5+Years with PV and halfway to Everest!

[Innessant]

Proud that PV did not hold me back on a hike to the highest (major) village in Nepal...and halfway to the Everest Base Camp.Will not lie that it was not easy at age 63 but let this be a message to all MPN's that we still have a lot of boxes left to tick if we want them enough...

[Hidden]

Congratulations, and well done! I have the same attitude as you. I have ET and at 67 still working almost full time, not quite mountain climbing! but I will not let this disease hold me back, as also have lots of boxes to tick!

[Tico]

Yes, very well done, I agree I also have a lot of living to do. When I was diagnosed at 38yrs, I was left wondering if I would see my fortieth birthday but just before chistmas this year I celebrate the big 50. Atb, tina.🤗

[mhos61]

Well done to you, a great attitude!

[Dianne-Guisborough]

Awesome ! What a fantastic attitude and an inspirational achievement ! Really well done !

💪💪 Fab!

Love Dianne xxx

[Marossi]

Very inspiring - well done!

[babbittybumble]

Well done .What an adventure. Bye Gill

[Poppy6060]

Well done enjoy your trip .

[JojoWonder]

Thank you for posting. Very inspiring for us newbies. Sometimes I avoid my daily newsfeed as there seems to be lots of unanswered questions or bad news. We need to see more people like you living your best life whilst living with chronic illness. Congratulations and enjoy the rest of your trip x

[Tico in reply to JojoWonder]

Hi jojo.I read your reply with interest about avoiding your daily newsfeed because of unanswered questions and bad news. I like to reassure you the majority of people still can and do live very fulfilling lives and do live life to the full. I have had 2 strokes but still can enjoy a quality of life with my Grandchildren and family and friends. I sometimes have the minor things like fatigue and vague headaches. On the days I feel totally exhausted I rest but on the whole I class them as an 'off day'. As its the case of we are more than likely to die with our condition than by it. Atb,tina.🤗

[JojoWonder in reply to Tico]

Thank you for taking the time to reach out Tina. It’s nice to get reassurance from someone further down the path than I am. None of us have a crystal ball (thank the Lord!) but hearing stories about people leading full and active lives whilst I sit here with my baby sleeping on my lap makes me feel positive for the future.

I feel fine in myself, fatigue is an issue but I think if you ask any new Mum how she feels she would tell you tired. Unfortunately meds in my case don’t work as expected and the uncertainty of this leaves me feeling a little vulnerable. On the whole I focus on the positives in life and TRY not to think of the what ifs.

I’m looking forward to going to London in a few weeks to meet some more of you lovely people.

Thanks again x x

[Tico in reply to JojoWonder]

Will text you later jojo as my phone nearly dying and i'm going to hold a beautiful baby in my arms, as i'm going to my daughters to see my just gone 13month old and nearly 4yr old Grandchildren. We Mothers and Grandparents are very 'biased' when it comes to Beautiful children. Atb,tina.x.🤗

[Tico in reply to JojoWonder]

Hi jojo, well finally recovered from yesterday with the Grandkids. I've just had a look at your Profile and first post and think your attitude towards being diagnosed and being a new mum all at the same time is wonderful. Going through IVF is no picnic then being smacked in the face with this too!By my calculations your 'little pudding would now be around 13-14 months old the same as my youngest Grandchild Maddie and I know what an handful they can be but at the end of the day I can go home to rest and then Mummy and Daddy takes over then,so it must be hard if you feel the need to rest. You say the meds in your case are not working as expected, what as your Haematologist said in relation to this? Is it a question of bringing your counts into range? Sometimes it takes time for the meds to kick in,sometimes people need a change in meds. However with your positive attitude i'm sure in time everthing will work out. Atb,tina.x🤗

[JojoWonder in reply to Tico]

Yes, my daughter Robyn has just turned 14 months today. ☺️

When diagnosed my platelets had climbed to just shy of 1200. Because they had access to a number blood tests, although undiagnosed with any issue, for the last couple of years and my platelets had been steadily rising they advised peg interferon. I took that alone for a couple of months but no change in my numbers so I was prescribed Hydroxy too. My numbers dropped to 600’s very quickly so I was told to take one a day instead of two which I did but my platelets have now been stable in the 600’s for months. I’ve been told to increase interferon from 90mls to 120ml & recently 140ml per week but no effect on my platelet numbers. None of my meds have much effect in terms of how I feel - I know I’m lucky with this.

