Met someone with ET!

[lizzziep]

I got talking to a lady in the haematology department the other day, we'd just been told there was a hold up in the lab so would be waiting a while for results. After we had both commented it was only unusual if they were on time she asked if I had heard of ET!

I said I too had it, she then told me she was 82 (she didn't look it) and she had been diagnosed with ET in her late 50's and had been on hydroxy for over 20 years with no problems!

So that's a relief for many of us who have worried about living with ET and hydroxy!

Best wishes to everybody!

Lizzie

[WileyFrench]

I’ve never met anyone with ET (but I live in a smallish city on Vancouver Island in Canada so that’s not surprising), or even anyone who has heard of it, so wow! Also that is super-encouraging that the person you met is 82 and has been on Hydroxyurea for 20 years - and looked great! In 20 years, I’ll be her. Thanks for sharing this story.

[Poppy6060 in reply to WileyFrench]

Hi I hope you got good news yourself at the hospital it is good to hear of someone who has had ET for a long time doing so well . We all at times worrie about our MPN changing so thank you for your post it’s good to get such a good feel post stay well Poppy

[lizzziep in reply to WileyFrench]

I've been to Vancouver Island, quite a few years ago.it was lovely! We were visiting relatives who live near Vancouver, I remember the town with all the murals on the walls - can't remember the name of it though!

Lizzie

[WileyFrench in reply to lizzziep]

You would have been to Chemainus, Lizzie. Just an hour and a bit south of where I am! The city of Vancouver itself is on the mainland of British Columbia so you would have taken a ferry to get over here to Vancouver Island - which is a very big island, bigger than England - but with far fewer people!

[lizzziep in reply to WileyFrench]

Yes, Chemainus! We visited relatives in Maple Ridge which is about an hour from Vancouver, and yes we did take the ferry, and we were lucky enough to see some whales on the way over.

[WileyFrench in reply to lizzziep]

How cool is that! I lived in Vancouver for many years, some of which I had a horse which I boarded at my sisters place out of the city, and we rode in Mapleridge quite a bit. Was your trip long ago enough that it was pre-MPN?

[lizzziep in reply to WileyFrench]

Yes it was about 15 years ago. I haven't been abroad since I was diagnosed so haven't had to get travel insurance.

[WileyFrench in reply to lizzziep]

It’s something I’m going to have to look into next Feb when we fly to Mexico. Damn it anyway. I’m assuming people with ET fly places still.

[WileyFrench in reply to lizzziep]

Say, I noticed that you said in a post 4 years ago that your hair had thinned. Just wondering what the situation is these days?

[lizzziep in reply to WileyFrench]

Fortunately I haven't lost more! It's still noticeably (to me and my hairdresser) thinner on top of my head, careful styling disguises it.

[mhos61]

That’s encouraging to hear Lizzie. How are you getting on with anagralide?

Can you not have your ‘bloods’ done a week before? That’s what I do, no waiting around for labs.

[lizzziep in reply to mhos61]

Some departments at my hospital get the blood a week before then there's no waiting about on the day - but not in haematology!

I'm ok on Anagrelide, I get a few palpitations about 2 hours after I've taken it, but not too scary and my platelets are in normal levels at the moment!!! However I have been anemic for a while, so have been on iron tablets for a few months. My iron levels are ok now but the new doctor decided investigations should have been done as to why so she is going to arrange for the camera where the sun doesn't shine and down from the top as well. (let's hope they wash it inbetween!) Always something to look forward too - or maybe not!!

[stillkicking]

Delightful to read that Extra Terrestrial life can flourish so successfully on planet earth as long as magic pills are happily consumed!! Lovely to meet up with someone so encouraging, thank you for sharing that with us!

Peter (Fellow Extra Terrestrial!)

[Tpearson in reply to stillkicking]

How funny that’s what we call it on our household. Makes life easier when you can lighten the illness. I love your biggles updates.

Thank you from a fellow Extra Terrestrial

[lizzziep in reply to stillkicking]

ET is one of my favourite films, I sometimes wonder about the coincidence of getting ET, maybe I should have had a favourite film about winning millions instead!

[katiewalsh]

Lizzie, that’s such great news for so many of us. She didn’t progress past ET, was able to tolerate HU a long time and seems to be quite healthy if she didn’t look 82. Thanks so much for taking the time to share this wonderful news! Katie

[amarylis]

Hi - what an uplifting story. I hope I can add to the optimistic outlook. Although I’m not 82, I’m a mere slip of a lass at only 61 (lol). However, I was diagnosed with ET in 1996 and have tolerated HU for about 12 years with no ill effect. I’m a full-time carer for my 90 year old Mum and am just about to start my second year as an undergraduate at university. An ET diagnosis needn’t be an impediment to a fulfilling and full on life as long as you look after yourself and manage life by recognising your own energy resources. I live in hope and give thanks each time I have my 3 month check-up with my Consultant and she lets me know that my platelet level is still fine and to just keep taking the HU and aspirin. Long may it continue. And to everyone who is living with ET or another MPN, I send good wishes and hope that each of you will be able to go on and do likewise.

[lizzziep in reply to amarylis]

Wow - how do fit everything in? Especially with ET and hydroxy draining your energy!! Well done on the university course, we have to keep our brain cells ticking over!

[Hidden]

Guy’s Hospital has a unit under Prof Harrison that specialises in MPNs so you could meet many people with ET.

[lizzziep in reply to Hidden]

My hospital is in South Yorkshire, and even when the waiting room is full no-one usually discusses their illness!!! (We're probably all in denial that there's anything wrong!)

Lizzie

[Meatloaf9]

Great to hear such an uplifting story of success for someone with an mpn. I wish we could hear more stories from long term outcomes such as this one. May all do as well until the complete cure comes along.

[Wyebird]

Fab and encouraging