I have talked to my consulant today and he has assured me the symptoms I am experiencing are definitely due to ET and not side effects of hydrea.  He has encouraged me to enjoy my running and sees no reason why I shouldn't train for and attempt the Cardiff half marathon in October.  He is also sending me a letter for travel insurance purposes to state there is no medical reason why I cannot travel abroad by plane. Happy days. 

Hi  everyone 

great to read all the positives on this forum people still getting on with everyday as it comes along .
Keeping up your running and preaparing for Cardiff half marathon a great inspiration to everyone 

Interesting to hear your heamotologist doing you a letter to say no problem with flying 

I was worried about travel insurance when going on holiday other than that I am good

Apart from my close family and work I haven't told anyone about my ET .

I know I have this for the rest of my life with all the help from people on here I have now replaced the negatives when first diagnosed with the positives of regular blood tests and speaking with consultant 

to check my condition and monitor 

Thanks again everyone 

Hi all,

I have recently joined the forum. Thank you very much for all the information shared!  It is so helpful to read what others have been going through.

I am a 38 year old female and I have been diagnosed with ET on the 5th of Feb this year.

I had my bloods checked 4 times between June'19 and Jan'20 and my platelets ranged between 620-710. I was thinking I might have this diagnosis or a similar one, but it hit me really hard, harder than I was expecting. I am also JAK2 positive.

Looking back now I think I’ve had symptoms for more than 2 years but I always blamed my headaches and my visual disturbances on my sinusitis, my tiredness on my extremely busy and stressful job, the pain in my legs on the hours of sitting on the chair in work, my palpitations on my anxiety or tiredness, my shortness of breath on not keeping active and not going to the gym.

 I have always been a very independent person and always worked full time (I am self-employed) and since my diagnosis it just feels like my life suddenly and quickly started slipping through my fingers.

I’ve been through numerous emotions and I am trying to cope but I find it very hard. I think it is mainly because I am not feeling well, and I have more bad days than good days.

The haematologist considered me to be at low risk and I am only taking Aspirin now and I need to go for another set of blood tests in 6months. I am so afraid of these blood tests!

Since January I have been really struggling with shortness of breath (it feels like pressure on my chest that stops me from expanding my rib cage and taking a deep breath), my oxygen levels are good but I feel I am constantly gasping for air. I have also been dizzy and lightheaded (as if my blood pressure is very low despite it being within normal range), cannot focus on my daily jobs, can’t find the energy or the will to do the things I need to do. I want to spend the time in bed as it has become a ‘safe place’ where I am not afraid of potentially fainting (I never fainted so far). I blamed my shortness of breath on the chest infection and tonsillitis I had in January, but they are gone now, even though they lingered much more than previous infections.

I also have daily palpitations and I don’t know if they are related to ET or if I have other health problems as well. I have been checked for pulmonary embolism and it came back negative, also the spleen and the liver seemed to be of normal size. I have a cardiology appointment pending but my heart was checked last year as well, and it was fine.

Has anyone been through these symptoms? And how do you cope, what should I do to lead a ‘normal’ life and also be able to go to work?

I have good days when I feel like myself again and I am active and energetic. But most of the days I am so drained physically and emotionally and struggling to breathe that I just feel like waiting to die even though I realise it is the wrong attitude. 

Everybody has had their own journey and reading here it seems that there is life beyond ET but what should I do about my current symptoms?

Many thanks to all!

Ina

Hello Ina,

I am so sorry to read that you are struggling with your diagnosis and symptoms.  I feel for you.

I would like to say that I am recently diagnosed myself so feel very ill equipped to advise you but would like to say there is a lot of help and support for ET.  Regarding your symptoms perhaps you should talk to your consultant or one of the specialist nurses, they will be able to give you some helpline numbers.  Also, I am a lot older than you at 67 so I was putting my breathlessness and tiredness down to my age, and being retired I am lucky that I can rest as needed.  However, I don't think my symptoms are as bad. You are probably feeling more poorly because you have recently had tonsillitis and a chest infection and it may be you are not properly recovered from this.  I had a chest infection over Christmas and I admit it threw me into a bit of a bad place, feeling ill and coping with a scary diagnosis, I probably went a week with hardly any sleep . It took me a long time to feel better and if you see my previous posts I am in a much better place and looking forward to the future.

This forum has helped me but I do hope you will seek some professional advice to talk through your fears.  It is very early days for you and time and support will gradually enable you to cope.

