Wait time from diagnosis to surgery?

[Anya]

Hi everyone,
I was diagnosed last October with "severe" mitral regurgitation and Afib following a visit to the emergency room. I saw the surgeon in December and he recommended a valve repair and would also deal with the Afib at the same time. He anticipated the surgery would be done sometime in January. Well folks, January has come and gone and we're now into mid-February and I've heard nothing. I've called a couple of times and was given the old "he hasn't scheduled you yet" routine. In one way I'm dreading the OHS but on the other hand, I want to get it over with and on with my life. So I was wondering given my condition, are my expectations for a surgery date too high? I don't want to keep calling them (have called about 3 x's since early January), but I am worried I'll have a heart attack one of these days and that it'll be too darned late to do anything!

In the meantime I've had an angiogram and TEE test and am on lasix, low dose beta blocker and low dose aspirin.

Thanks for any input and/or advice.

 

[clay_from_nj]

I think I would consider talking to another surgeon. What has your cardiologist had to say about this?

 

[Lynlw]

I'm sorry to hear you are having to wait to long and no answers. I live in the US, but remembered a few threads from people on Canada about waiting, I dont know if this helps http://www.valvereplacement.org/for...erta-Provincial-health-care-system&highlight=

 

[Roberta]

Hi everyone,
I was diagnosed last October with "severe" mitral regurgitation and Afib following a visit to the emergency room. I saw the surgeon in December and he recommended a valve repair and would also deal with the Afib at the same time. He anticipated the surgery would be done sometime in January. Well folks, January has come and gone and we're now into mid-February and I've heard nothing. I've called a couple of times and was given the old "he hasn't scheduled you yet" routine. In one way I'm dreading the OHS but on the other hand, I want to get it over with and on with my life. So I was wondering given my condition, are my expectations for a surgery date too high? I don't want to keep calling them (have called about 3 x's since early January), but I am worried I'll have a heart attack one of these days and that it'll be too darned late to do anything!

In the meantime I've had an angiogram and TEE test and am on lasix, low dose beta blocker and low dose aspirin.

Thanks for any input and/or advice.

Hi Anya,
Sorry to read that you are not getting any response from your surgeon's office. That is frustrating to say the least. I also live in Canada and luckily didn't have any issues with a wait time. When I did meet my surgeon he said I should have surgery within the next 3 months or so. After he left the room, his nurse picked up her little black book and we booked a date. I ended up having surgery about 4 months after the surgical consult and Ct angiogram . The original date was changed as my surgeon was out of town on the date surgery was originally scheduled. Personally, I would be contacting your cardiologist to see what is up with not getting a reply from the surgeon's office. Perhaps, your surgeon doesn't feel it is as urgent as you do (of course I am only guessing). I know that once I knew surgery was ,I too wanted to get it done and over with.
All the best.

 

[Anya]

Thanks for your replies. I was beginning to think I was being too pushy, but in reading your posts, it looks like I should have had a date by now. I did mention to the surgeon that I lived alone and wouldn't have any babysitters after surgery and asked if he could arrange a few extra days in a rehab facility and perhaps he's trying to coordinate beds!

@ Clay. I called my cardiologist's office and spoke to one of his many secretaries about my concerns and asked that he give the surgeon a prod, but I haven't spoken to the Cardiologist directly about it. The surgeon assigned to me (by the cardiologist) is quite the rock star of OHS and the hospital has a huge cardiology department, so I do have the utmost confidence in the guy. I'll give him some more time, but if I continue to get pushed back, I'll definitely look at one of his colleagues who may have a shorter wait list.

@ Lynlw - thanks for the link I'd never have found it! Looks like I'm in for some colourful reading

I'm going to call them again tomorrow and try to pry a date out of them. I'll report back……..

 

[Freddie]

A fellow Canuck, Welcome to the site Anya.
I'm thinking that since you are now on some medication "this" surgeon probably feels it's enough to keep you stable, but with our health system it's better to nag and push for answers even if that means making appointments even with your GP to get some answers.

I too had severe mitral regurgitation and they kept me in for a week after going to the ER to get a angiogram done. The day I was discharged I was told I needed surgery and to phone the surgeon office on Monday which I did and had surgery that same week on Friday. So I didn't have to nag any doctors for a date, but since then I have learned that if I'm not going to get answers on the phone I make appointments.

Good Luck and keep us informed.

 

[Anya]

Thanks for the welcome Freddie. I'm so envious of your speedy treatment, but sounds like if you had to go to ER for the angiogram, your case was more urgent than mine appears to be.

Having called both the surgeon's office and the cardiologist's office this morning, I'm more frustrated/confused than I was yesterday :frown2:

Surgeon's office - more stonewalling by his gatekeeper. Waiting on his March Schedule. I reminded her she'd told me in January she was waiting on his February schedule. "Well you're not the only one waiting, there are a lot of other people waiting too". When I asked her if I should be perhaps looking for another less busy surgeon I got the "its up to you" response. Honestly guys, I could have cried!!!

Then I called the cardiologist's office to see if some pressure could be exerted there, only to find that he doesn't have my Angiogram results from the hospital on file and she will have to get that report for the cardiologist to review. WTF!!! What does the Angiogram results have to do with my surgery date - the surgeon has the results, isn't that all that matters?

