I have been lucky my count is down and at last blood test stable. Who knows what will happen. I just fill my life and try not to think about it. I live on my own and sometimes it s difficult. Keep positive I m sure it helps.:—)

Hi to my fellow ET’ers,

From sharing my ET journey,  I hope to help people who have been recently diagnosed and others who maybe overly concerned about their future health.

I’m 48 years old and think of myself as having average health. 1 year ago I suffered a PE (large one apparently) which was treated with Apixiban for 3 months then came off as D-dimmer test came back normal. 3 months later I self diagnosed a DVT in right calf which was confirmed with ultrasound scan after visiting A&E. Was put back on  Apixiban for 6 months and last week JAK2 test confirms ET. For last 7 days been taking the ‘poison’ as I call it (hydroxycarbamide) and so far zero side effects. 

I won’t lie, having a chronic blood disorder which requires  taking tablets for rest of my life is not something anyone should be happy about, especially if suffering from side-effects. However, having survived two potentially life ending thrombosis events I feel very blessed to have ET as following will explain.

Working in both life Insurance and medical travel insurance industries for a number of years means that I spoken to literally thousands of people with horrible chronic diseases or other health issues which are truly life changing.

So knowing that ET is relatively easy to manage, has relatively few and severe symptoms and is not life shortening should give a mindset to thinking that there are very many more worse diseases to suffer from. Statically speaking you are far more likely to die from a stress induced illness or incident than ET. To give an example, road traffic accidents cause around 5 people to die everyday.

So my advice is not to think about ET too much but rather focus on living a healthy lifestyle which includes taking medication to prevent complications. To finish on an even more positive note, research is continually looking to improve medication and my guess is in the not too distant future we will have things like gene therapy or nano-bots that can fix almost all known diseases.

I’ve just been diagnosed a few weeks ago by a seeing a consultant after abnormal blood test high platelets. I’m awaiting a bone marrow biopsy. As you have worked in insurance is this classed as critical illness and can I claim. What is the position with travel insurance.

Hi Jpet,

I have written my reply below in good faith and is based on my experience/opinion so is not to be taken as advice.

Based on your short post, I am assuming the only purpose of the bone marrow biopsy is simply to confirm the diagnosis of ET or is your consultant looking to rule out another disorder ? So assuming you only have ET then I'm doubtfull that ET will be classed as a critical illness but as policy cover is not generic then the only way to find out is to check your policy paperwork or phone up and ask - note you will not be worse off by asking. Regarding travel insurance, it really depends on what if any other medical condtions you have. The pre-exisitng medical element of travel insurance is calculated on a points system so the more conditions you have the higher the score so the higher the premium. Another big factor is the country you visit so for example Portugal is often considerably cheaper than Spain due to more people visitng Spain who make more claims and for reasons I dont know the medical costs are higher in Spain. ET on its own is not going to make a huge impact on premiums even if a PE or DVT like I had occurred as they are complications of the ET and not linked to much more serious medical issues like conarary heart disease. As I'm past 6 months of diagnosis and my count is now stable at around 440 I'm of the mindset that ET is not going to be a significant risk factor for a normal holiday (I usually scuba dive) so on my last single trip policy I actually excluded cover for ET or any complications related to ET. Excluding medical conditions should not be taken lightly as if the worst happens then your or in event of death, your family could be significantly financially worse off for the sake of a few quid. My only other comment is that as its early days for you then next time you speak to your consultant about when they would be happy for you to travel - it could turn out you dont have ET or simillar but only time will tell. Hope this helps.

Thanks Rocco very helpful. I’m still a little in shock with the diagnosis as I had no other symptoms.but have now also found to have an enlarged spleen and the bone marrow is to rule out myeloid fibrosis. My plalets are are 556 now from 470 a month ago and rising every week so I am concerned. But I am being closely monitored at present I have been advised when they hit 600 I will be advised to take the chemo tablet but am worried about side effects. I also have auto immune issues too I’m celiac and am currently being tested for lupus as this has also appeared in my recent bloods. I’m 49 by the way.

