Jst diagnosed with et

[Frankydafish]

Hello im franky 41 from newzealand. Iv just been diagnosed 2weeks ago my platelets are at 1180 im on aspirin for now and im waiting for the specialist to see me. Its kinda sceary really. Glad to see theres support out thea. Ill just sit back n pack myself till i know more lol.

[Aime]

Hi Frankydafish, sorry to hear you’re joining the MPN ranks but you’ll find tons of support here. A lot of folks have been around a long time so that should be a comfort to you too.

Have a look at the MPN Voice website, where there is information you can trust as, like this forum, it is well monitored. It’s important to learn as much as you can about your ET, so you have some control both over your condition and treatment. Any worries, ask the forum and someone will help and support you.

Eat healthy, keep well hydrated but enjoy your treats too. Kindest regards Aime xx😸😸

[Frankydafish in reply to Aime]

Thankyou ill check out the site you mentioned. The biggist problem iv got at the moment is eating properly as i simply cant aford to as im struggling to make extra coin. Im an artist but havent sold a lot of art. Iv traded lots but only a couple times have i sold for cash

[Aime in reply to Frankydafish]

Sorry to hear that. I find food like pasta, bananas and nuts help with energy levels. Can you get help from the state as you now have a chronic condition? Kind regards Aime x😺

[Frankydafish in reply to Aime]

Wer geting the most help we can currently from the government. But when other bills pop up its hard to feed 2 people on $50 a week. But what can ya do really

[Inca in reply to Aime]

Hi Aime,

I replied a day or two ago to thank you for info on hydro,only to discover my pad ,tho plugged in ,was not charging!!!

You are right ,cos when daughter was here in summer ,she swam every day in our pool,legs improved immensely .We are hoping to get to UK next week so will hope to find hydro therapy.She is in wilds of the country but not too far from city of Bath..they must have something there.

Also to mention,here in Fr. I can buy a lotion to 'wash ' with.'Roge Cavaille Creme Lavante'There are English instructions so may be available in U K .I use it a lot,tho it doesn't replace cool shower when it's hot.Pleasant enough to use and no itching! Best to you Sallyx

[Aime in reply to Inca]

Thank you Sally, will see if I can get the lotion.

Kindest regards Aime xx😻😻

[CommonDaisy]

Hi Franky,

I’m 28 from Australia and also an artist! What sort of art do you create?

We can all totally relate to the shock and anxiety you might be feeling. It’s scary at first but it gets easier and majority of us live pretty hectic lives just like everyone else 😊

My platelets on no medication at the start of the year sat around the same level as you- 1200. It’s good your doctor got you onto the aspirin and I’m sure your specialist will fill you in on other medication options.

If you have any queries what so ever, don’t hesitate to ask. This forum is incredibly kind and supportive. Take care

[Frankydafish in reply to CommonDaisy]

Thankyou i do all sorts of art from paintings to carvings into old headboards and 3d art just whatever i can do with what iv got. Iv got sum work on my fb post. Under tazer harris. Have a look n ill try n put sum more up. Im always looking for feed back or co op works with sumone tht aktully sells there work.

[Frankydafish in reply to Frankydafish]

I only found out i had et becuase my hart was playn up with palpations so i went and got the blood tests done and they dicoverd i had et. Lucky i guess

[stillkicking]

Hi Franky, I'm also from NZ and am a potter and painter! What is it with us artists, we are a rare lot to start with, and it seems we are also blessed with a rare disease as well!

Sorry that you have ET, but it is good that you have found this forum, it has to be the most helpful one around, and it is a great support. I felt quite scared and confused about everything when I was first diagnosed, and didn't get a lot of help at first as the medical people that I dealt with at the time didn't seem to know much about ET. I got much more idea of what to expect, and how to manage things from people on this forum. So do please ask questions if you want some help, and I am sure you will find it here.

Can I ask if you are in the North or in the South Island? I think that there may be an MPN specialist in Auckland, but I don't know of any in the South Island where I live, so our hospital hematologists look after me.

If your health is really badly affected by the ET you might be able to get on a Supported Living Payment from WINZ, rather than the Job Seekers Benefit. I recently managed to get on the Supported Living Payment, because, at 60 years of age, my health is so bad now that I really am not employable!

It does sound like you are really struggling to make ends meet and I hope your doctor could write you a medical certificate to give to WINZ at the very least to make sure you have some help from them.

All the Best,

Peter

[Frankydafish in reply to stillkicking]

Thankyou for youre reply i am in the south island jst out of balclutha so im currently waiting to see a specialist in dunedin. Wer trying to get money sorted but its not easy where we are. Thankyou so much for the support

[stillkicking in reply to Frankydafish]

Hi Franky, I'm just north of Dunedin so I see a Hematologist at Dunedin hospital. I think they have about 5 hematologists there, so not sure who you will get, but we might run into each other there one day. One thing that could help you is to speak with the hospital social worker, she was a real help to me regarding WINZ, and I also see a counsellor at the oncology department. I'll message you some more information if you would like.

Kind regards, Peter

[Frankydafish in reply to stillkicking]

Yes please. Or you could text me on 0278732213 thats my only contact number. This one phone is the only thing we have fir internet and communication. Got to top up soon not sure how yet but thats just the norm for us at the moment. Wer trying to get a housing corp house in dunedin as my missus has ms wich see was diagnosed with last year. Got to go to the hospital next mnth for her

[stillkicking in reply to Frankydafish]

Thanks Franky,

It was good to be able to talk with you. I'll message you some contact details for the Leukemia and Blood Cancer Society, and their support person for this area.

All the Best,

Peter

[Wyebird]

Hi,

This site is fab I love it. I’ve picked up so many tips and much information.

[Mardihel]

Hi if it helps my platelet count was 900 in Feb, that was found just from a routine full blood count, which I had never had before apparently. Had a repeat blood test 2 months later still high, so had letter to go to haemotology in the July, was put on aspirin and 5 more tubes of blood taken, had spleen scan done, and on the 22nd August was diagnosed with ET, was shell shocked put on hydroxycarbamide and on Wed platelet count had dropped to 700, so may take them a while. This site is lovely, great to discuss any probs worries or anything. Always here to help, good luck

[Frankydafish in reply to Mardihel]

Thankyou ill update my status once iv seen the specialist

[Frankydafish]

Thankyou at the moment im still freajn out a bit but thats normal i guess waiting for appointment at dunedin hospital with specialist. Thankyou for youre support

[fee13]

Hi Franky,

I'm from Palmerston North. ET JAK2+ aged 56. There is a nz Facebook site that can have some interesting reading. Introduce yourself as they're trying to get an idea of how many nz'ers have an Mpn.

[fee13 in reply to fee13]

Link here facebook.com/groups/5845383...

You can also search for nearby people by clicking on your picture next to search button and click on "find friends near me". This site is invaluable.

If you feel like your mood needs lifting then check out "still kicking"'s posts, very entertaining!

[Frankydafish in reply to fee13]

Thankyou i will do this as soon as i can aford to top the phone up as thts my only internet access.