8 Year heart birthday

On the 14 April 2017 was my 8 year heart birthday it was probable my worst heart birthday i had, I spend most of the day crying but thats another story, but then of course my superstar mum saving the day again and took me out to dinner and turned m day around.

Back in Rotorua

So there I was back again in my home town of Rotorua I loved Tauranga but I will always love Rotorua as they say home is were the heart is. My family was there and a lot of my good friends from growing up. I was happy to be home also as my sister was due to give birth soon and I missed been able to see my niece and nephew as often, as I can't have my own children I live those moments though my niece and nephew.

My health still wasn't amazing when I moved back I was holding a lot of fluid which caused me to vomit if my body holds on to to much fluid and pretty much lived on ice blocks for a while there as fluid started building up in my stomach. The only up side about vomiting and not been able to eat  properly is the losing weight bit. So I had a few hospital stays for a while there while they tried to get on top of my fluid. They spent a lot of time changing my frosemide as they do until they finally decided on a dosage. I take my normal dosage a day but when I start to feel extra fluid on board I will take extra which is pretty easy to tell when I have extra my weigh goes up, I feel bloated and can't eat or when I get it on my lungs I get very short of breath and dizzy. Sometimes I will have bad days other days I will have days that I almost feel normal for a bit and just about forgot I'm sick. My health has gotten better sine I got back from Tauranga it's not amazing but I'm not stuck with my head down the toilet as much anymore. It's just a matter of me keeping on top of my fluid only down side is the more fluid I have the more furosemide I take then it up sets my kidneys it's like a never ending battle my kidneys vs my fluid.
One of my best and longest friends on the left and my friends daughter on the right just a few of the times i had to chill in hospital.

I bit of a simplify vision of while my hearts doing what it's doing. As my hearts not working/ pumping that's what they call heart failure as well anymore it's try's to keep up with the body but can't as well anymore which is what causes the backup of fluid into my lungs ect and as the hearts working so hard trying to keep up with my body that's what causes me heart rate issues ect

Tauranga

What have a been doing between dec 2016 and July 2017 good question

Well I moved to Tauranga for a bit.  I loved it there and was so nice been so close to the beach and I had the best flatmate ever now a life long friend and the worst flatmate ever who we had been friends sine we were like 16 then she stole $2000 dollars from me anyway im not giving her anymore time of day on my blog as she doesn't deserve it I just I one thing to say about that, this while u don't get drugs control your life. I just got a transfer from kidi corp / ABC who I was working for it Rotorua. I was a  reliever in whatever daycare needed me it worked out well I worked when I could, when I couldn't because of my health it didn't matter as I was a reliever I just turned down the shift down and there was no 20 questions about while I was always sick. Sadly my health just started going down hill and it got to the point where I was working less and not getting enough money to pay the rent and I started to realise how hard it was living in a town not knowing many people and having to family when I got sick not having that support like I did in Rotorua. I became really sick one night and no one was home I felt to crappy to even walk back to my bedroom and just collapsed onto the floor and crawled to the bathroom and could stop vomiting lucky I had my phone on me and for whatever reason I called my mum even that she was in Rotorua mum been the superstar she is drove over and took me to the hospital, anyway soon after that I moved back to Rotorua and had to give up my job as I wasn't handling working well with my health, short of breath, vomiting , not been able to eat well, trying to keep on top of the fluid and always tried and all the rest of boring heart failure stuff. When my health getting better and i can work again i would like to move back to Tauranga for now i guess we will just see what the future holds.

My awesome flatmate and friend and her son.

Heart failure

Where do i even start I haven't written for a while I guess you could say a lot had happen between now and then. I am now in heart failure I have been in mild heart failure for a while now but it has now become more then just mild it had now become a daily struggle for me.

Apart from all my other things wrong with me i not going to list them all my main issue now is my left ventricle is not pumping that well any more and my heart has also become very stiff funny how all this rings to much of a bell to me from before transplant.

I have good days and i have bad days it really all depends on how much fluid is backing up into my lungs, my day to day life is very much changed in the recent months, im tried all the time a good day i will get through the day without a sleep. my breathing is pretty crappy on a bad day walking around the house is a small mission, taking a shower is a lot of energy on a good day i want have as much fluid on the lungs so i can go out and do stuff maybe only stopping to catch my breath every few 100 meters or not at all, it really does depend each day can be different. Before my transplant on bad days i wouldn't be able to eat and would vomit a lot if a had to much fluid on board which has started to happen again not as much as before transplant but on bad days i haven't been able to eat and been vomiting a bit.

so there you have it at the moment life is life before transplant again
fluid on lungs
fluid wherever it feels like going
bad breathing
loss of appetite
vomiting
i will have good days and i will have bad this is while they call it the invisible illness as you will see me on days and i will look fine but you probable seeing me on a good day, or a day where i feel crap and im trying my hardest to look fine.

To those of you I haven't had much contact with its not because im of having a great time forgetting about you, its because i have been sick and at the moment i have days where leaving the house is a big effect for me.

Rejection X2 and check up

Haven't written for a while so thought i better do an up date, what happen sine April i had rejection twice and had a check up a week or so ago. Just after my 7 year check up I ended up in Hamilton hospital with rejection not much to that story about a week stay, lots of drugs and all is good again. Ever time i get rejection it damages the heart a bit but still alive and kicking so not going to complain. 

Hospital vista number two i had rejection again this one felt worst i knew something was up i passed out, ambulance was called they come i felt better i decided i was fine and didn't need to go to hospital and went against there medical advice but hey thats me for you. Starting feeling crappy again really dizzy and just really out of it, went up to Hospital and had rejection again. Stayed in for a week this time I felt really sick, pretty much sleep for a week really short of breath and lots of fluid on chest. Give me drugs fixed me as they do and let me go. 

Had to go up to Auckland a few weeks after to see if any damage to heart. Ever time u get rejection it causes a little bit of damage to the heart so there probably was some damage but the doctor was expecting ECGO to be worst then it is that's always good. Heart is quite stiff now just from all the rejection but I'm still alive so can't complain, but means it's not pumping as well as it use to. Funny enough when doctor described it to me they said it similar to HCM ( the old heart condition I had) still have fluid issues but had those so long now it's just about apart of the scenery now. 

Go back to study next week have to do a few more papers to finish my year two as ended up really sick last year and missed so much of my study. I am really worried how well my energy level will handle it as its just not like it use to be but I guess I want know till I try.

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
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