Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for March 2020

Just had a call

Hello all, Just received a call from my consultant at Guys re my next appt being cancelled. Also discussed the current guidelines with regard to isolation. He...

Hello all, Just received a call from my consultant at Guys re my next appt bein...

stevenjust

•4 years ago

5 Replies

Letter

I have just received my NHS letter this morning.

wendycu

•4 years ago

4 Replies

James Cook Hospital Haematology Patients

For those of you attending James Cook Hospital Haematology Department for you treatment, and are wondering about your Vulnerable Person letter/text. I phoned...

For those of you attending James Cook Hospital Haematology Department for you tr...

jillydabrat

•4 years ago

4 Replies

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Short Video From MPN Research At Texas University

Hi everyone, There are some written questions and answers plus a short video for MPN patients regarding Coronovirus from the USA's top research clinic for...

Hi everyone, There are some written questions and answers plus a short video for...

Purr-cat

•4 years ago

8 Replies

PFO, To close or not to close?

PV JAK2+, I’ve had an MI (4 years ago) and TIA (3 months ago) Docs thought the TIA was caused by a clot traveling through a PFO to my brain. Had two TEE (very...

PV JAK2+, I’ve had an MI (4 years ago) and TIA (3 months ago) Docs thought the T...

JT_Marlin

•4 years ago

5 Replies

ET Hydroxurea and Covid 19

Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so scary but I also wonder if taking low dose Hydroxurea (I take 2 per day, so1000mg)...

Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so sca...

Elzbietta

•4 years ago

11 Replies

Mpn advice

Hi all. I'm new to the forum and just wanted to know if i should get a text or letter regarding coronavirus isolation. I have prv jak 2 and portal vein...

Hi all. I'm new to the forum and just wanted to know if i should get a text or l...

poly2

•4 years ago

14 Replies

VIROLOGIST AT MURDOCH UNIVERSITY ON COVID–19

Post by MPN-MATE Admin » Thu Mar 26, 2020 9:38 pm Evening all... :D Found this an interesting perspective from a virologist who seems to know a little about...

Post by MPN-MATE Admin » Thu Mar 26, 2020 9:38 pm Evening all... :D Found thi...

socrates_8

•4 years ago

19 Replies

DO MPNs RUN IN FAMILIES?

Post by MPN-MATE Admin » Thu Mar 26, 2020 9:05 am Guys... Morning to all of you wherever you might be... This is a subject hat has always grabbed my attention...

Post by MPN-MATE Admin » Thu Mar 26, 2020 9:05 am Guys... Morning to all of you...

socrates_8

•4 years ago

37 Replies

Has anybody had a txt or message from the NHS yet?

I know there was the general info message sent out by the NHS but I am talking about the letter or text regarding people at high risk?

I know there was the general info message sent out by the NHS but I am talking a...

jillydabrat

•4 years ago

59 Replies

One way of volunteering while you are in self isolation

Hi guys and gals I know I cannot be one of the 405,000 people who volunteer to help the NHS but I have figured out something that can help give something...

Hi guys and gals I know I cannot be one of the 405,000 people who volunteer to ...

jillydabrat

•4 years ago

4 Replies

Spring is here

Just been out for my daily exercise and the birds are tweeting and pairing up, the deer were out too and the buzzard was sitting on his high perch looking for...

Just been out for my daily exercise and the birds are tweeting and pairing up, t...

Aime

•4 years ago

12 Replies

Haematologist's comments from today

I just thought I would share what my consultant said in my telephone consultation today. I read out to him the third section of our advice from MPN Voice (the...

I just thought I would share what my consultant said in my telephone consultatio...

Otterfield

•4 years ago

11 Replies

Still none the wiser

Hello all, I emailed my nurse at Guys today to try get some clarification on the vulnerable letters and wether we will get them or not. I’m still unclear so am...

Hello all, I emailed my nurse at Guys today to try get some clarification on the...

stevenjust

•4 years ago

Be the first to reply

Nhs letter

Good morning bit confused I'm et jak2 +and on hydroxycarbamide haven't heard from nhs or doctor does this mean I'm not high risk I'm 69 ??

Good morning bit confused I'm et jak2 +and on hydroxycarbamide haven't heard fro...

Chel1

•4 years ago

6 Replies

Routine bloodwork and Phlebotomy

My doctor has created a standing order for me to continue to get bloodwork every 4 weeks as my Pegasys dose increases. And he says if the hematocrit is still...

My doctor has created a standing order for me to continue to get bloodwork every...

JT_Marlin

•4 years ago

Be the first to reply

The unknown

Hi all These times are very worrying and confusing for us all I am seeing all the chats and coming up with the conclusion that us with a MPN are none the...

Hi all These times are very worrying and confusing for us all I am seeing all t...

Gunner73

•4 years ago

1 Reply

Text or no text?

So far I haven't had a text about isolating, but I am doing so anyway. I spoke to my specialist nurse about 10 days ago, she told me I wasn't extremely high...

