Are most of you with et able to work?
Essential thrombocytosis and work: Are most of you... - MPN Voice
Essential thrombocytosis and work
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Irishgal12
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43 Replies
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Hello Irishgal12, I was diagnosed with ET in 2001 and worked full time until 2012. I then went part time because my husband retired and we wanted to spend lots of quality time together. I am now 58 and still working part time.
Have you now had a diagnosis and if so, are you feeling less anxious? Lots of support for you here so keep asking whatever you need to xx
No not diagnosed yet but other tests were normal so I think its going to be the jak2
Hard to generalise. It will depend on how you feel and the type of work you do. But that is true for anyone, with or without an MPN.
Try not to anticipate the future.
I am almost 68 and still working as a nurse doing shift work. No problems.
Irishgal12• in reply to
That's good am a nurse
I have just turned 40.... I was diagnosed with ET last March after suffering headaches..... (I have had a headache since 14th February 2019) and extreme fatigue.... I am also a nurse and have been in long term sick leave since April last year.
Sorry to hear do u feel unable to work with your condition
At the moment yes.... it’s really hard to explain when people ask me but the only way I can describe it is you know just before you get a cold and your whole body aches and hurts and you have a muzzy head and your cheeks hurt... this is how I feel all the time and as the day goes on it gets worse....
Sorry to hear and is that et related
Yes it is x
Some people have no symptoms others do
I’d already retired (early) when I was diagnosed with ET - but apart from the initial shock of being diagnosed - nothing in my life has changed. I’m still the very physically active, sporty person I’ve been my whole life. I could still work if I wanted to. I still workout 5 days a week - cycle classes, weights etc. I still go on pretty strenuous hikes. I’m lucky that I have no nasty symptoms as my platelets are pretty high at 900.
Hi I work full time doing shift work, this causes me to have severe bouts of fatigue, I applied for flexible working which my employers turned down. I then asked for a medical which they couldn’t refuse. The Dr at the private clinic put in his report that he advises I have a maximum shift of 8 hours, no night shifts and flexible working pattern, he also pointed out that my illness falls under the DDA. I now have more than what I originally asked for all because they refused me any help.
Hi
I was diagnosed at 38 with really high platelets after complaining about dizzy spells and foot pain.
After taking aspirin these subsided. I never stopped work and have a reasonably stressful job that involves lots of travelling (long and short haul).
I am now on Hydroxy for platelets and still aspirin and am still working fine. Your life doesn’t have to change too much and you may find being diagnosed helps relieve a lot of symptoms.
Hope you get an answer soon
Joe
How do you cope with the long haul flights? Do you use compression stockings? Blood thinner injections?
We are all different how out MPN's affect us.
I know some while ago there was a regular poster on here who was campaigning to have a change in the pension system to allow you to claim your pension earlier if you had a lifelong illness like an MPN. I cant remember her name, would love to know how that was going though,
I was diagnosed with ET in 2009 and kept working until 18 months ago, when I took (slightly) early retirement. However I do work 1 day a week in a different job.
I do get tired sometimes, but then i think everyone does.
I hope you’re able to keep working - if that’s what you want to do. It is a bit daunting when you’re first diagnosed.
Hi irishgal, from the replies it does depend on how one feels and the job and support they get. I have ET and am able to work but I do struggle with concentration and fatigue on certain days. My platelets are now normal but I take loads of HU on a daily basis. I’m in my early 50’s and in a very senior management role and my employers are actively looking at distressing my role and allowing me to work flexible hours if I want. I always seem to get fatigued towards the end of the week. I’m up at 5 in the morning and get home about 7 in the evening.
Don’t worry too much.
Early retirement will be if I win the lottery 😁.
Yes I’m going through a similar thought process. My employers are 100% supportive.
With my symptoms I have been told my employers would support early retirement.
I also sometimes struggle with motivation but my major issues are my memory (this is my concern not my employers) and fatigue.
I hope one day I will waken up with the understanding of what decision I should make.
What to do if I do retire early. What would get me out of bed on those different days.
At the moment remaining working seems to be the winner. But On my struggling weeks (usually with an infection) all I can think about is retrial. Stress certainly increases my symptom burden.
My early retirement would be emotionally difficult as well as financial.
Good luck with whatever is best for you.
Retiring early was the best thing I ever did for my health. My stress levels dropped dramatically and I think that is a key issue. We manage on a lot less money, my grandkids keep me going and I’m so much happier.
Kindest regards Aime x😻😻
Hi I also have et just gone on HU & also take aspirin. Still work full time in a fairly stressful job. Will be 60 this yr & taking partial retirement going down to 3 days a wk. Decision was more to do with home life balance rather than the ET.
