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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." Posted by Margi.Joan at 4:10 AM No comments: Labels: drugs, hcm, heart condition, heart transplant, hypertrophic cardiomyopathy, new Zealand, organ doner new zealand, young sick


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. Posted by Margi.Joan at 9:32 PM No comments: how long iv had my new heart