So far I haven't had a text about isolating, but I am doing so anyway. I spoke t...

lizzziep

•4 years ago

8 Replies

Shielding text/letter

Hi. I have never written on here before! So hello fellow MPN people. I received a text message on Monday to tell me I am at risk and need to stay at home for...

Hi. I have never written on here before! So hello fellow MPN people. I received ...

Kaye2808

•4 years ago

3 Replies

Awaiting Diagnosis

Hey guys, I’ve been lurking on this forum for I think almost a month now. I’m 27 years old, female. I went to the doctor in February for a routine blood test...

Hey guys, I’ve been lurking on this forum for I think almost a month now. I’m 2...

Beerye1

•4 years ago

9 Replies

CESSATION OF ALL MPN-MATE RESEARCH FOUNDATION FUNDRAISER EVENTS

Post by MPN-MATE Admin » Wed Mar 25, 2020 11:48 am CESSATION OF ALL MPN-MATE RESEARCH FOUNDATION FUNDRAISER EVENTS Morning everyone... :D Just a quick...

Post by MPN-MATE Admin » Wed Mar 25, 2020 11:48 am CESSATION OF ALL MPN-MATE RE...

socrates_8

•4 years ago

11 Replies

Uncertainty over MPNs re Coronavirus

Hi folks, I suspect that I am not the only one to be uncertain about where MPN sufferers stand regarding coronavirus - are we at increased risk or not? I...

Hi folks, I suspect that I am not the only one to be uncertain about where MPN s...

Ovingite

•4 years ago

27 Replies

12 Week isolation with PV or not?

I've seen that others are receiving texts or letters telling them that they are at high risk and to self isolate for 12 weeks. I saw on the TV this morning...

I've seen that others are receiving texts or letters telling them that they are ...

Transporter

•4 years ago

10 Replies

Tele-video Appointment

Just had my first Tele-Video appointment with my hematologist. It went quite well and was certainly much better than a phone call. The doc used the VSee app...

Just had my first Tele-Video appointment with my hematologist. It went quite we...

hunter5582

•4 years ago

8 Replies

Enquiry

Just seen on the news people with blood cancer have to say at home. And in the next couple of days will get letter. Does this include us?

Just seen on the news people with blood cancer have to say at home. And in the n...

Avamia94

•4 years ago

8 Replies

Blood test

Hi everyone hope you all keeping well in theses unreal times a quick question has anyone not gone for there blood test due to this virus now all blood test...

Hi everyone hope you all keeping well in theses unreal times a quick question ha...

Poppy6060

•4 years ago

15 Replies

Thanks Boris for giving us a chance as long as it is not just words. You must enforce it in the rural areas not just the cities.Usethe army.

Went to my community phelbotomy service this morning to find it had been closed and consolidated with everyone being sent to 2 other community hospitals....

Went to my community phelbotomy service this morning to find it had been closed ...

skodaguy

•4 years ago

6 Replies

Coronavirus - & just had surgery

Hi everyone, please advise me if you can... I’m 51, ET Jak2 negative for 14 years plus psoriatic arthritis & migraines. I take 75mg aspirin, never had...

Hi everyone, please advise me if you can... I’m 51, ET Jak2 negative for 14 yea...

CarolineDavies

•4 years ago

10 Replies

Txt from NHS Coronavirus Service

Hi good peops , for info just this minute had a text message from the above to say I'm identified as someone at risk of severe illness if I catch the big C...

Hi good peops , for info just this minute had a text message from the above to s...

JediReject

•4 years ago

54 Replies

I have heard everything now

I live in a Home Group sheltered accommodation scheme which houses the elderly and people with significant health issues. The Housing Assistant has sat locked...

I live in a Home Group sheltered accommodation scheme which houses the elderly a...

jillydabrat

•4 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2020

Just had a call

Letter

James Cook Hospital Haematology Patients

Short Video From MPN Research At Texas University

PFO, To close or not to close?

ET Hydroxurea and Covid 19

Mpn advice

VIROLOGIST AT MURDOCH UNIVERSITY ON COVID–19

DO MPNs RUN IN FAMILIES?

Has anybody had a txt or message from the NHS yet?

One way of volunteering while you are in self isolation

Spring is here

Haematologist's comments from today

Still none the wiser

Nhs letter

Routine bloodwork and Phlebotomy

The unknown

Text or no text?

Shielding text/letter

Awaiting Diagnosis

CESSATION OF ALL MPN-MATE RESEARCH FOUNDATION FUNDRAISER EVENTS

Uncertainty over MPNs re Coronavirus

12 Week isolation with PV or not?

Tele-video Appointment

Enquiry

Blood test

Thanks Boris for giving us a chance as long as it is not just words. You must enforce it in the rural areas not just the cities.Usethe army.

Coronavirus - & just had surgery

Txt from NHS Coronavirus Service

I have heard everything now

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