Thursday, December 8, 2016

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
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.

Saturday, August 6, 2016

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.

Saturday, April 23, 2016

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