Darren Wettig - Heart Valve Journal

My Journal

31 days ago

i'm feeling uneasy right now about my situation after the weekend. I haven't been able to reach my surgeon's team to get clarification about a notification ...Read more

i'm feeling uneasy right now about my situation after the weekend. I haven't been able to reach my surgeon's team to get clarification about a notification I got over the weekend. It was to let me know that my surgery will be in a few weeks instead of what they told me as recently as 2 weeks ago when they said I would be able to have it until late summer/September.

The more concerning part is that it says the surgical plan has changed. They have me down for a Ross Procedure now instead of the valve sparing aortic root replacement that was discussed with me. Ross Procedure has never been mentioned. They were always planning to do either a Bentall Procedure, or if they could save the valve, the Valve Sparing Aortic Root Replacement. The valve sparing was the surgeons preferred option and he was 80-90% confident they could do it.

This may have been an error listing it as a Ross Procedure. Or they may have received new information that makes me ineligible for the valve sparing procedure. I don't know why else it would have been changed but I'm uneasy that such a major decision was made without consulting with me.

This is bringing up a lot of negative feelings from my last experience with this hospital. I had neurosurgery on my head in 1996 and it was a very unfortunate experience that had lasting negative consequences. I'm trying to not let this rule my anxiety but its hard.

John Cook I was bumped back 2 weeks because of someone else’s emergency surgery. I didn’t like it but under ... Read more

John Cook I was bumped back 2 weeks because of someone else’s emergency surgery. I didn’t like it but understood it.

You definitely sound like you need to have a phone call with the surgeon’s office about why they bumped you up and changed the procedure. If you recently had a CT-A or ECHO, they might have saw something that made the valve sparing operation not a good option and made them consider moving your surgery up.

Richard Munson Sounds like they are in charge of your health care, not you. Should be the other way around.

Susan Lynn Darren - Nothing will happen without your permission. But, if you're dissatisfied with your last ex ... Read more

Susan Lynn Darren - Nothing will happen without your permission. But, if you're dissatisfied with your last experience at this facility, why are you going back? Is that mandated by your healthcare in Canada?

J Alexander Lassally Switching the surgery type without your knowledge sounds super shady ! Get to the bottom of that and ... Read more

J Alexander Lassally Switching the surgery type without your knowledge sounds super shady ! Get to the bottom of that and only do what you think is best given your risk/benefit...

I find that some surgeons like to use patients for their own betterment -suggesting things THEY like and THEY do regardless of benefit risk or long term durability... It is up to you to be moral agent for yourself... especially if you had previous issues. Seek clarification !

Rose Madura I see a lot of red flags here. You should seek out a second opinion and you must be your own advocat ... Read more

Rose Madura I see a lot of red flags here. You should seek out a second opinion and you must be your own advocate. To send that information in a notice and over a weekend at that seems insensitive to me. Once of the best pieces of advice I received was that you must feel comfortable with your cardiologist and surgeon. I realize that health care in Canada is different but others on this site from Canada were able to take control over their situation. Hopefully, they will chime in here. Godspeed. Please keep us posted.

Richard Munson Sounds like an unknown beurocrat sticking their nose into your health care. We have our share down he ... Read more

Richard Munson Sounds like an unknown beurocrat sticking their nose into your health care. We have our share down here that want to run your life. No thanks.

Deena Z Woa. Seek clarification if your intended type of surgery has changed, without you being informed. ... Read more

Deena Z Woa. Seek clarification if your intended type of surgery has changed, without you being informed. Either way, lack of or incorrect communication is not a good sign. Can you get a second opinion?!!

Richard Munson Knock, knock. Hi this is uncle sam and i’m here to make your life better. Run, baby, run.

Robert Miller What I would do is
1) Go to the learning center on this website and study as much as possible.
Read more

Robert Miller What I would do is
1) Go to the learning center on this website and study as much as possible.
2) With this knowledge, go back to the surgeon and ask why there was a change. Dig in as much as you can from the knowledge you gained.
3) Go to a second surgeon and ask questions with all you learned from 1) and 2)

I think your number 1 priority is getting a second opinion but before doing so, do as much research as you can without delaying things too much. Write everything down on a piece of paper before you go for your second opinion. Make sure you leave space after each question you put down on the piece of paper so you can make notes. If you have a partner/friend/etc bring him/her along so they can write down notes.

Darren Wettig Thank you all for your comments. I really appreciate hearing this seems odd to someone else as I know my past makes me suspect and possibly overly-sensitive.

Unfortunately I've found out the surgeon's office is closed for vacation so it looks like I'll have to wait to find out if this was possibly sent in error.

Discovering the bicuspid aortic valve and that I had aortic root dilation was a surprise this year. I've spent the last couple of months understanding the Bentall and valve-sparing procedures and asking all my questions to get comfortable with it. This site has been a great resource in that process and I've now started to review the Ross material. I've also started the process to try and get a second opinion.

I haven't had another ECHO or CT since I met with the surgeon. I've been trying to think if there is anything new that might have resulted in this change but as far as I'm aware, the only new information is that I had an x-ray in preparation, which noted no changes from the pervious x-ray they had on file, and my family doctor completed the medical history.

Rose Madura Does Canadian healthcare have digital records? You need to get a second opinion while your surgeon' ... Read more

Rose Madura Does Canadian healthcare have digital records? You need to get a second opinion while your surgeon's office is out on vacation. If records are digitized, the new doctor can then answer your questions. Robert gives excellent advice on doing research. You have to be your own best advocate.