I’ve tossed around in my head what to do with Trenna’s extensive medical records.<\/p>\n\n\n\n
They mainly comprise the detailed notes she would make at the end of almost all consultations with medical professionals. At first she hand wrote them on A5 pieces of paper (actually hand written on the back of bits of paper that otherwise would have ended in the recycling bin). <\/p>\n\n\n\n
Later she recorded them on her iPad. Either typed by her, or by talking to the iPad and it converting it to text. Unfortunately her poor eyesight did allow a number of transcription errors to appear without her being able to spot them.<\/p>\n\n\n\n
But there are also various reports from specialist doctors, radiographers, pathologists and others. In some cases I have hospital records and discharge letters.<\/p>\n\n\n\n
All in all a tonne of material.<\/p>\n\n\n\n
The things I’m concerned about are privacy and people misinterpreting or inadvertently misusing the information.<\/p>\n\n\n\n
My mind is pretty easy on the privacy issue. I know that Trenna wanted her story told, and her health and interactions with the medical profession were a huge, but not defining, part of her life.<\/p>\n\n\n\n
So the other issue is this. I don’t want lay-people looking at Trenna’s historical records and thinking they can be applied to their own situation. For a start, medical science has moved on from when Trenna was getting advice. More importantly, advice given to Trenna was specifically about Trenna’s INDIVIDUAL circumstances. Noone has those exact same set of circumstances.<\/p>\n\n\n\n
So, I think what I’ll do is to put up Trenna’s various health records with a cautionary note at the start of each post.<\/p>\n\n\n\n
The posts will come out over an extended period as I will need to read each one first. If Trenna or a doctor are talking about something particularly intimate or sensitive I may of course not post that particular record, or I might slightly censor it.<\/p>\n\n\n\n
As I have said elsewhere Trenna was always prepared to talk about her medical conditions, and was especially keen to help doctors and other professionals to understand more about Marfan Syndrome.<\/p>\n\n\n\n
Hopefully these will get the word out about how wide ranging the effects are and some of the (im)practical implications.<\/p>\n\n\n\n
I think it will be interesting for people to see just how detailed Trenna’s records were. At a consultation it was not uncommon for Trenna to refer to her records to verify a piece of information or to make a particular point to a doctor.<\/p>\n\n\n\n
I think also it will be useful for people who have similar conditions or symptoms to look at what she tried before discussing any possibilities with an appropriate professional (remembering of course that medicine may have moved on). Or just to reassure themselves that many others have similar issues.<\/p>\n\n\n\n
I think these records also add yet further insights to Trenna’s character and the methodical way she attacked tasks.<\/p>\n\n\n\n
I think it becomes obvious that Trenna had a good deal of respect for the knowledge, experience and training of doctors, but she in no way felt that she had to blindly take their advice. And that’s the way it should be.<\/p>\n\n\n\n
Like in all aspects of her life, she was thoughtful and carefully considered her interactions with the health community,<\/p>\n\n\n\n
So I’ll start putting up records as soon as I find the time. I shall try to do them fairly chronologically, at least within each health discipline, but will probably leave the hand written, older records until later.<\/p>\n\n\n\n
Here is, or at least my first draft of, the disclaimer I will put at the front of each post. Maybe it isn’t necessary – because it is obvious – but I’m going to do it anyway.<\/p>\n\n\n\n
“PLEASE READ THIS FIRST – THIS POST ISN’T MEDICAL ADVICE<\/p>\n\n\n\n
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.<\/p>\n\n\n\n
Greg Mahney”<\/p>\n\n\n\n
I really DO hope you find the records interesting.<\/p>\n","protected":false},"excerpt":{"rendered":"
Introduction by Greg, all the records are Trenna’s work unless specified I’ve tossed around in my head what to do with Trenna’s extensive medical records. They mainly comprise the detailed notes she would make at the end of almost all consultations with medical professionals. At first she hand wrote them on A5 pieces of paper […]<\/p>\n","protected":false},"author":1,"featured_media":1855,"comment_status":"open","ping_status":"open","sticky":false,"template":"templates\/template-full-width.php","format":"standard","meta":{"nf_dc_page":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[79,80,24,504,246,81],"tags":[247],"post_folder":[248],"class_list":["post-1816","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-coping","category-heart-lung-failure","category-marfan","category-medical","category-records","category-visually-impaired","tag-medical-records"],"yoast_head":"\n