Hi everyone 
Good luck Maureen with the 12 week isolation 

My wife to be has also been told to isolate for 12 weeks she's got COPD 

I have not been told but still staying home 

Everybody needs to do this to keep safe until this virus can be controlled 
The fear of getting it with ET makes my mind wander and get bad thoughts about it but I can put it back in its box and carry on 

Last October I thought ET or blood cancer was to be my demise now this .

Thanks to help of this forum and Family I ain't giving up yet 

Thans again to everyone again and all keep safe in years to come we can all write about this

Michael

Thank you Michael.  One week done and I am still finishing off the voluntary work I do for Girlguiding.  We had to cancel events, so letters had to be done, people informed of new dates - probably next year, we hope - phoning other members who live on their own.  Our personal bonus is that our children, aged in their 40s and 50s, are checking up on us by message or phone most days and they are now all working from home.  Everyone is being so kind - even my mobile phone company have said that I can go over my call limit and they will not charge.  We have to make this isolation work and we will get there and enjoy our freedom again one day.  Keep safe.  Maureen 

Hello Anneford,

Thank you for your reply. I am sorry I haven’t replied so far but I needed some time away from ‘ET’ to pull myself together.

I am better now and I hope my experience can help other people in a similar situation. The information and positivity I found on this forum surely helped me when I was diagnosed with ET in Feb 2020.

Like I mentioned before, I developed difficulties breathing back in January and I ended up twice in A&E. My health continued to deteriorate throughout February to the extent that I didn’t want to be alive anymore. Initially I was diagnosed with chest infection, then another chest infection, then tonsilitis and then suspected asthma but my lung tests came back normal. I was then told that I didn’t have asthma and the A&E doctors and my GP started blaming ALL my symptoms on the ET and on anxiety. But I have never been the anxious type and I kept telling them that!

The haematologist refused to see me sooner stating that my symptoms were NOT being related to the ET. I then saw a private haematologist who suspected I may be transitioning from ET to Polycythaemia Vera (very similar disorders but with different long term prognosis). I had another blood test which showed a stable level of platelets at around 670-700 so I didn’t fit the criteria for PV (yet). I had an abdominal scan and my spleen and liver were normal.

But I was feeling worse every day and I started losing weight because I couldn’t eat much. I was extremely dizzy and lacking energy and all I wanted to do was sleep. I had various pains and aches but the worst was that I couldn’t breathe. I was constantly gasping for air, yawning and sighing and my whole rib cage was hurting.

The GP prescribed me Sertraline but after one tablet I developed a horrible reaction that lingered for 5 days and incapacitated me further. I decided not to ever take anything similar again.

At some point in March I was finally seen by a respiratory consultant who diagnosed me with atypical asthma possibly made worse by silent acid reflux. I have always suffered from reflux and the daily Aspirin for ET was probably making it worse.

Since then I have been on steroid inhalers, Omeprazole, antihistamines and tablets for asthma. And of course, my Aspirin for ET. It took a few good weeks to see some improvement and I also needed a course of Prednisolone but I am feeling much better.  My breathing is still not 100% back to normal, but I have improved massively and I feel alive again. My optimism has returned, and I got my energy back too. Mentally I am in a better place too. I hope that I will see further improvement in the future.

Looking back, I see how easy it was to blame everything on ET when it actually wasn’t the main cause of my symptoms. And how Aspirin made my reflux worse and this was connected to the asthma. I know Aspirin itself can induce asthma so I wait for my next haematology appointment to discuss this.

I am so grateful for feeling better. I try to take better care of myself and listen to my body now, which is somehting I never did before. Life is such a precious thing and we really have just one shot at it. 

I hope we can all stay safe in these difficult times!

Hello Inas

It sounds as if you have had an horrid time and am so glad you are feeling so much better.  Our bodies are so complicated that sometimes the smallest thing can put them out of sorts and balancing the right medication, as you have found, is not always straighforward. 

