Hi i've recently been diagnosed with ET after routine pre op bloods. My surgery was on hold until they foundthe cause of my high platelets. 7monthd on i had bone marrow aspirates n biopsys and now have a diagnosis and am having my gynae surgery in a week!
i've joined lots of facebook groups about ET as my haemotologist gave me a print out info sheet off macmillan website n said here you go n that was about it!
i'm scared,im 45 on aspirin,vitamin D, folic acid, iron supplements, had b12 injection last week, and have tohave clexane inj the week before my surgery and the week after, no aspirin whilst on the clexane.
im
worrying about the future, we were hoping to move house within the next year, but i sure now about a mortgage n life insurance.. has anyone experience of this? we currently have a mortgage would it be easier to stay with same company? i've also been looking at holidsys but imtoo scared to fly now with risk of clots.
Sorry for the essay!!!
Written by
ladydriva
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Welcome to our forum, it really is the best one! You will get lots of advice and help and support here. Also look at the MPN Voice website, that is excellent. It's always a shock when first diagnosed whatever age but you will see there are many, many people on the forum that have lived with a MPN for many years. With correct treatment we have a near normal life expectancy. You may find it difficult to get life insurance, you may be better to hang on to the policy you have if you move house. If you have critical illness cover at the moment you should be able to claim on this as MPN's are now classed as a cancer. There are lots of posts on this forum where people have successfully claimed. Read everything you can from reputable sites, MPN Voice and Patient Power in the US.
You will feel better when you have more information and more in control.
All I can say is that when I was diagnosed this time last year I felt exactly the same. It is a scary time. I had already had holiday book going just 4 weeks after diagnosis and my platlets were high and just starting aspirin and hydroxy, so understand how you feel. I did go on my hols, 4 hour flight, but had injection in stomach to thin blood on way out and back. All ok
Since then have been on several hols . Long flights and short all ok. And shopped around for hol ins as some wouldn't do annual cover. Staysure did and only a little more than normal price.
My platlets are now down and doc not worried about flights now.
I hope you manage to move house and still do your hols.
- surgery: always a worry but sounds like your haem and gynae have been talking to each other, so let's get that over with first and everything else will b a lot easier
- ET: as Judy says, stay with this forum and you'll get good accurate clinically-informed signposting
-mortgage: I got a mortgage with PV, be surprised if it's a problem unless you are marginal for other reasons
- life insurance: will be statistically based and since most people with ET have normal life expectancy, doubt it will be much more expensive......and ultimately you don't have to have life insurance do you?
- holidays: there is a thread on here about flying - most people (me included) do it and just take a few precautions
Hi ladydriva - it is a shock at first but as others have already said, life for most of us continues much as normal.
I was diagnosed at age 47 from a routine blood test like you and 14 years later am still fine. Never had any big issues with travelling or insurance - just a slightly increased premium due to ET.
I was on aspirin only for 12 years and am now on Pegasys due to higher counts and turning 60. Pegasys is working well for me so life has settled into a normal routine again.
Hi Ladydriva, welcome to our forum. We can all understand how worried and scared you are about the future, we all have these thoughts and feelings, but as you can see, there are a lot of us with ET that have had it for years and are still going strong. I would advise you as Judy says to read as much as you can on our website mpnvoice.org.uk and if you like I can send you some of our information booklets, email me at maz.cd@mpnvoice.org.uk with your address. Speak to your mortgage company about your current mortgage and see what they say, it might also be worth speaking to an independent mortgage advisor. Many of us travel on long and short haul flights and as long as you check with your consultant before you fly and follow their guidance you should be ok. Best wishes, Maz
Thank you all for the advice and info..Maz i have emailed with my address.
Gynae surgery all done so now 3/4 months of doing not much! Already driving me insane as feel
okayish, just dont want to undo the work my surgeon has done.
Op went well, shame cant say same about some of the care. Admitting nurse handed over my care whilst i was in theatre to another nurse but left out my diagnosis of ET, so when i was stressy about my clexane n explained why she didnt have a clue. Was similar the 4 days i was an inpatient. Discharge meds regime my haematologist had put in a plan not followed.. I'm a nurse myself and whilst i'm only learning about my ET iknow the haematologists plan needed following so i was on the ball.
Anyways now op over n done with i can start getting my head around n dealing with the ET whilst off work and i have the time so can go back in couple months sorted and in a better frame of mind than when i left ( thats the plan anyway!)
Again thank you all for the advice and support, i'm now going to try book onto 1 of the MPN regional days.
Hi ladydriva I too have recently been diagnosed with ET and I can totally relate to you feeling scared. I was diagnosed about 9 months ago but until a week ago didnt do any research around the condition -to be honest I think I was to afraid of what I might find out. Eventually I went on this site and found the discussion forum. I've read a lot of the posts finding them mostly reassuring- I'm glad you asked about life insurance I was wondering about that too.
Going on meds is my biggest fear, I'm worried about the long term use and the side effects. Good look with your research.
Hi LD, if help, I have know about my ET for 10 years. Im 45 now and have not been on anything other than Aspirin. I fly every year. In past ten years I have done over 30 flights. I wear flight socks as a precaution. I live in Australia so all overseas flights are usually longist. I am a very cautious person by nature but I dont want to put many limits on my happiness and experiences. My wife wants to travel each year back to her home country, and yes there is a risk to me of clotting. But I rather she be happy. This makes me happy.
I keep active and try to eat well, get rest and sleep. I have a spiritual routine to manage anxiety or negative thinking. These things have been the biggest help.
Im just starting to experience discomfort around my spleen and there may be a problem with my Kidneys, but these are still being investigated.
Personally Im aiming for a happy and content life rather than a long one. (if I had a choice). This influences the choices I make.
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