I’ve questioned why I’m on meds when others state that I should be classed as low risk because of my age and without any previous issues but I’ve been told that as my platelets were steadily rising it was likely that they would hit 1500 based on the trajectory so far. 🤷🏻‍♀️

I’ve been told that my reaction to meds isn’t what they had expected/hoped as ideally my platelets should be in the normal range with this amount of medication although the plan/hope long term is for me to come off Hydroxy. I’m told that everyone is the same but everyone is different.

Life is very different from a couple of years ago and sometimes that’s overwhelming but on the whole I’m doing fine x

[Innessant in reply to Tico]

Thanks so much! I agree and more and more people see physical illness as part mental state of mind. I doubt I would have done this without the focus that the condition presents.

[kiwitraveller]

That is on my bucket list - love hiking and a good challenge. Good on you.

[Wyebird]

CONGRATULATIONS- I thought a hike up mount Snowden at the age of 62 (ET) was impressive and am really chuffed I did it. Your achievement is in another league.

[Innessant in reply to Wyebird]

Thanks .... funny how things like PV spur you to do things that normally you would file away as " madness".

[Lifam]

Well done and proud of you, keep going!!👍

[jointpain]

A great altitude 🤪 pun intended! Did you find the excess of red cells helpful at altitude?

[Innessant in reply to jointpain]

Hi, In fact I did avoid any venesection to "load up" on RBC's. All I can say is even the porters had to stop every 100 steps or so to rest at altitude.It was not easy but the body held up....we took a helicopter down ( threw money at the problem) to avoid the agonising decent and joint injuries....

[Cja1956]

Good for you! That’s a great accomplishment! I’m also 63 and was diagnosed with ET Jak2 positive over 11 years ago. It never stopped me from traveling, spending time with family, and working. Unfortunately, my illness progressed and I found out in September I have Myelofibrosis. Luckily, I found a new hematologist who is brilliant. Reading positive posts on this site helps a lot. Keep it up!

[Innessant in reply to Cja1956]

Thanks for this news...and good luck with fighting the " next stage". It is amazng what the body ...and science can do. I reckon worst of MF will be mitigated within 10 years looking at medecines progress. Hang in there and appreciate all the small stuff that you could not be bothered with before....

[Bluetop]

Wonderful! Congratulations and thanks for sharing

[ansaseeker]

Congratulations,well done.

[NewBloom]

Well done!! That's a fabulous achievement . Even 100% healthy fit people would find this tough. I'm very impressed and keep going xx

And agree that we have boxes to tick.

I refuse to stop, gym, running and Travel as much as possible. Need breaks at times but will not stop !

[Innessant in reply to NewBloom]

I will not be doing that again...but we all find our own level and achievements. I always say when I see really obese people walking or exercising...well at least they are having a go!

[Timjonze]

Great inspiration thanks for posting 🏔

[Tennismad19]

Well done Innessant. Great attitude....and altitude!

I have the same mindset. I was diagnosed with ET seven years ago at 57. I took up cycling 🚴‍♀️ when I was 60 and in the last three years my husband and I have cycled from the UK to Spain (1300kms over 18 days) aged 61, to Budapest (2300 kms over 24 days) aged 62, and from Constanta on the Black Sea to Budapest (1700 km over 18 days.

Never give in to it!

Tennismad

[Innessant in reply to Tennismad19]

Wow....! I could not do that and admire the increasing level of madness you are showing!Bet you feel so much better for it...and what would your Mum or Dad have said ( if still around) ??

[Otterfield]

Thank you for sharing this experience and many congratulations! I find your achievement inspiring.

[Mazcd Partner MPNVoice]

absolutely amazing, well done, and thank you for sharing this with us all. Maz