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Saturday, June 17, 2006


To view the full story so far please click here.

Hi, it's Sharon again,

When I first started dating Paul I had a few questions about his heart. They weren't all at once, but every so often I would think about something that I didn't understand, or sometimes it was just idle curiosity. What was the most shocking thing to me however was how little information Paul could give me.

Pauls lack of information was not due to forgetfulness but merely because he had never bothered to ask the questions himself. That was the way things were, he new how to look after himself and he knew that he had had two major operations but apart from that he new very few details and most of these were a blur.

Together we have through speaking to his parents and his cardeologist pieced together what actually happened, although I feel that for Paul this information has little more meaning that when a distant relative who hasn't seen you in years expects you to remember the time you were sick on their sofa at the age of 4 (or similar, you know what I mean, and it was probably your cousin anyway!).

So although Paul has gained an interest and curiosity about his heart, it is still a bit of a mystery to him. I often think that sometimes I can recall more of the details than he can. I don't really have much of a point to this story, I guess if Paul had of continued to have invasive treatment throughout his teens and into adult hood things may have been different, I guess my point is that ignorance can be bliss.

3 Comments:

At 8:43 am, Anonymous Anonymous said...

Just recently I paid for a copy of my health records. There is a law that allows you to have access to this information, although there was a £50 maximum fee for it. The cost of my notes 340 pages was £112, so as it was capped at £50 I gave the rest of the money to the children's appeal fund at the hospital.
As I am now 40 years old, the earlier notes made very interesting reading. I discovered much more than I knew before about the operations I had when I was younger. I discovered for example that when they repaired the VSD with a dacron patch when I was 7 years old that they also put a 3cm gusset in the pulmonary artery. I had a further operation in 1999 on my pulmonary artery and this was never mentioned then, so it was interesting to me.

 
At 3:18 pm, Blogger The Special Zipper said...

Angela raises an interesting point.

Our son has surgery in Melbourne Australia, but we live and have most exposure to specialists in Adelaide South Australia. So we have two sets of medical files.

We had once been advised to get copies of all notes to ensure if we ever wanted second opions or had to go to another hospital, that they could see what had been done and not repeat test unnecessarily for example.

It gets interesting however when CJ is up to 49 chest x ray in Adelaide and I think up to file part 5 which usually consist of around 100 - 200 folios .. that is a stack of information to get hold of. We have what is called the Freedom of Information Act which is similar to what Angela has explained. There is certain fees but they can be capped under certain circumstances.

Staying up late for Australia vs Brazil tonight .. I think the outcome is fairly obvious but you can't but be excited to see your country play the best in the world ..even as a non soccor fan.

It starts at 1:30 am so it looks like a measily 3-4 hours sleep tonight.

www.beatinghears4kids.blogspot.com

 
At 9:21 am, Blogger Lilian said...

Hi Sharon and Paul,

I really identify with what you said in this entry. I feel that I don't know a lot about what happened to me as a child - I can't remember much at all, and I think I might have subconsiously repressed memories because obviously it wasn't very nice! When people ask me about it though I would like to be able to give them more info, and feel a bit silly when I can't!

I also got my GP medical records, which were interesting but I would like to go into all the stuff my cardiologist has - two very fat files!

Anyway, keep up the good work.

Lilian

 

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