Update after guys app

[Dottiedot]

Hi everyone sending best wishes to you all hunter5582 I had my app with a lovely consultant at guys, my next app will be face to face with additional blood tests will be having the jak 2 test again , blood film morphology , lactate dehydrogenase and iron profile. However I had the following happen on my blood test at the beginning of November my hct was 41 I had another blood test on the 29th and it had increased to 48 never known it to jump that much in a short period so I had to have a venesection

[hunter5582]

Glad to hear that you had an appointment at Guys and that it went well.

Going from 41% to 48% in just a month does seem quite unusual. In the absence of a known trigger (e.g., hypoxia from time at high elevations), I am not sure why that would happen. I would be suspicious of a lab error. While rare, they do happen. Did you ask the MPN care team ay Guys about an explanation for the sudden increase?

Please do let is know what you find out.

[Dottiedot in reply to hunter5582]

Hi hunter this was at my local hospital I have to have blood tests every 3 weeks and it coincided just after my guys app I must admit I thought I misheard them I have more blood tests next week see what they show up they actually don't tell me unless I ask...

[hunter5582 in reply to Dottiedot]

It is unfortunate that you have to ask. I am always given a copy of the CBC before I leave the hematology office. It posts automatically to my patient portal at other other practices where I do not get a copy.

Hope you get good news on your next CBC.

[RazB in reply to Dottiedot]

Speak to your GP/Guys about getting your blood tests/appointment follow up ltrs etc sent to you via computer. It’s very easy but they need to send you a link.

[hunter5582]

Sorry to hear about the quality of service issues. I know others have chosen to change their base hospital. I have done something similar in changing providers when I did not find the care I received to be acceptable.

Wishing you success moving forward.

[Dottiedot in reply to hunter5582]

I'm sure I'm not the only one my haematologist there only cares about her private health care patients tbh all she does is shout at me down the phone not had a single f2f appointment in 3 years such a different experience at guys

[hunter5582 in reply to Dottiedot]

YIKES!! I would definitely change providers. And file a complaint. ASAP.

[MaggieSylvie in reply to Dottiedot]

I have a f2f next week and its the first since well before covid. I am taking my partner for his appointment after that. Should I take him to my appointment? He hasn't been to any and I don't know why I've suddenly got a f2f.

[Dottiedot in reply to MaggieSylvie]

My husband always comes with me to guys as he always seems to have questions too which they very generously answer it's good to have someone with you

[MaggieSylvie in reply to Dottiedot]

Thanks; I'm only on watch and wait and aspirin and he has his own problems. No support at all.

[Dottiedot in reply to MaggieSylvie]

Thats such a shame 😔

[Ebot]

Glad you had a positive first experience and it sounds as if you have a thorough follow up appointment booked in. Keep us posted.

[Dottiedot in reply to Ebot]

Hi Ebot I've been under guys since July 2022abd have been lucky enough to have face to face appointments with professor Harrison guys are brilliant