I can barely breathe. Second OHS.

[bright&shiny]

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.

I do know that, but this is the perfect time to be reminded. Thank you!!!!!

 

[LilAlex]

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.

Sounds like you're in excellent hands and have a good understanding of the anatomy, the procedure, and the alternatives. That is always a great start! Having (appropriate) confidence in your surgeon and the rest of your "team" is also an effective way to minimize anxiety.

 

[Slickk]

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?

Yes. I used Ativan. Here’s a screen cap for you. Wishing you all the best

 

[yennyfire]

You’ve received great advice already, I just wanted to send hugs….

 

[Diamond Girl 21]

So sorry you are going through this. Sending you hugs and healing vibes.

 

[bright&shiny]

Sounds like you're in excellent hands and have a good understanding of the anatomy, the procedure, and the alternatives. That is always a great start! Having (appropriate) confidence in your surgeon and the rest of your "team" is also an effective way to minimize anxiety.

So well said - especially “appropriate confidence”. Thank you for your kind response.

 

[bright&shiny]

Yes. I used Ativan. Here’s a screen cap for you. Wishing you all the best

Thank you so much! Unfortunately, I’m one of the people that have an adverse reaction to Ativan. It make me more anxious….of course, that would be me. I’ve been trying clorazepam and that seems to be working a bit. At least I don’t go the other way with it

 

[bright&shiny]

You’ve received great advice already, I just wanted to send hugs….

I’m so grateful!

 

[bright&shiny]

So sorry you are going through this. Sending you hugs and healing vibes.

Thank you so very much for your kind thoughts. Virtual hugs are wonderful!

 

[rainydaze]

This is a stressful and scary thing for you to be going through. My stomach is in knots reading your posts.

You have so many feelings to sort through, not just with what you are facing now but with what you already faced and how it contributed to where you are now, and with the doctor(s) who let you down. I feel relieved that you have seen a doctor who was able to recognize this and knows a path forward for you... my goodness just writing that made my heart clench.

I feel like most of what comes into my mind to write are platitudes, which fall short. This is a big thing, and I am glad you reached out to share and find support. I hope you find yourself surrounded with support and love in IRL as well. I will be thinking of you!

 

[bright&shiny]

This is a stressful and scary thing for you to be going through. My stomach is in knots reading your posts.

You have so many feelings to sort through, not just with what you are facing now but with what you already faced and how it contributed to where you are now, and with the doctor(s) who let you down. I feel relieved that you have seen a doctor who was able to recognize this and knows a path forward for you... my goodness just writing that made my heart clench.

I feel like most of what comes into my mind to write are platitudes, which fall short. This is a big thing, and I am glad you reached out to share and find support. I hope you find yourself surrounded with support and love in IRL as well. I will be thinking of you!

What a kind and thoughtful post. Thank you. I was worried about reaching out - because it is virtual and I didn’t want to burden anyone. But I’ve already got a treasure in everyone’s responses. And I can come back and read them again and again.

IRL, my support is loving but not local. The local folks haven’t been supportive since DH and I were married, and that will likely remain the same. So I’m working on shoring up my real life network with more folks who are near me. Also working on getting professional support. I still can’t believe this is happening. After the last round, I swore I’d die before I had another surgery of any kind - and I’ve had 4 since (not heart related). So, clearly that’s not how it works .

 

[mrs-b]

@bright&shiny -

Is there anything I can do for you? I live in the Boston area, spend more time at Mass Gen than I care to admit, and was a psychologist for many years. If you need a listening ear, someone to come to an appt with you and hold your hand, or even just hold your handbag - I'd be happy to. Happy to meet up for a drink and talk it all through if you think that would help. My medical experience with serious illness is broad. Very broad. So I get the anxiety and have had that - with a good dose of PTSD - particularly after one specific medical experience.

