me the other day if my health will keep deteriorating or will they be able to fix it and I answered them, well I thought I did and then I thought about it u know what I don't even know can they fix me or will I just keep getting worst. So next time I go to the doctor I'm going to ask them just that will I get worst and keep getting sicker or can they fix me , how is it that IV never asked this question and when I sit down and think about it I don't even know the answer. Do I want to know the question ? I don't know !

Auckland. Back again in three months

So I got back from Auckland a few days ago, it went well I guess im on 3 monthly check up though boo !!!. The last month or so my health has not been good at all I feel like it is gone down dramatically,  my AF has not been good been getting dizzy really bad and my breathing has been shit then there all the fluid thats backing up into my lungs which my furosemide has been up. Caused by a lot of reasons is that I'm very low in iron which is causing a lot of the dizziness and shortness of breath another reason being AF which they can't seem to get under control. They have tried lots of medication but none of that seems to be working. They have put me on Amiodarone this drug has alot of side effects and in the past my doctor has never wanted to put me on it been so young but i have been on it a few times and if you look at the transplant drugs i take it cant be that bad. Auckland are talking about doing an ablation on me
 I personally have never had one on me before but I know my father has had a few and ablation is were pretty common used on HCM (the heart condition I had), so I know all about them as. They put a tube in your heart  and burn a few bits away from the heart, it sounds worse than it really is, and it is meant to help get rid of the AF.

I can really feel my health been Affected physically which is really starting to get me down, the small things we all take for granted are now becoming an effort. Things at walking to my car even walking to the other end of the house on a bad day, putting my washing I am getting shorter breath is kind of ridiculous to be honest, it's really making me feel like history is repeating itself it sounds all too familiar.

I really do hope that this is just a phase and that this ablation and once get my iron back to normal will fix me, but I have no idea what my future holds at the moment I just feel the last six months I have become sicker and sicker until I have got to where I am now. And dont even get me started on the fluid around my lungs.

IRON !! I NEED IRON

So like normal my iron is really low but of late it's been making me feel really really like really bad I can't seem to function well without it, iron is what carries the oxygen around the body so for some with a heart like sine it's really important , it's been making me feel short of breath, dizzy, tried, drained everything in between, my doctor has me on a waiting list to get some iron through the IV as I can't take the pills but like everything else in life I have to wait for it .

It's funny how close low iron symptoms and heart rated ones are very closely related so it's hard to know it it is iron or heart but he wants to get on top of the iron first and once we are done that then he can tell what's iron related and what's heart issues, I have made an appointment with my doctor for tomorrow though to see if there anything she can do in between because it's really getting me down I can't function like this and on top of that I'm meant to be on practicum so it makes it worst that I can't be on my best performance why does my health always get in the way of my life arr 

Tried of fighting my own body

TThe I'm so over it, it been my bad health. My health has just gone down hill a lot latly. In the last year and has gone downhill a lot but in the last month or so I feel like it's gone downhill even more dramatically. Shortness of breath, dizziness, tired, fast heart rates, AF, too much fluid you name it i've been having the issue.

I feel like I'm at the point where I'm not sick enough not to work but im sick enough that when I do work it's hard really hard, trying to function through a normal day take so much more effort in people around me even realise, and on top of that trying to hide it from the outside world as I don't want to look like that person, a person who can walk to the car without running out of with all that person who can't walk up a flight of stairs without getting dizzy, it's really hard and it's so frustrating.  

My day starts off I walk to my car I get my car I have to sit there and catch my breath, I open the gate go back to my car and then catch my breath again I drive out the gate back to my car to catch my breath again I drive to work I get out of my car I walk to the meal room where I have to catch my breath again I then walk to my work place and again I catch my breath agai. This continues throughout the day three meal breaks means three times walking to the meal room to catch my breath it mean three times walking back from the meal room again and catching my breath again. Catching my breath throughout the day and at the end of the day walking to my car and catching my breath again. Every time I have to stop to get my breath it's not very long 30 seconds to a minute but it's just so hard that I can't just can't do everything like a normal person without having to stop and catch my breath of the time,  if I'm not catching my breath I'm stopping because im dizzy and don't want to pass out. 

