Hello everyone,
Im new to the group looks like a very supported group I've had ET for 10 years then got diagnosed last year with MF
my journey has been up and down and the fatigue that hit me at the beginning was scary but I seem to ok now, not working anymore but doing heaps of exercise I have 2 extra mutations which they are concerned about so I went to RNS to meet with transplant doctor I hear back from him on the 15/7/21 so see if the ball gets rolling'''''' must bloody nerve racking at times
but I'm ok until I go to the doctors. Just thought id introduce myself.
Kathie
Introduction
Re: Introduction
Hi Kathie,
Welcome to the forum.
I was diagnosed with ET in 2005. Like you I get very fatigued but have felt better since I started Peg Interferon. HU became a real problem.
Hope you get a satisfactory answer to your transplant problem. It is certainly frightening but one of our members, Warwick is just going through the
process at the moment.
Steve is a great help at all times and a fount of information.
Good luck and keep us posted
Katie
Welcome to the forum.
I was diagnosed with ET in 2005. Like you I get very fatigued but have felt better since I started Peg Interferon. HU became a real problem.
Hope you get a satisfactory answer to your transplant problem. It is certainly frightening but one of our members, Warwick is just going through the
process at the moment.
Steve is a great help at all times and a fount of information.
Good luck and keep us posted
Katie
-
MPN-MATE Admin
- Site Admin
- Posts: 632
- Joined: Mon Apr 22, 2019 11:38 pm
Re: Introduction
Hey Kathie... 
Sorry about my delay replying here... We have just received another New Member of whom you should also introduce yourself to... Sue, you should be able to see here Post above, where she discusses how she had a terrible time discovering for herself how little is known about MPNs here in Australia...
Hopefully, some of our other MPNers will also be along to welcome you shortly...
Very best wishes & stay strong & positive Kathie...
Steve
PS. Kathie, I attributed a pic to your member name, there are a few different ones to select from in your Member's Profile, click-on Avatar & make your selection... Let me know if you need any assistance ok?
Sorry about my delay replying here... We have just received another New Member of whom you should also introduce yourself to... Sue, you should be able to see here Post above, where she discusses how she had a terrible time discovering for herself how little is known about MPNs here in Australia...
Hopefully, some of our other MPNers will also be along to welcome you shortly...
Very best wishes & stay strong & positive Kathie...
Steve
PS. Kathie, I attributed a pic to your member name, there are a few different ones to select from in your Member's Profile, click-on Avatar & make your selection... Let me know if you need any assistance ok?
Re: Introduction
Hi Kathie,
Welcome to the forum.
I was diagnosed in 2017 ( but possibly was living with it much earlier) ET CALR and struggled initially with no support....
This forum is great to chat to people and get advice and support
Hope you get answers from RNS ,and Steve and others on forum have a huge knowledge in regards to MPN
Meanwhile,keep exercising and dont google as I found out stress was the biggest problem in my platelets being very high
All the best,keep strong
Leon
Welcome to the forum.
I was diagnosed in 2017 ( but possibly was living with it much earlier) ET CALR and struggled initially with no support....
This forum is great to chat to people and get advice and support
Hope you get answers from RNS ,and Steve and others on forum have a huge knowledge in regards to MPN
Meanwhile,keep exercising and dont google as I found out stress was the biggest problem in my platelets being very high
All the best,keep strong
Leon
Re: Introduction
Hi Kathie
Welcome to the forum. This is a great group - one where we can seek counsel and support when our MPN journey gets hard. Equally we can support those who are facing some big decisions. Each of our MPN journeys is different but you will find information, great comfort and laughter here. Re me I have ET jak2+ diagnosed 7 years ago and for the last three years have been one pegolated interferon (Pegasys). Good luck with your appointment on the 15th July.
Cheers
Mark
Welcome to the forum. This is a great group - one where we can seek counsel and support when our MPN journey gets hard. Equally we can support those who are facing some big decisions. Each of our MPN journeys is different but you will find information, great comfort and laughter here. Re me I have ET jak2+ diagnosed 7 years ago and for the last three years have been one pegolated interferon (Pegasys). Good luck with your appointment on the 15th July.
Cheers
Mark
Re: Introduction
Hi Kathie
Sorry, I think I missed welcoming you in the group..had so many things going on last month…
Hope everything is going fine…yes it is nerve racking at times…but there are always brighter days!
Keep safe and take care…
Linda
Sorry, I think I missed welcoming you in the group..had so many things going on last month…
Hope everything is going fine…yes it is nerve racking at times…but there are always brighter days!
Keep safe and take care…
Linda