When I was first diagnosed, my platelets were running between 700 and 800, so I was put on a drug to reduce them straightaway - I was 60 then. I am now on a daily low dose of hydroxycarbamide, together with a selection of other stuff to help my heart and stop gout!  I suppose we can't get away with not taking tablets as we get older, but on balance I will keep taking the tablets (as they say). 

I hope the current situation is not causing you too many problems and, if you need it, there are folk who can help you.  Stay safe and well.

Maureen x

Hi

I found out I've got ET in November. I'm only 40 so quite young to have it I believe. I have the CAL-R mutation so less chance of clots which I suppose is a good thing. 
 

Is anyone else here my age & how are you dealing with it? 
 

thank you 

Fiona 

Hi I found out I got mET 21st of march 2020 but had it since 2014 which I didnt know about tell my first visit to haematology  which my doctors sent cos I had high platelets which was 698  started me on 75mg aspirin when a went on my first appointment then took my bloods on the 21st of march which went down to 544 diagnosed me with myeloprolifeative neoplasm of ET type am positive for the jak-2 mutation says it's a low grade pharmacological malignancy with the immediate risk of an increased tendency of thrombosis,told me long term complications are rare and can include progression to myelofibrosis or acute myeloid leukaemia.has there said I fall into the low risk group  to start me on like a said 75mg aspirin  stressed me the importance of a healthy lifestyle  and diet in order to prevent thrombotic complications  told me low grade of cancer no not started me on cytoreductive treatment at moment checking me every 3 months from the date 21st of march all new to me scared me abit when a found out but just going to live everyday has normal I get a few symptoms but I try not to think about it but a feel better now a can to chat to others about it too cos a still dint understand fully about it all but now I e read on here think am getting there nearly  hope u all are well and good 

Dear all

its so good to be able to read everyone's stories.

i was diagnosed 20 years ago when I was pregnant with my third child (aged 35).  Pregnancy had in fact reduced my platelet level which, at the time, around 700.  Following the birth of my baby, my level when up to 1500.  I was immediately given anagrelide and have been on it ever since.  I have had quite a number of side effects including depression and severe stomach problems.  I am unable to take asprin because it causes severe bruising.  A few years ago I was diagnosed with hypertension and then, in 2018, breast cancer.  My breast cancer treatment has ended but I'm still struggling to get back to normal because I'm on a post breast cancer drug which causes extreme joint pain.  In addition to this I have arthritis in my spine.

gosh, putting it all in writing makes it look so bad but it's not.  I'm still working but struggling and have to take medication to help me get to sleep.

thank you for reading.

catherine

Hi to all 

Hope you are all cooping in this very hard time

I am trying to keep as normal as possible 

Listening and reading all the dreadful coverage 

of coronavirus. With ET what happens if I get coronavirus 

Best not to worry about it but it can be hard at times 

Looking forward to meeting family and friends 

Thanks to everyone on here for their posts you're messaging has as always been a great help

Thanks  Michael 

Hi everyone, I like Michael hope everyone isn't worrying too much about this horrible pandemic we are going through . I know it's hard but we have to be positive about this . My mum used to say - don't trouble trouble till trouble troubles you !

just a thought , did anyone  who has no other underlying symptoms get the government letter saying we have to isolate . 
I didn't get one , but have isolated myself ?? It would be interesting to know ? 
take care and stay safe 

Jane

Hi Jane I got a shielding letter on Thursday.   Up till now I've been working, I'm a Police Officer.   I'm now shielding at home like the letter recommends until the 15th June.    I think most of us with Essential Thrombocythaemia will get a letter now as new research shows Covid causes blood clots which we are already high risk of.   Stay safe & stay home.   This was the BBC news article on it Coronavirus: A third of hospital patients develop dangerous blood clots www.bbc.co.uk/.../health-52662065

I'm on aspirin and Pegasys and this is the first time I've been told to shield.  
 

best wishes 

Claire