New, confused, scared, anxious, help

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

Jingles

Member
Joined
Oct 16, 2022
Messages
10
Location
Northern BC
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
 
Hi

sounds like a lot. However, aside from the congenital vascular issue, which heart valve is being considered?

with respect to:

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.

I would agree with you. You've already reached 67, and you aren't frail.

The site is really focused on valve related issues, but in general I can say that when facing these things the best approach is to not get anxious and life each day and do what you can.

You don't sound depressed, which is a good thing!

Best Wishes
 
Hi

sounds like a lot. However, aside from the congenital vascular issue, which heart valve is being considered?

with respect to:



I would agree with you. You've already reached 67, and you aren't frail.

The site is really focused on valve related issues, but in general I can say that when facing these things the best approach is to not get anxious and life each day and do what you can.

You don't sound depressed, which is a good thing!

Best Wishes
I said it was the mitral valve,
Not trying to be a smart-ass.

And sorry, cos I'm not depressed, move on!
Ok, thanks for nothing.

Editing - because, I thought this site was to help anybody with valve-related issues.
I do have that- but with another issue also.
Does that make me non-site-worthy??
 
Last edited:
I said it was the mitral valve,
Not trying to be a smart-ass.

And sorry, cos I'm not depressed, move on!
Ok, thanks for nothing.

Editing - because, I thought this site was to help anybody with valve-related issues.
I do have that- but with another issue also.
Does that make me non-site-worthy??
You know what - I poured my heart out here, cos I need help.
But ****. Sorry to bother you.
 
I said it was the mitral valve,
Not trying to be a smart-ass.

And sorry, cos I'm not depressed, move on!
Ok, thanks for nothing.

Editing - because, I thought this site was to help anybody with valve-related issues.
I do have that- but with another issue also.
Does that make me non-site-worthy??
By which valve, pellicle meant if they can work out to replace it, have you looked into your options? Mechanical? Bio-prosthesis? Can they go in via catheter?

No need to be hostile when people do respond trying to better understand your question. If that’s how it’s going it’s going to be, I’m not sure what you’re expecting by posting in the first place. Clearly you’re frustrated with the situation and understandably so. Hope you get a face to face with a cardiologist and can sort some things out.
 
said it was the mitral valve,
Not trying to be a smart-ass.
I missed it in the post, you seem to have given me a hard time for a reading error
The next day I was back in the hospital, as the echo showed something that looked like a mass on the mitral valve.
which could be a number of things and its too early to call.

I'm really sorry I missed that, perhaps if you'd laid out the text a bit better, but it seemd like 90% of it was anger at your cardio and then a whole bunch of discussion

Personally I have no objection to what you choose to post here (even refrigerators if you like), I was just trying to offer something (having missed mitral valve) and you seemed might angry with me straight up.

Best Wishes
 
By which valve, pellicle meant if they can work out to replace it, have you looked into your options? Mechanical? Bio-prosthesis? Can they go in via catheter?
that's kind of you sir, but I flat out missed it in the rest of the writing.

Again @Jingles my apology for not properly reading every word carefully
 
By which valve, pellicle meant if they can work out to replace it, have you looked into your options? Mechanical? Bio-prosthesis? Can they go in via catheter?

No need to be hostile when people do respond trying to better understand your question. If that’s how it’s going it’s going to be, I’m not sure what you’re expecting by posting in the first place. Clearly you’re frustrated with the situation and understandably so. Hope you get a face to face with a cardiologist and can sort some things out.
If it sounds like I am attacking anyone, I am sorry.
I wasn't deliberately being hostile. I am scared out of my wits right now.
The tears are flowing. I really am so, so scared.

I have no idea what is going on.
As in my original post, all I know is that the cardiologist thinks it is too risky to go ahead with replacement surgery.
I have nobody my end.
I really was only asking for advice etc., what to ask the cardiologist when I finally meet him.
I did actually say that in my original post.
So please, everybody, go easy on me.
Right now, the tears are really flowing cos nobody seems to understand what I am asking.
And I need at least one person to understand.
 
oh, and @Jingles , my reference about the focus of the fourm was just to attempt to give a basis on why you may not get too many people helping ... as I don't know how many here have experience with AVM
 
oh, and @Jingles , my reference about the focus of the fourm was just to attempt to give a basis on why you may not get too many people helping ... as I don't know how many here have experience with AVM
Fair enough.
I don't expect anybody to know what an AVM is. Heck, I didn't know what it was till I had it!
I think you could all say something similar to that with the valve stuff?