My best advice for now - get a second opinion. I had one doctor who inserted a cardiac stent 2 years ago and I've had problems ever since. I went in as an emergency admission - never saw him before that and never saw him after. The whole thing was a nightmare. My cardiac team is all through BIDM, but my spine team is at Mass Gen. DH's rheumatology team is a combination of both. So we bounce around between both hospital systems. I've had 2 cardiac surgeons at BIDM - Mark Wyers and Jonathan Waks - both superlative and I'd recommend them heartily.

Anyway, pls don't be afraid to reach out if you need some support; half of Pricescope has my contact details and if a chat on the phone with someone else who has been through the wringer would help - I'm your girl.

In the meantime, you're on my prayer list. ox

 

[Mrs_Strizzle]

@bright & shiny,

I am so sorry you are going through this, but so thankful your new team has discovered the issue!

If I can add my non-physician opinion (though I worked with vascular surgeons and have seen countless pseudonyms in my 20 year profession)-

I wouldn't think you can compare your previous recovery to this one. Repairing an ASD is much more complicated. Healing from such a repair is compromised with every heartbeat, literally. While repairing the ascending Aorta is vital, it does not have the motion that the heart does, and hopefully the healing easier and less stressful. Without obviously knowing all the details, I hope my words offer some comfort to your thought process going forward.

I also want to lovingly suggest meditation. It has been clinically proven to lower cortisol levels, which understandably must be high with this stressful situation. Just a few minutes a day may do wonders for your mental and physical well-being.

I hope my words come across in the loving way I intend. Hugs and prayers sent your way.

 

[mustangchi]

I'm so sorry, I have only had one OHS when I was 34 which was over 10 years ago. Other than that I've only had cardiac device battery replacements. I can imagine I'd be pretty stressed if I were facing another one. Hoping for comfort for you going forward.

 

[Daisys and Diamonds]

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.

you know when my other half first started having heart problems 20 years ago our GP gave us hope and calmness by pointing out how heart medicine is always progressing, always improving

im sad that you got fobbed off by the other doctor but this one sounds a much better doctor
it does seem to be quite nornal to experience things like depression and anxiety with heart problems, perhaps this doctor can point you in the right direction to help alleviate some of this

have you tried meditation ?

 

[bright&shiny]

@bright&shiny -

Is there anything I can do for you? I live in the Boston area, spend more time at Mass Gen than I care to admit, and was a psychologist for many years. If you need a listening ear, someone to come to an appt with you and hold your hand, or even just hold your handbag - I'd be happy to. Happy to meet up for a drink and talk it all through if you think that would help. My medical experience with serious illness is broad. Very broad. So I get the anxiety and have had that - with a good dose of PTSD - particularly after one specific medical experience.

My best advice for now - get a second opinion. I had one doctor who inserted a cardiac stent 2 years ago and I've had problems ever since. I went in as an emergency admission - never saw him before that and never saw him after. The whole thing was a nightmare. My cardiac team is all through BIDM, but my spine team is at Mass Gen. DH's rheumatology team is a combination of both. So we bounce around between both hospital systems. I've had 2 cardiac surgeons at BIDM - Mark Wyers and Jonathan Waks - both superlative and I'd recommend them heartily.

Anyway, pls don't be afraid to reach out if you need some support; half of Pricescope has my contact details and if a chat on the phone with someone else who has been through the wringer would help - I'm your girl.

In the meantime, you're on my prayer list. ox

@mrs-b, thank you for your kind and generious response. I know you have been going through your own trials, so I especially appreciate your kind thoughts and offer to meet and talk. I have your contact info because I was lucky enough to purchase a beautiful step cut peridot a few years ago .

I'm sorry for the delay in response - apparently, denial can't make things easier.... I've been so hoping it would just go away. But today is another day of expecting phone calls that may or may not come. So stressful. My husband called the care team today because I just can't.

Cleveland Clinic called me back for the virtual second opinion process. The person I spoke to was very nice and understanding. We will probably get this underway this week. I'll reach out - a chat might just help. I am grateful for the offer!

 

[bright&shiny]

@bright & shiny,

I am so sorry you are going through this, but so thankful your new team has discovered the issue!

