Blood tracking: I may be OTT, but, I keep records... - MPN Voice

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Blood tracking

shiftzz profile image
12 Replies

I may be OTT, but, I keep records on my results. Anyone else do the same?

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shiftzz profile image
shiftzz
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12 Replies
Rachelthepotter profile image
Rachelthepotter

If only! I’d like to do the same but I have huge difficulty extracting printouts from both the London and the local hospital I go to. And the two hospitals can’r access each others records.

It infuriates me. Such a simple thing.

Do you use a ourpose designed app or a regular spreadsheet? Would welcome details. Then all I have to do is get hold of my own data .. .

fannetastic profile image
fannetastic in reply toRachelthepotter

Have the same problem. I get told to ask my GP for a printout as they don't have printer's now in the consultation rooms. Should not have to do that. I have in the past been given them written on a slip of paper. Great idea Paul of taking a snap of the screen.

francesb profile image
francesb in reply toRachelthepotter

My consultant tells me at least my FBC results each time and any further stats I ask for.

Paul123456 profile image
Paul123456

Shiftzz

I do the same, good way to spot trends. Are you ET and what meds are you on?

Rach

If can’t get print out I take photo of screen or their printout with my phone.

shiftzz profile image
shiftzz in reply toPaul123456

Hi, im PV JAK+ I am happy to send you a copy of a spreadsheet... Its nothing spectacular... My NHS provide us with a book, which they record the results and the number of pills and venesection. Ill post a copy under another thread,,

socrates_8 profile image
socrates_8 in reply toshiftzz

Hey Shiftz... :)

I have been keeping records of all my results since this started circa two (2) years ago...

I just created a simple table in Word, but would love a copy of your 'spreadsheet' etc...

I am not proficient in Excel but am happy to learn etc...

Steve xo

(Sydney)

francesb profile image
francesb

Always! I've got a series of notebooks going right back to first diagnosis. I note blood counts each time and anything relevant said, at each visit to the consultant. It's really useful sometimes to look back, sometimes I've put stats on a spreadsheet graph to particularly track a treatment.

Would never see the consultant without my notebook, am now on number 3!

MariaB27 profile image
MariaB27

Hi I was diagnosed in July and have kept a spreadsheet of my results. Highlighting anything unusual, notes etc. I keep adding columns as I learn more about PV that is relevant and where my results were taken. Always ask for a copy to be sent to myself and my GP. I now have a kidney prob so another column to add. Best Wishes. Ivy

JSKly profile image
JSKly

Yes. For years I kept copies of my results and was able to have them to hand if I traveled. That was NZ. In Scotland if I asked they were given to me. But here I can only have them read. Having them can be very useful.

lizzziep profile image
lizzziep

When I've seen the haem or specialist nurse I get my prescription to take to the hospital pharmacy and attached to that are my complete blood results, I take a photo of this on my phone and then transfer the results to a spreadsheet. I can see then if anything has changed.

Johnsb profile image
Johnsb

I do as well, not as neatly as you do!! But, I may now have to update mine.

Stephen399b profile image
Stephen399b

I have recorded mine since my diagnosis 2 years ago, helps show me and haem the trends. My GP receptionist gives them me with no problem

It is ridiculous that hospital or GP ont give you the results - they are yours and you have a right to have them. Threaten them with the Information Commissioner and look on their website: ico.org.uk/for-the-public/p.... Your doctor will get all the results - they have to have a Data Officer by law. Ask to speak to them and demand your results.

Stephen

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