Keep in touch

Jeanne

Hi Ina,

Sorry you're having such a hard time of it.  I share some of your symptoms (47 year old male, diagnosed at the end of last year).  My mutated gene is CALR and so have been advised to stop taking aspirin as the risk of bleeding with CALR outweighs the other risks.  I'm back in 3 months for further bloods and follow-up, but I found the consultant appointment last week strangely re-assuring.

The tiredness is the symptom I find most difficult to deal with and, like you, it's unpredictable.  Some days I'm very nearly my old self and others I can barely summon the energy to move.  Concentration and recall are badly affected too and I too have a busy and stressful job where attention to detail is paramount, so physically and psychologically, I find it a bit of a trial.  I'm seeing Occupational Health on Thursday to discuss options following my consultant appointment last week.  

I'm trying to take every day as it comes and not focus on the negatives, but it is difficult and it has affected my mood at times.  Helps to know you're not alone though!  I can only echo waht Jeanne has said and hope that you're able to speak to someone to talk through the concerns you have.  We all need a little help to come to terms with both diagnosis and symptoms.

Hello all,

Jeanne and Cosmic-Hobo, thank you so much for your reply and kind words. It does help to talk to people who are going through similar things, it makes it less of a lonely journey.

Jeanne, I would like to be as strong as you!

Cosmic-Hobo, I am so happy that your Consultant found some time to explain and be reassuring. I am trying to work a bit less (at least for a while until I see where I am going with this) and I hope that this can be an option for you too.

 At the moment I don't know if my symptoms are all related to ET or my anxiety is playing a role here as well (or maybe other health issues I may have). I started a diary of my symptoms to see if there is any pattern to what I am feeling. I have also booked a private appointment to talk to another Consultant. When my diagnosis was delivered not much else was explained to me. Looking back now I can only remember the "You have blood cancer. Let me bring you a leaflet" and then me walking down the corridor completely bewildered and oblivious to what was to come.

Does anyone know if the symptoms improve over time or we just have to live like this? Personally, I feel that I can cope with the tiredness, bruising & bleeding (from Aspirin) but the dizziness and shallow breathing are torture when I am in work or driving.

Have a good day!

Ina

Hi Ina,

I can remember only too well my feelings when I received my diagnosis. I am a born worrier anyway and there didn’t seem to be a lot of information on what was going to happen to me. There didn’t appear to be any groups or forums and nobody had seemed to hear of the condition.

I know I went through a period of great anxiety and imagining all sorts of things. In the end my husband made me go to my own GP and he suggested I take tablets for my anxiety to help me through this initial phase.

The tablets helped a lot and after 6 months I felt I could cope more so the doctor took me off them.

That was 20 years ago and I can honestly say I feel absolutely fine. I think once you get your head around your diagnosis and your platelets come down with the medication you will probably feel better. I’m so glad you are seeing another consultant privately as they may be able to explain any symptoms you are experiencing.

Good luck

Vanessa

Hi all  sorry for anyone struggling not that I don't do my own amount of struggling nd worrying 
Got my next consultant appointment on 16 March.

Almost 5 months since diagnosed acceptance makes life a bit easier starting to get back to routine 

tierdness still at times and now worried about catching corona virus will my condition ET make it worse 

Thanks again to all for posts a great help

Michael

Hi Michael, Ina and everyone else I have read about on this forum

As some of you know, I was diagnosed with ET over 20 years ago and, with medication, am fine.  Getting older, of course, but that is a bonus to the alternative (and I don't mean the miracle of getting younger)!

Speaking with my son about coronavirus yesterday, I said that if i get it, that will be a nuisance and if I am very unwell with it, that will also be a nuisance, and if I die with it, that will also be a nuisance, because I will have left some stuff undone for others to deal with, that I wanted to do!  I honestly feel that, if I take all of the advice- wash hands, stay away from crowds for a while, there is not much more I can do and worrying about it, will not improve the chances, just make me feel down and miserable.  If 'Worry' does come calling, put it in a box under your chair.  Take it out sometimes to check whether the situation has improved or got worse.  If improved, put it under the chair again or throw it away.  If it has got worse, work out a solution and make it happen or decide that, if at the moment there is no solution, put it back in the box under the chair and go make a cuppa.  Our camellia is in full bloom, the daffodils and forget me knots are colouring up the garden - Spring is on its way and coronavirus does not like warmth apparently!!  Bye for now. Maureen