I have posted on here a few times and read all your posts daily. I am struggling at the minute with this illness.
Brief background - 46 years old and was diagnosed with MPN JAK + , most likely ET In November 2016. I have been told I am a complex case as the highest my platelets have been is 466! However even at this level I unfortunately suffered from 2 x splenic infarcts which led to my diagnosis. Considered high risk because of this so started Hydroxyurea and clopidogrel.
Unfortunately the pain from the infarcts has been long standing and a recent CT scan showed tight stenosis of my Celiac Artery and an aneurysm on my Splenic Artery. Currently on morphine patches for the pain which is really difficult as I am trying to continue 'normal' life, working etc.
I have been referred to a vascular surgeon who I am seeing next week but am really interest to know if anyone else with ET has suffered from these problems. I have researched a little bit myself and from what I understand the likelihood is that these have also been caused by a blood clot. As you can imagine my head is all,over the place as I read all the time that the majority of ET patients have much higher platelets and no blood clots. It is scaring me as to what is happening with my body!
Any advice anyone ?
Lorraine xx
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I totally understand your head being all over the place. How much you have to cope with at such a young age. I haven't had any infarcts - so can't be of any help there. Maybe someone else on the forum who has experienced this can be of more help.
Your story certainly highlights the complexities of ET. This at least goes to prove that relatively low platelet counts can also be significant. Mine were 500 at diagnosis! I count myself lucky that this was picked up on a routine blood test before anything untoward happened.
Are you under the care of a haematologist who specialises in MPNs? If not, it might be a good idea to have a consultation with such a Specialist - or better still, Claire Harrison. I don't know how possible that is in terms of your location - but it would be well worth it to have an expert opinion.
Thank you Mary. I do see an MPN speacialist in Birmingham however she does say they have not really had much dealings with ET causing infarcts etc even though they are aware this happens. It doesn't help as I have then been referred to the vascular team as they all have their own specialist areas but the vascular team do not understand ET!!
Hopefully, as you say, there may be someone on this site who has had similar issues and can share this.
What a dreadful time you are having Lorraine. Sorry ,I cannot advise ,only sympathise.Have had over 7yrs of P V had many 'scares' and different vascular and Doppler ,M R I scans too.I live most of the time in France,near to hospital that knows about M P Ns,but recently in U K I had cause to go to Urgence after being knocked out by a crazy dog,no -one in the hospital knew what P V was !We carry all my medical details with us always,so my husband was able to explain to medical staff there.It really is scary that Drs are not aware of our disease.Wishing you well and that you soon get all sorted.Very best to you and kindest thoughts. Sally
Thank you Sally. It was hard enough when I was first diagnosed now it seems every time I go to hospital there is something else to deal with! I cope ok most of the time but sometimes just have days like today when I'm completely frustrated with it all !!
Hi Inca, love your new dog bye the way just so gorgeous!!! What I wanted to say is that fir the last 2 years I've been asked by my local hospital to be a patient for students in there final year. 20 students prod and poke, under supervision and in the 40 students that 'examined' me every single one -bar one- made the correct diagnosis. The one who didn't was nearly there but nerves got the better of him. These were students from all over the big hospitals in Ireland and they impressed not only me but the examiner as well with there knowledge. I'm posting this to give hope to people with MPN's that hopefully more Doctors going forward will be very well informed. The general public that I've come across have never heard of our illnesses and of course we look so well!!!! Hope this gives hope to you all and i know of one of the students who is going to specialize in haematology in my local hospital. She really was great overall.
I know,we all get that feeling of not being able to cope,try to stay strong and positive,so hard I know,my good Dr prescribes a mild tranquiliser and muscle relaxer,that helps and it is not addictive.You are so young,it's a really difficult thing to deal with.....but I must tell you ,I am in my 70s,I am Proffessional sculptor,still work,keep horses and Shepherd dogs,sorry German Shepherd......it is important to keep going with things you love to do,tho as you will know ,the fatigue wipes you out often and I am lucky that my husband looks after me and the animals when I am so fatigued I am useless. Keep positive...we do survive and this site is a life saver......Sally x
Hello Lorraine, I haven't had any infarcts myself so can't offer any advice, but just wanted to say I hope you get it sorted out soon, and to send you my best wishes. Maz xx x
Thank you, appreciate that. Fingers crossed that tomorrow I may have some answers. Don't know what I would do without the support of this site sometimes ☺️
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