What I'm asking for is, if possible, what questions do I ask the cardiologist, based on any pre-existing conditions.
Or, complications, etc.
This is my bloody life they're talking about. And I'm not going to take it sitting down.
(I'm a Kiwi living in Canada, and will always take it on pellicle. [that was a joke by the way])

I've read a lot here, and you fella's have a lot of knowledge, and I know I'm asking for something a bit different.
But other than a Facebook site (shudder), there's not much out there.
If you can't help fine, but please don't give me shite. Ok. I'm trying my best with my shot nerves.
Please believe me that I'm not here to attack anybody.
 
Don't be afraid to get a second opinion after you get your cat scan. If they cant do traditional open heart surgery on you ask about TVAR. You might also check with the cleveland clinic after you have your ct and let them have a look.
 
I was going to suggest what 70sdiver posted. Perhaps you can forward the diagnostic results to Cleveland Clinic or another top heart hospital for a second opinion on your options from some of the top rated surgeons out there. After that, they might provide a telehealth visit initially. I wish you the best.
 
I was going to suggest what 70sdiver posted. Perhaps you can forward the diagnostic results to Cleveland Clinic or another top heart hospital for a second opinion on your options from some of the top rated surgeons out there. After that, they might provide a telehealth visit initially. I wish you the best.

She "might" be able to get an opinion from the likes of the Cleveland Clinic, but that would definitely fall outside the normal practices of the Canadian health care system, and there would not likely be any funding. There would absolutely not be funding for surgery in the US unless it could be demonstrated that the care needed simply can't be provided in Canada. Options in specialty centers in other provinces would be explored if needed, but Vancouver and UBC are major centers, so odds are consults will be kept local. Just FYI for those providing advice based on experience in the US
 
  • Like
Reactions: Eva
I’m worried that something I say will make it worse for you somehow but I’ll try to put myself in your shoes and think about what I would ask at this next appointment (and follow up with the surgeon).

1. What were the findings of CT? The very fact they they are still testing you and looking to bring a surgeon into the consult would seem to indicate they are taking the possibility that you *could* be operable after all, or at a minimum taking the time make sure and to explain why not. It actually sounds like they ARE taking you seriously rather than writing you off.
2. What are your options, what are their recommendations and why?
3. What are the risks of the different options (including doing nothing now, and monitoring - for perspective I have had mitral calcification for decades now, they are waiting for symptoms or certain changes to the ventricle before the benefits of surgery outweigh the risks).
4. How does your preexisting thing impact the treatment plan? Specifically is it concern about bleeds, or something else? Is there a way to manage this risk, both during surgery and after?
5. What do they recommend as the next step? Is there a window for acting? What parameters are they using and what would change their mind? What should I watch for and report?

Thinking of you and sending compassion.
 
She "might" be able to get an opinion from the likes of the Cleveland Clinic, but that would definitely fall outside the normal practices of the Canadian health care system, and there would not likely be any funding. There would absolutely not be funding for surgery in the US unless it could be demonstrated that the care needed simply can't be provided in Canada. Options in specialty centers in other provinces would be explored if needed, but Vancouver and UBC are major centers, so odds are consults will be kept local. Just FYI for those providing advice based on experience in the US
I'm aware she would have to pay in the USA but second opinions are not that expensive. I know that here in wa. state we get quite a few self payers from Canada having heart surgery done.
 
I know what hopeless feelings feel like. I used to be in an HMO here in the states and I just hated it because of the lack of quality and professionalism of the doctors in those type of organizations. As a poster has said, I would seek out a cardiologist or someone who has experience and has a good reputation, and many from Canada do come over to the United States just because of that. If you are that troubled as you sound in what you have written I would definitely consider it. I personally didn't see anything wrong with Pellicle's post, he is usually quite straightforward in his approach and quite knowledgeable. I hope you find someone that will help you!
 
  • Like
Reactions: Eva
Back
Top