Jingles
Member
Hi. My name is Jackie.
I've been a lurker here for a couple of months now, trying to learn. But I've just got more anxious.
I've hoped that somebody would be in nearly the same position as myself, but it doesn't appear to be so. My situation is a bit different, like most others.
(Not meaning to say nobody's situation counts).
But I would like some advice/ suggestions if possible.
I think I need to give a bit of background before I can get any help.
So here goes.
Major apologies for the length, and bad terminology, etc.! (And I know I probably could've made it shorter, but I thought putting most of it here would answer some queries??)
At the end of June I noticed a change in my sight.
My doctor had recently left town, and I had no replacement doctor, so went to the Emergency Room.
Eventually that visit, after tests, etc. showed plaque in an artery in my left eye.
Originally it was thought it was from the carotid nerve in my neck, but imaging showed there was not enough there to justify that.
I was put on meds, and sent home. But was sent for an echocardiogram before I left to make sure it didn't come from the heart.
The next day I was back in the hospital, as the echo showed something that looked like a mass on the mitral valve.
(Should add here that I live in a wee town in northern BC.
There are no cardiologists, neurologists, etc. Most people here are lucky just to have a doctor!
All imaging etc., was sent to Vancouver, BC.)
I'm keeping this as short as I can, and will summarize that by saying that because I had no doctor, I was sent home.
Appointments were made though because of one ER doctor, and I flew down to Vancouver for a TEE & TTE, which were to be followed up with an appointment with the cardiologist.
The tests were done, but the cardiologist became unavailable on the day.
And I flew back home.
Shortening again, I finally had a phone call with the cardiologist on Oct. 7, where he told me that what they thought was a mass on the mitral valve was severe calcification of the valve.
And that because I have a pre-existing condition (see next paragraph), it was too risky to go ahead with replacement surgery.
Pre-existing thingy - I have an arteriovenous malformation (AVM). It was finally diagnosed in 2005, and was deemed inoperable.
But I had stereotactic radiosurgery for it in 2006, which was supposed to obliterate the AVM within 2-3 years.
That never happened, but the radiation did a number on some good stuff up there in the brain, and mucked up my mobility a bit.
So sometimes, I am wheelchair bound.
However....in the years since the radiosurgery, I have never had a bleed (the major concern for an AVM).
So, personally, I don't see the risk.
The cardiologist has never met me, but he is labelling me as frail (he said that to me).
At the time, I never asked what he was basing that on, but I am assuming it was the wheelchair thing.
And it pisses me off!
I do as much as I can to stay fit.
I get on the exercise bike nearly every day. Yeah, it's slow.
I walk on the treadmill too. Holding on real tight some times!
And today, yet again, I brought in the wood from the woodshed to the house when hubby was gone (I hear about it!).
I do as much as I can, when I can.
I am 67 years old. By no means am I frail.
****, I think I am fitter than a few I know of the same age.
And I sure as hell don't want to let a young cardiologist decide that I am too bloody frail to undergo surgery!
Having said ALL that, I am flying back down to Vancouver at the end of the month ( gonna add, it ain't cheap, and we're not exactly rich!), and I am having a heart CT, followed by a face-to-face with the cardiologist. He was trying to get his colleague, a surgeon, in on the meeting, but he has surgery all day. And a phone-meeting will be set up after. (Not a fan - from past experience, a lot is missed, overlooked, etc.)
I am scared shitless. Can I say that here?
I feel I have nobody in my corner.
What I really need right now is the right questions to ask when I finally meet the cardiologist, and talk to the surgeon. It's my life, not theirs, damnit.
I apologize for the length, and/or if nothing's made sense.
I really need somebody to help/guide me. In simple terms if possible.
Thank you so much in advance, sincerely, for any help offered.
Edited for links
I've been a lurker here for a couple of months now, trying to learn. But I've just got more anxious.
I've hoped that somebody would be in nearly the same position as myself, but it doesn't appear to be so. My situation is a bit different, like most others.
(Not meaning to say nobody's situation counts).
But I would like some advice/ suggestions if possible.
I think I need to give a bit of background before I can get any help.
So here goes.
Major apologies for the length, and bad terminology, etc.! (And I know I probably could've made it shorter, but I thought putting most of it here would answer some queries??)
At the end of June I noticed a change in my sight.
My doctor had recently left town, and I had no replacement doctor, so went to the Emergency Room.
Eventually that visit, after tests, etc. showed plaque in an artery in my left eye.
Originally it was thought it was from the carotid nerve in my neck, but imaging showed there was not enough there to justify that.
I was put on meds, and sent home. But was sent for an echocardiogram before I left to make sure it didn't come from the heart.
The next day I was back in the hospital, as the echo showed something that looked like a mass on the mitral valve.
(Should add here that I live in a wee town in northern BC.
There are no cardiologists, neurologists, etc. Most people here are lucky just to have a doctor!
All imaging etc., was sent to Vancouver, BC.)
I'm keeping this as short as I can, and will summarize that by saying that because I had no doctor, I was sent home.
Appointments were made though because of one ER doctor, and I flew down to Vancouver for a TEE & TTE, which were to be followed up with an appointment with the cardiologist.
The tests were done, but the cardiologist became unavailable on the day.
And I flew back home.
Shortening again, I finally had a phone call with the cardiologist on Oct. 7, where he told me that what they thought was a mass on the mitral valve was severe calcification of the valve.
And that because I have a pre-existing condition (see next paragraph), it was too risky to go ahead with replacement surgery.
Pre-existing thingy - I have an arteriovenous malformation (AVM). It was finally diagnosed in 2005, and was deemed inoperable.
But I had stereotactic radiosurgery for it in 2006, which was supposed to obliterate the AVM within 2-3 years.
That never happened, but the radiation did a number on some good stuff up there in the brain, and mucked up my mobility a bit.
So sometimes, I am wheelchair bound.
However....in the years since the radiosurgery, I have never had a bleed (the major concern for an AVM).
So, personally, I don't see the risk.
The cardiologist has never met me, but he is labelling me as frail (he said that to me).
At the time, I never asked what he was basing that on, but I am assuming it was the wheelchair thing.
And it pisses me off!
I do as much as I can to stay fit.
I get on the exercise bike nearly every day. Yeah, it's slow.
I walk on the treadmill too. Holding on real tight some times!
And today, yet again, I brought in the wood from the woodshed to the house when hubby was gone (I hear about it!).
I do as much as I can, when I can.
I am 67 years old. By no means am I frail.
****, I think I am fitter than a few I know of the same age.
And I sure as hell don't want to let a young cardiologist decide that I am too bloody frail to undergo surgery!
Having said ALL that, I am flying back down to Vancouver at the end of the month ( gonna add, it ain't cheap, and we're not exactly rich!), and I am having a heart CT, followed by a face-to-face with the cardiologist. He was trying to get his colleague, a surgeon, in on the meeting, but he has surgery all day. And a phone-meeting will be set up after. (Not a fan - from past experience, a lot is missed, overlooked, etc.)
I am scared shitless. Can I say that here?
I feel I have nobody in my corner.
What I really need right now is the right questions to ask when I finally meet the cardiologist, and talk to the surgeon. It's my life, not theirs, damnit.
I apologize for the length, and/or if nothing's made sense.
I really need somebody to help/guide me. In simple terms if possible.
Thank you so much in advance, sincerely, for any help offered.
Edited for links
