I can barely breathe. Second OHS.

[bright&shiny]

I was at Mass General yesterday. After several years of another doctor there telling me I’m fine and generally being dismissive, I met with a kind, world expert surgeon who said I need another open heart surgery - before the end of the year. I am beyond upset and angry, and afraid. All of the things one wouldn’t want individually, much less all together at the same time.

My first surgery was brutal - and with many complications and 10 months of recovery before cardiac rehab was even an option. And I was in my mid 30’s….. That first surgery is also the likely the cause of this newer, and more dangerous problem. I’m having a hard time catching my breath (figuratively - unless I’m in a crying jag). Has anyone else had two OHS? How did it go? How did you handle the anxiety?

Thanks for listening.

 

[bludiva]

I can't imagine the frustration you're feeling. Wishing you good care from your doctors and a swift recovery from the procedure. I'm so sorry - hopefully others will come along soon with more incisive advice.

 

[MissGotRocks]

I am sorry to hear this and can certainly understand your anxiety. Did this new doctor tell you what to expect in terms of what the surgery is, what to expect afterward, rehab? As is often the case, it is the unknown that makes is so much scarier. I certainly hope that the second doesn’t mirror the first and hopefully the doctor can put your mind at ease about the recovery process.

 

[Ally T]

Big hugs to you. I too would be an anxious mess. I cannot offer any advice on the surgery, but I will say that you have to have faith in these amazing surgeons - you will be in good hands.

 

[bright&shiny]

I can't imagine the frustration you're feeling. Wishing you good care from your doctors and a swift recovery from the procedure. I'm so sorry - hopefully others will come along soon with more incisive advice.

Thank you so much for the good thoughts. This is such a wonderful community!

 

[bright&shiny]

I am sorry to hear this and can certainly understand your anxiety. Did this new doctor tell you what to expect in terms of what the surgery is, what to expect afterward, rehab? As is often the case, it is the unknown that makes is so much scarier. I certainly hope that the second doesn’t mirror the first and hopefully the doctor can put your mind at ease about the recovery process.

Thank you - it helps to vent a bit. The surgeon (new doctor) was incredibly informative about how it was caused, how it’s been progressing, despite the other doctors claims it wasn’t, and how he hopes to fix it. It a pseudo aneurysm of the ascending aorta, held together by only scar tissue. If it bursts - it’s about a 30 second story….. so that is scary I and of itself.

Another test is required to determine show he can proceed, but he’s confident he can find a solution. Recovery is as usual - several months. But last time that was the same prediction and it was nearly 10 months. And I was younger and in excellent shape.

To top it off, I have a needle phobia. This is all like the stuff of nightmares. I am trying to be positive in my thoughts and expectations, but right now it’s a new scary mess.

 

[bright&shiny]

Big hugs to you. I too would be an anxious mess. I cannot offer any advice on the surgery, but I will say that you have to have faith in these amazing surgeons - you will be in good hands.

Thank you so much. I’m trying to have faith. The new surgeon is amazing. Duke Cameron. Used to be from John’s Hopkins. He’s been companionate and informative so far

 

[canuk-gal]

HI:

Of course you are nervous. It sounds like you are in great hands. Healing vibes across the miles.....

ETA: isn't @allycat0303 a CV surgeon? Maybe she can weigh in.

kind regards, Sharon

 

[missy]

I am so sorry you are going through this @bright&shiny.
I am sending you so many well wishes and best of luck for a successful surgery and full recovery.
Gentle hugs.

 

[Austina]

I’m so sorry @bright&shiny, I can‘t even begin to imagine how you’re feeling. It’s natural to feel overwhelmed and afraid when given such news. The good news is that your new Doctor is on the ball, and is listening to your concerns and you feel confident in his abilities.

As @missy wisely says, one minute at a time, one hour, one day, one week, you’ll get through this.

 

[monarch64]

Can they prescribe something for your anxiety? Because if ever there was a time for meds it would most certainly be for this. Sending hugs and positive thoughts your way

 

[SparklieBug]

That's a big load on your plate, @bright&shiny! No wonder you're stressed, worried, upset, etc.

I have an acquaintance that had an emergency OHS, then unexpectedly had to have a second OHS three years later (which was earlier this year). She was also stressed to the max, and worried for similar reasons as you (long recovery time, etc.). She did well with the second surgery, and although she was in hospital during COVID times, all turned out well.

She was super anxious and did some "tapping" on meridian points on the body to calm her nervous system, and to help to ease fears/anxiety. It worked wonders for her! If you're interested, you could check out www.thetappingsolution.com. I'm not affiliated in any way—this is the method she uses.

Wishing you all the very best!

 

[seaurchin]

So sorry. But it's so wonderful that you reached someone who really knew what they are doing.

Hopefully, you sail through this and it's soon behind you.