Hi Jpet,

Appreciate you have more than one issue to think about so only natural for you to be conerned. The  shock will wear off once things settle down. Keep your chin up and take each day as it comes - no good comes from worrying about things you have no control over. Once your full medical picture is revealed and your treatment regime devised then you should find it easier to accept and you'll soon get on with your life. Take care :)

Hi Jpet and Rocco,

Reading through, I was interested to hear about the travel insurance comments you made. I’ve had ET now for about 4 years, my platelets bounce around the 200/300 mark and I’m on hydroxycarbamide to manage.  In arriving at the diagnosis I went through a pretty rough couple of years where I was bleeding and had to spend some time in hospital to get glued and banded.  I’ve not had a bleeding episode for 2 years this summer.  Anyway my wife and I had been saving for years to take the kids to Florida and last year in October (after Thomas Cook initially let us down) we went on the holiday.  My consultant recommended ‘don’t go without comprehensive medical insurance’ I went to several of the big brands and reputable companies, for them to refuse me cover, guess the risk was too high? I ended up at allclear.com a specalist insurer for people with medical conditions.  Premium was over £1800 which really hurt (more than the OGDs I have to have) but got the piece of mind cover that I wanted... the trip went well and I didn’t have to claim (as is always the case with insurance...) but at least if I did develop a problem, I knew I wouldn’t have to sell my house to pay the medical bills out there and get me home... anyway I’ve rambled on enough now.

stay safe people.

Hi UkBeardo

I was diagnosed with ET about 13 years ago having had the JAK2 gene confirmed - I am now 72 and never had any side effects from taking Hydroxycarbamide for 7 years and then for the last 6 years Anagrelide plus the 75mg aspirin. I worked as an accountant all my life and not been exposed to anything nasty as far as I know. I have  had quarterly blood tests at the hospital and platelets remain around 300. Over the past few years I have travelled to Australia, New Zealand, Hong Kong, USA, South Africa, Caribbean and lastly India. I have normal travel insurance with my bank and am asked for only £25 extra premium per annum to cover the ET "risk". Not sure why you had so much trouble getting travel insurance. As myconsultant says,  if you are taking the prescribed medication and it works, where is the extra risk?  

In the last few years, I have had two knee athroscopies, shoulder replacement and herina operation all under anaesthetic and I am still active and go sailing.  I would say to anyone who is concerned by this diagnosis, just take the medication and live your life - there are plent of other things around to kill you!

Hi Jonlea,

Thanks for taking the time to reply and sharing your experiences with travel. In hindsight, I can only assume that my premium reflected my condition at the time. I’d been bleeding and acute some 12 months earlier which resulted in being admitted to hospital for a couple of weeks while they patched me up. Subsequently, I was still undergoing OGDs for observation and banding/gluing under outpatient. For the trip, I wanted piece of mind that I had comprehensive cover however my bank, which offers travel insurance wouldn’t cover me when I disclosed my health and condition. I tried several other reputable insurers who asked the exact same questions as my bank and they too weren’t prepared to offer cover. Allclear.com were the only company to offer the cover for the trip. I guess I could have withheld some of the detail or specified I’d been clear from incident post 2 years, but knowing my luck, I’d have had an episode in the states and the policy would have been void... we all know how quick insurance companies are to take premiums, but will look at the small print to get out of paying out... fingers crossed, I’ve not bled now for 2 years in the summer and my platelets have been stable for at least a year. Before covid, my wife and I were going to see if we could afford a week in new York for our 50th in the summer... once we get back to some sort of normality, I’ll have another look at prices with the bank as I’ll be 2+ years since my last episode. Thanks for your advice and try to stay safe during social distancing.

Geoff

Hi bru

It's not too bad at all when you get used to it.  If ET is all you have, it makes no real difference to your life.  It is a shock of course, and treatment like hydroxycarbamide is daunting, but after a while it sinks in that you have to take the pills a good long time before they threaten your immune sytem.  The main thing is to hope they work! 

They usually do.

Best wishes