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 .

Why me...

I have no ask that question some time or another why me !!
Why was i chossen to live the life of a sick person , why did i have to spent my whole life in and out of hospital and on many many different drugs.
Why was i sick in bed while all my friends where at sports days , why was my childhood stolen from me, why did a spend 21 years of my life sick .
Why will i forever be tried down to a hospital and the mebical world , my life time of sickness has scared me for life and because of it iv missed out on a lot and its taking me so much longer to catch up with everyone else...

I often think about my life if i had never been sick what would it be like , what would i be doing now maybe i would have more enegry to try at school and maybe i would have gone of to uni and have a great job and just be living my life normal like everyone else,
On the other hand if i wasent sick i would look at life just like everyone else just life , i wouldent see the amazing-ness it is that i see now , i wouldent get kicks out of life like a do now i would never know how great it is to be able to get out of bed everyday and not have to fight for life.