Applesnpears has given a very good reply. ET leaves you tired . Statins make you tired anagrelide makes you tired hydroxicarbomide makes you tired. Anaemia makes you tired. The high dose of drugs make you tired. You must fight it to some extent though. In all I try and think of illnesses I’m better off not having. Good luck.
Hi I’ve had ET for 35 years or more and worked in farming all my life never had a day off due to ET it’s a case of you have something that is the mildest form of a blood cancer and very treatable so it’s just a case of getting on with life
Hi Chemo01.
Wow, that’s inspirational...35 years and seemingly low symptom burden.
Do you know your which mutation you have, or are you triple negative? I’d be interested to know.
I have absolutely no idea,when it was diagnosed back in the mid eighties I don’t think they even identified it as anything other than ET, quite often I think your better off not knowing too much information that way you don’t dwell on it too much and let it dominate your life, I do think a lot of the symptoms people mention are psychosomatic, an example of this is each year as February upto April arrives I get phantom pains around my liver area, the reason being my first wife died from liver cancer, diagnosed in February 2006 and lived just 6 weeks from then and died on April 9th so between these dates she is obviously more on my mind than usual and each year without fail this happens to me, the mind is a powerful thing and can conjure up no end of symptoms if you let it, So the answer for me is don’t let it!
Yes, the mind is certainly a powerful thing.
Your wife dying within six weeks of diagnosis must have been devastating for you. It is understandable how that has also affected you with regards to the psychosomatic symptoms that you mention.
I consider myself lucky, as I don’t suffer symptoms other than the odd bout of fatigue. Prior to being diagnosed, I did suffer occasional dizzy spells and visual disturbance. However, when I began aspirin and hydroxy they disappeared.
I do believe that there are differing levels of symptom burden in the MPNs, in that some get a ‘heavier load’ for whatever reason.
I have had ET for 11 years, interferon injections 2x weekly, i still work, but cut my hours to 25hrs a week, i also work for NHS . Still get tired but keeps me active x
Where u able to choose interferon
• in reply toIrishgal12
My partner was given the choice of what medication to take when medication became necessary. Peg interferon was one of the choices but he went with HU.
No because i was 39 at time said interferon was best option for my age, i was on interferon 2b, but they changed it to 2a because hospital could not get 2b anymore last year x
Any side effects
No not really, after injection i get hot flushes for a few hrs, so i take at night .
I worked for 40years with ET, including after the progression to PV. Note: I never encountered the fatigue that some do. Never any issues with fatigue until the phlebotomies made me too anemic. With that, I have just had to pace myself. I push through it when I need to, but try to pay attention to what my body is telling me. I do limit caffeine to 1x/day to avoid the crash and burn thing that happens when it wear off.
All the best to you.
Thank u. Am scared as I could have anything
How long did u have et before pv
About 25+ years. The line between ET and PV is not hard and fast. It is more like a spectrum where it is not always clearly one or the other.
I sure hope you get some answers soon so you will know what it is that you are dealing with. Regardless of what the "it" is - do think of it as a long term health issue to manage, not an impending harbinger of imminent doom. Sure there can be challenges along the way, more for some than others.
I do say the Serenity Prayer every day - the whole thing. It has great relevance for those of us with MPNs. Wishing you much serenity! (Just said one on our behalf)
All the best.
My MPN specialist considers ET and PV to be essentially the same disease pathology.
When I told him I thought I had PV instead of the diagnosed ET he said it didn't really matter as they were basically the same.
Not sure I would go that far in that increased erythrocytes in conjunction with increased platelets are what increases risk of thrombosis generally speaking. Platelet count all by itself is not nearly as much of a risk factor. Plus with PV treatment, phlebotomy is a mainstay of the treatment protocol due to the need to control erythrocytes. This is particular important for me as I turn out to be HU-intolerant. I am on a phlebotomy-only protocol. I was ET for many years then progressed to PV. There is a continuum of MPN disorder between ET and PV, so sometimes the diagnosis is not so clear. I think what really matters is that you be on the right treatment protocol to control the symptoms.
Here is an interesting treatment protocol I just found recently
ncbi.nlm.nih.gov/pmc/articl...
All the best to you.
Yes. I'm an outside sales rep (literally outside because I sell to construction sites) and did fine until recently. I think a year on hydrea is a bigger issue with how I feel than ET. Dx 2013.
Yes, but ma unable to perform job to my standards. Retiring early in June due to ET. Now Still work full time, but miss about 3 days a month due to symptoms.
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