I haven't had anything similar so far. But whenever I have to do something I dread, sometimes I find myself just sort of going into mechanical mode and taking the steps I need to take, like my feelings about it don't make any difference as far as what I'm going to do, so they shut off or something. If that even makes sense and can be done deliberately. So fwiw. Best wishes.

 

[seaurchin]

ETA: This probably calls for some get well bling.

 

[MissGotRocks]

Thank you - it helps to vent a bit. The surgeon (new doctor) was incredibly informative about how it was caused, how it’s been progressing, despite the other doctors claims it wasn’t, and how he hopes to fix it. It a pseudo aneurysm of the ascending aorta, held together by only scar tissue. If it bursts - it’s about a 30 second story….. so that is scary I and of itself.

Another test is required to determine show he can proceed, but he’s confident he can find a solution. Recovery is as usual - several months. But last time that was the same prediction and it was nearly 10 months. And I was younger and in excellent shape.

To top it off, I have a needle phobia. This is all like the stuff of nightmares. I am trying to be positive in my thoughts and expectations, but right now it’s a new scary mess.

He sounds like a very capable surgeon and unlike the others, located the issue. I certainly understand your nervousness - we would all feel the same way I’m sure. Just one day at a time, one step at a time and tell yourself you will finally be rid of the problem. I hope your recuperation goes much easier this time around. I too would talk to him about your anxiety to see if he could give you something to ease it a bit.

 

[Lookinagain]

I'm so sorry that you are going through this. Was the first doctor/surgery at Mass Gen? I only ask because it is a top hospital with the finest doctors so I'd be surprised that the first doctor missed the mark. But it does sound like you now have the right doctor and I know MGH is tops in the field for heart issues so you are probably in the best hands available. Best of luck.

 

[Slickk]

I have no experience with OHS to draw upon, but I’m sending boatloads of get-well dust for you. It’s reassuring that this Dr seems very competent and confident he has the solution. Soon this will be behind you.
I second the suggestion to ask for something to help with the anxiety. I had major surgery a few years ago and it really helped calm me, especially the couple days prior.
Much luck over the miles.

 

[LilAlex]

Has anyone else had two OHS? How did it go?

A lot depends on the reason for the surgery, what needs to be done, and how healthy you are otherwise.

The pronouncement that you "need open-heart surgery" is almost never a bedside diagnosis. This new doctor reviewed your studies, presumably, and then came to a different conclusion than your other doctor(s).

EDIT: you added some details above about the cause that I did not see at first. Your first experience was abnormally bad, imo, and I would not expect that again. Is this amenable to a TAVR or "closed" procedure? Would not be the preferred choice if you are healthy with a lot of years ahead of you but maybe worth asking. Anyone at Mass General Brigham would be able to answer that.

I am not a Cardiologist or CT surgeon.

 

[Lookinagain]

I don't understand what new insight this doctor could provide

Maybe the last doctor was just not a great doctor. And the new one is better. There are differences, but I'm sure you know that.

 

[bright&shiny]

@canuk-gal - thank you for the encouraging words! You are always so kind!

 

[bright&shiny]

Big hugs to you. I too would be an anxious mess. I cannot offer any advice on the surgery, but I will say that you have to have faith in these amazing surgeons - you will be in good hands.

Thank you! I struggle with faith in general, but I’m really trying to have faith in this surgeon. At least he’s kind and interested!

 

[bright&shiny]

@missy, you are so kind! Thank you

 

[bright&shiny]

I’m so sorry @bright&shiny, I can‘t even begin to imagine how you’re feeling. It’s natural to feel overwhelmed and afraid when given such news. The good news is that your new Doctor is on the ball, and is listening to your concerns and you feel confident in his abilities.

As @missy wisely says, one minute at a time, one hour, one day, one week, you’ll get through this.

@Austina, Thank you for your empathy and optimism. Those are wise words, indeed from @missy !

 

[bright&shiny]

Can they prescribe something for your anxiety? Because if ever there was a time for meds it would most certainly be for this. Sending hugs and positive thoughts your way

Thankfully, they can! My GP has been prescribing me a med to allow me to complete some basic medical work this past year. This phobia is really a problem. I spoke with her today and she said its a good idea to keep taking, in moderation, as I need it during this tough time. It’s lessened my crying jags and feeling of helplessness, so that‘s a good thing. Thank you for your positive thoughts and virtual hugs!!!!!!

 

[bright&shiny]

That's a big load on your plate, @bright&shiny! No wonder you're stressed, worried, upset, etc.

I have an acquaintance that had an emergency OHS, then unexpectedly had to have a second OHS three years later (which was earlier this year). She was also stressed to the max, and worried for similar reasons as you (long recovery time, etc.). She did well with the second surgery, and although she was in hospital during COVID times, all turned out well.

She was super anxious and did some "tapping" on meridian points on the body to calm her nervous system, and to help to ease fears/anxiety. It worked wonders for her! If you're interested, you could check out www.thetappingsolution.com. I'm not affiliated in any way—this is the method she uses.