Of late i've been wondering if my study is a waste of time by the time I finish my degree I say my healthy not gonna be any better if anything worse and I worry by then will I be too sick to even use my degree, I'm on my practicum at the moment and I'm really struggling caring the babies it's putting a lot of strain on me and I sometimes think if I can't do that what is the point of my study. Just working five days a week has been really hard on me,  my body is ready to just give up. 

heart rate needs controll

The last month or so iv been in hospital about 3 times or for the same reason my heart rate just sky rockets up its already in AF so they try control it with meds works for a little while then boom just jumps up and i'm sick of it, this new pill they tried me on works for a little while and it only works as a temp fix it cant control my heart rate for long times only for a little while till boom it fails again, and also think I might have been lost in the system when Hamilton transferred me back to Rotorua as my doctor has retried so I think I need to make a few phone calls and make sure I haven't, I need to see a doctor so they can change this dam pill

on another note im on my practicum at the moment and first week  went well, next week I come down with the flu, then week after that I end up with an infected leg really makes me wonder at time if working with children was the right choose to make. Ever time I go on practicum I get sick and I knew when I signed up that I do have a low immune system and that it something im always going to have to be carefully of for the rest of my life but at the same time I  don't want to live my life around my health I want my health to work around me, I want to do what I want do with my life because its what I want to do not because some doctor told me it was a bad idea.


the hospital made me arm swell up, long story ill tell it another time
>>>>>>>>>>>>>>>

Over it !!!

I'm so over it, over all this got dam health stuff!!! If you one of these people who want to tell me how grateful I should be bla bla just leave now now cos of course I am grateful but I shouldn't have to explain to someone that I'm greatful if u know me well enough you know I am with my heart and soul but god dam it after all that I have been thought I am allowed I rant .

I am sick of getting short of breath,I want to be able to keep up with my friends and not having to turn down things because I know I want keep up and I don't want them to have to wait for me all the time, thing I want to do but I can't cos my long , breathing can't take it, I just want to be free from it. I'm sick of my chest been full of fluid , I want a clear cheats, I dream of the day I don't have a couch. I want to be able to walk up some god dam stairs without feeling like I'm gonna do pass out I'm sick of been dizzy, walking down the street and you have to quickly grad on to something so you want fall over and in the way that the world can't tell either , in the supermarket trying to hide the fact that your body is using all the stretch it has to just stay standing. You whole life because a Challenge. 

I want those first great years I had after transplant not this bullshit, I want to go out and live my life with not having there's issues in the way , so shortness of breath, dizziness , fluid in the chest are only small issues but they effect my life in do many ways that it's hard to even explain 

Too many test

At the moment I have been over loaded with hospital apointments with heaps of pointless tests there doing on me, I use the word pointless as when I saw the doctor she said we don't think it's this or that but we want to do a test just in case. I'm hopping my apointments will come to an end soon  it's effecting my attendance for course and if I don't get enough attendance I can't go on my practicum.

Last week I was in Hamilton hospital for the week and I was also there a few months before, IV just spend a week in Auckland hospital was up at Aucklans a few months early and am due back up there in a few months .A week or so ago I had an apointments at Rotorua hospital I had two apointments there yesterday and one today and one again on Monday , the cardiologist up there in a few months as well as one of the Doctors followed , at least Rotorua apointments I don't have to take a whole day of ur they take up time as a lot of the time u end up waiting in waiting room far to long . Anyway or my apointments are building up , I know I have to put my health first but it does get frustrating at times.


just throught I would add this as its so very true quote from my sister keeper:

"Having a child who is sick is a full-time occupation. Sure, we still enjoy the usual day-to-day happinesses of family life. But beneath the exterior, there are cracks, resentments, alliances that threaten the very foundation of our lives, as at any moment our whole world could come tumbling down."

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