Vasculitis UK
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Summarizing Medical Issues

Good day vasci friends.

For months now, I've been putting off a chore: namely, summarizing my medical conditions, treatments and ongoing issues into a succinct report I can use myself or give to my physicians.

Since my July 2013 MPA kidney diagnosis, I've been referred around the Chicagoland area visiting all sorts of specialists and undergoing all sorts of tests and treatments. As if the disease itself doesn't cause me to collapse from fatigue, managing vasculitis, its treatment and subsequent diagnosis (plural) is exhausting!

Does anyone have a summary they could share? Thus far, my handwritten notes are in chronological order of medical incident/diagnosis/treatment, as it occurs. It's a bit muddled -- like this disease! My background is in computer programming and I'm considering creating a flowchart. (That seems entirely too geeky, even by my own standards.)

As always,I greatly appreciate your input!

Be healthy, vasci peeps.


2 Replies

Hello there, there is certainly a lot of information to format into some kind of order. I keep a spreadsheet of all the all appointments my husband has had since his illness began which now amounts to about 14 pages of Excel. I also keep a list of his current medications but also when they change. I keep a diary of the appointments we have to go to and a daily list of the pred he takes as it changes, sometimes monthly, sometimes daily. Oh, and there's also a page that lists how he feels when it's different to normal, all with dates of course and blood results. My goodness, he's lucky to have me!! Good luck with it, may seem a lot but you will always need the info.


I have often felt that it would be useful to have a more organised way of holding all the information needed. I use a mixture of spreadsheets and iPad notes, but I know this could be so much better if I put the effort in. Some kind of app to record everything needed (symptoms, medications, appointments, etc) for Vasculitis would be really useful but alas I don't have those skills. I currently use a list of categories to keep track of my condition and monitor any changes over time and medication changes:


Kidney involvement:


Painful joints and muscles:





Nerve involvement:







Night sweats:


Weight Loss:


Anyway, perhaps someday some IT wiz kid might develop a Vasculitus App that would be of benefit - I for one would be happy to pay a (modest) annual payment to use such an App.


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