Wishing you all the very best!

It’s so good to hear someone‘s good experience! Thank you for that. I”m going to check out the meridian point taps tongiht. Sleep still feels far away. What a gift - so thank you again!!!!

 

[bright&shiny]

So sorry. But it's so wonderful that you reached someone who really knew what they are doing.

Hopefully, you sail through this and it's soon behind you.

I haven't had anything similar so far. But whenever I have to do something I dread, sometimes I find myself just sort of going into mechanical mode and taking the steps I need to take, like my feelings about it don't make any difference as far as what I'm going to do, so they shut off or something. If that even makes sense and can be done deliberately. So fwiw. Best wishes.

@seaurchin, this is wonderful advice! I’m going to give it a try. Anything is better than what I”m doing now! Thank you - another beautiful gift.

PS - I stopped into a local place, nothing that interested me. I’m hoping something pops up on pre-loved because I know it won’t fix anything, but it sure might help me feel a little better to have some bling…. is that wrong?

 

[bright&shiny]

He sounds like a very capable surgeon and unlike the others, located the issue. I certainly understand your nervousness - we would all feel the same way I’m sure. Just one day at a time, one step at a time and tell yourself you will finally be rid of the problem. I hope your recuperation goes much easier this time around. I too would talk to him about your anxiety to see if he could give you something to ease it a bit.

Such good advice. I’ll be doing all of this!

 

[bright&shiny]

I'm so sorry that you are going through this. Was the first doctor/surgery at Mass Gen? I only ask because it is a top hospital with the finest doctors so I'd be surprised that the first doctor missed the mark. But it does sound like you now have the right doctor and I know MGH is tops in the field for heart issues so you are probably in the best hands available. Best of luck.

@Lookinagain The first surgeon was at Brigham and Womens (also in Boston for those unfamiliar). Unfortunately, he’s now at Mt. Saini in NY - a huge star because he invented a medical device and is now probably a gagillionaire. The other doctor, who said I was fine and everything looked unchanged to his eye, is also at Mass Gen. I don’t want to see him or anyone on his team ever again. They were rude, condescending, and belittling. That won’t help me recover (the first surgeon was similar). Unfortutnately, while Mass Gen has many great doctors, not all are good providers, if that makes sense. We are also planning to get a virtual second opinion from Cleveland Clinic, if time allows. Thanks for your good wishes!

 

[bright&shiny]

I have no experience with OHS to draw upon, but I’m sending boatloads of get-well dust for you. It’s reassuring that this Dr seems very competent and confident he has the solution. Soon this will be behind you.
I second the suggestion to ask for something to help with the anxiety. I had major surgery a few years ago and it really helped calm me, especially the couple days prior.
Much luck over the miles.

This is such good advice. I’m going to be taking an occasional med more regularly now, so I hope that helps. Are you comfortable sharing what you were taking?

 

[bright&shiny]

A lot depends on the reason for the surgery, what needs to be done, and how healthy you are otherwise.

The pronouncement that you "need open-heart surgery" is almost never a bedside diagnosis. This new doctor reviewed your studies, presumably, and then came to a different conclusion than your other doctor(s).

EDIT: you added some details above about the cause that I did not see at first. Your first experience was abnormally bad, imo, and I would not expect that again. Is this amenable to a TAVR or "closed" procedure? Would not be the preferred choice if you are healthy with a lot of years ahead of you but maybe worth asking. Anyone at Mass General Brigham would be able to answer that.

I am not a Cardiologist or CT surgeon.

What a thoughtful response. Thank you!

Whew, the first experience was truly rotten. Added to the strokes I had before the surgery (that’s how my ASD was discovered) With that said, the doctor who saw me a month ago has been following me since the pseudoaneurysm was discovered (although they originally had a lot of confusion about what it was - it has only recently been accurately identified). He said it looked exactly the same. However, the surgeon brought me a printout and even to my untrained eye, its radically different. The radiology reports have also said it is increasing. The Dr. took issue with that and told me to ignore everyone but him because he’s the expert. 3 days later they referred me to a surgeon. It feels like more than a simple matter of different conclusions. Regardless, I don’t want to ascribe blame, but I am so frustrated by the attitude…

The surgeon, by contrast, was kindness and humility itself. He described every aspect of my condition, including what caused it, why the correct dx is pseudo aneurysm, showed me pics, and then described the risks and what is possible, what might be possible, and what isn’t likely to work.

Because of a few factors, most prominently a conus branch inconveniently located right alongside the pseudo aneurysm, it is not amenable to a TAVR. I will be having a CT to give him more detail, but he expects it will need to be bypased . If all goes well, I should have many years ahead of me and am fairly healthy otherwise.

Thanks again for your knowledgeable response! I am grateful!!!!