Give me strength :rolleyes2:

 

[clay_from_nj]

It's funny how the waiting time varies depending on what country, state, or city you're in, or even what hospital or surgeon you deal with. My father had his AVR in the year before I had mine, and he had an initial wait of several months, only to be pushed back further a couple of times. When I first met with my surgeon, he said we could go next week if I wanted to. Primarily because of different insurance, we went to different hospitals, both in Denver, Colorado. (I didn't meet Dad's surgeon, but I'll bet he's not the confident, almost swaggering, rock star that Dr. Ammons is.)

 

[Jkm7]

Sorry for your distress at getting a surgery date. The wait is the hardest part of this experience, IMO.

It is important your cardiologist reviews the angiogram as that gives much information as to the condition of your arteries and valve. If you were severely ill, they would have you at the top of the list but it is likely you are not as ill as some others and your health system might work that those who need it most get it first? Frustrating, I am sure.

Hopefully, you will get news soon. Please share with us when you do.

 

[Freddie]

Anya, I went to the ER for SOB (shortness of breath) and they kept me in the hospital to get the angio done asap or as soon as they could squeeze me in. Better to stay in the hospital than to be "called-in", plus they had found me a bed and it wasn't in the hallway lol.

Although it's hard, try not to get upset. Make an appointment to see your cardiologist and tell the gatekeeper that you expect that he/she will have the results by then so you can get some answers. Also, go see your GP. I know they lower on the scale as far as doctors go but they might be able to apply some pressure to help you.

Heck it won't hurt to get a second opinion, which you GP should be able to provide for you.

 

[Adrienne]

I also had severe mitral regurgitation. After having endocarditis in 2004 and wanting a second (or even third or fourth) opinion about surgery, I spoke to the chief of surgery at the Montreal Heart Institute. I knew that I wanted him. He said to make an appointment in 6 months after having another echo. I had the other echo but was still waiting to see the surgeon again. Then I went into A-Fib which (with my severe regurgitation) put me into heart failure. I ended up in the ER of the Heart Institute. They said the time had come. The problem was that my surgeon whom I got to speak to in the hospital was going out of town for two weeks. I only wanted him to operate because I was sure I would not get a repair if just anyone did the operation. So, they put me on all kinds of medication to keep me stable, and I finally had the operation almost two months after that.

By the way, the surgeon was the same one who did a bypass operation on Jean Chrétien (one of our ex prime ministers) a few years later.

When I had the first consultation with my surgeon, I remember discussing wait times, and he said it was usually around three months, but that was almost 10 years ago so it is probably worse now!!!

 

[Anya]

Hindsight is 20/20 I guess. I requested my Dr. refer me to a Cardiologist affiliated with Sunnybrook Hospital as it was close to home, rather than "his" hospital which is downtown. In turn my Cardiologist referred me to Dr. Gideon Cohen at Sunnybrook for the surgery. Dr. Cohen is the best and one of the first surgeons to perform the Maize procedure for Afib here in Canada. CBC did a feature on him which is posted on YouTube and yesterday he performed bypass surgery, with each step in the process Tweeted for educational purposes. So he's quite the celebrity. In retrospect I should probably have opted for the downtown hospital, and just a plain old, camera shy cardiac surgeon.
Thanks for sharing all your experiences and the words of encouragement. They are truly appreciated!

 

[ManiSham]

Hi Anya

Sorry to hear that you are in the waiting list, but can't you make an appointment to see the surgeon and then ask him rather than calling his secretary. In my country, if you are going to a private hospital there's no waiting list but in the public hospitals there is a long list since its free of charge ( no insurance required)

Don't worry about it,just try to keep yourself occupied so that you are not thinking about it all the time.

Will pray for you

 

[clay_from_nj]

So he's quite the celebrity. In retrospect I should probably have opted for the downtown hospital, and just a plain old, camera shy cardiac surgeon.

I think that often folks obsess way too much over getting the "best" surgeon and the "best" hospital. (Long discussion threads that make it sound like it's hard to find a decent thoracic surgeon, really?) Yes, I know, it's your life at stake and you really shouldn't spare any expense, but there is reality to think about. I ride motorcycles. I wear a helmet. I wear a helmet that I can afford, not the "best" but it should do the job just find. I don't call a Hollywood rockstar plumber to fix a leaky pipe; you'll never be able to tell after it's fixed who did the work. I wish I could afford a Maserati, but a Ford is more in my budget and does the job of getting me around just as well. My surgeon came highly recommended by my cardiologist and is very experienced and highly regarded. The local hospital I went to may not be Mayo or Cleveland, but is very good. We know that it's a good thing to support local businesses and eat locally produced food. Why not patronize local doctors and hospitals if they can fulfill our needs? Like my car and plumber, I prefer a surgeon who is convenient, not too expensive, and does a competent, jouneyman job, day in and day out.

 

[Anya]

I hear ya Clay In fact Sunnybrook is my local hospital and the surgeon coincidentally performed OHS on my girlfriend a few years ago. She raved about him and when my Cardiologist referred me to him I was over the moon. I called the Cardiologist's office this a.m. to see if the Angiogram results had arrived from the hospital and of course they haven't. I'll be calling again on Monday and to make an appt. with him once he's reviewed the results. Then the heat will be on him to get this bloody ball rolling!

ManiSham I wish it was that easy, but here you can't just make an appt. with the surgeon. I can't even make an appt. with the cardiologist until after he's reviewed the Angiogram.