8 replies to this topic

[eithne01]

Hi everyone

hope you guys are all good?. Well finally after all my worrying and wondering, I did it.  I changed my haemotologist /oncologist.

I even moved ot a different hospital.  It was the critical ischemia that wrapped it up.  I just paid €5000 for a machine to help with my circulation,

no grants, no funding and can't claim on the insurance, but i need the machine.  I have to spend six hours a day using this machine for the next six months

and then probably periodacally .

At least I know now it was the meds that caused it.Still hopping mad, but grateful to be here,

Has anyone else suffered from this?

[TeddyB]

Sorry to hear you are going through a rough time.

I read in another post that the switch to Tasigna caused the ischemia? Why wasnt it caught earlier, didnt they do good enough follow ups, i guess thats why you switched doctors. 5000€ is a lot of money, shouldnt the government help co-pay at least?

[eithne01]

Hi there Teddy

i hope you are doing well?  Yes, the tasigna caused the  ischemia. There was no monitoring.

We have tried all the government agencies etc to get help with the Art Assist machine to no avail.  The alternative is unthinkable,

so thank God fo r my family.  Teddy, it was the pain, I didn't know that sort of pain existed.The worst thing for me is that it never should

have come to this, I'm having a hard time moving on from it all.

Regards

Eithne..

[TeddyB]

Im doing ok, nearing my 6 month checkup so i feel i am getting a bit nervous for that, BUT ive gained some weight lately (which for me is a good thing) and i seem to be fitter than i have ever been while on Gleevec, i still get some side effects but they seem to be getting better each day.

So sorry you have to go through all that pain for no reason :/ Hope the worst is over for you and that Gleevec agrees with you.

The payment issue sucks, move to Norway Seriously though, its good to have family to you help out.

[eithne01]

Hi again Teddy

thanks for your reply.. Have to ask, is it 9.05 pm with you now? I wish you all the best for your checkup. I thinkno matter how well we feel

we all get nervous at check up time. lol

[TeddyB]

Yes it is, but we call it 21:05 here

[eithne01]

Do you mind i f I ask how long you have been poorly?

[TeddyB]

i was diagnosed april 2012, in 2 weeks it will have been 6 months since dx

[eithne01]

Oh Gosh, you are so new to it all.  I wa diagnosed in October 2009.  I asssure you that my experience was both

terribly unfortunate and as far as I know isolated.  Last year I went back to college and even though it was tough going at times with pain

I didn't give in.  I got my nine distinctions and God willing I am returning next year to have a bash at my year two. I got a deferral due to ilness

for rhis year and I have to say I miss it all so much and cann't wai to get back into it.  .From here on in it's going to be good news all the way for us!