If I can add my non-physician opinion (though I worked with vascular surgeons and have seen countless pseudonyms in my 20 year profession)-

I wouldn't think you can compare your previous recovery to this one. Repairing an ASD is much more complicated. Healing from such a repair is compromised with every heartbeat, literally. While repairing the ascending Aorta is vital, it does not have the motion that the heart does, and hopefully the healing easier and less stressful. Without obviously knowing all the details, I hope my words offer some comfort to your thought process going forward.

I also want to lovingly suggest meditation. It has been clinically proven to lower cortisol levels, which understandably must be high with this stressful situation. Just a few minutes a day may do wonders for your mental and physical well-being.

I hope my words come across in the loving way I intend. Hugs and prayers sent your way.

@Mrs_Strizzle , I am sorry for the delay in response to you - I've just been overwhelmed and frankly, in denial - hoping distraction could mean a change in the dx. But I'm back to reality and wanted to say your words helped me immensely. I shared them with my husband - and we both have taken great comfort in the idea that this recovery could be different than the first. I have been meditating and working on lowering my anxiety/stress and it helps to a certain extent, so I appreciate these words, as well.

Thank you for taking the time to respond. It was so helpful!

 

[bright&shiny]

I'm so sorry, I have only had one OHS when I was 34 which was over 10 years ago. Other than that I've only had cardiac device battery replacements. I can imagine I'd be pretty stressed if I were facing another one. Hoping for comfort for you going forward.

@mustangchi, I was 33 for my first (ASD repair), and it was a long time ago. It's such a surprise to find this complication, then have it's diagnosis change and then the sudden prognosis - it seems like we have more science and testing that it shouldn't have been such a surprise. Thank you for your kind words - they really do make a difference!

 

[bright&shiny]

you know when my other half first started having heart problems 20 years ago our GP gave us hope and calmness by pointing out how heart medicine is always progressing, always improving

im sad that you got fobbed off by the other doctor but this one sounds a much better doctor
it does seem to be quite nornal to experience things like depression and anxiety with heart problems, perhaps this doctor can point you in the right direction to help alleviate some of this

have you tried meditation ?

I'm sorry to hear your other half also has heart troubles. Your GP is correct, medicine is alway progressing - and that's fantastic. The concurrence of depression and anxiety with heart/medical problems is so prevalent, it would seem that finding a way to help patient's deal with it would be more common place. Perhaps our emerging system of super specialists makes this more difficult....

I am using meditation and a few other anxiety reducing techniques. They are helping here and there, but I'm not able to maintain a consistently low enough level to function as I'd like (and need to). But I'm working on it - I'll be trying a technique called EMDR. Hopefully that puts a dent in this. So will clarity. Waiting is hard.

Thank you again - your kind words help. Truly.

 

[mustangchi]

@mustangchi, I was 33 for my first (ASD repair), and it was a long time ago. It's such a surprise to find this complication, then have it's diagnosis change and then the sudden prognosis - it seems like we have more science and testing that it shouldn't have been such a surprise. Thank you for your kind words - they really do make a difference!

I see that you mentioned Cleveland Clinic for a second opinion, my OHS was done at a national center (not CC). When you get to CC you may find yourself comforted by the difference in care there, I know I did with where I went for second opinion and surgery.

 

[Demon]

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.

That has to be scary, and I hope for the best for you!

 

[bright&shiny]

I see that you mentioned Cleveland Clinic for a second opinion, my OHS was done at a national center (not CC). When you get to CC you may find yourself comforted by the difference in care there, I know I did with where I went for second opinion and surgery.

At the moment, we are doing a virtual second opinion, so we won't get a chance to experience the facility first hand, but we will have meetings and a treatment plan at the end, and if Mass Gen can't get things lined up, hopefully we get enough of a 'feel' of CC to determine if they are a good second option. The other we will consider if there is a tie between MGH and CC is Mayo. I feel fortunate to have options - but frustrated at how difficult communication and planning can be. Medicine is tough right now - and being a patient is even more difficult.

 

[Daisys and Diamonds]

I'm sorry to hear your other half also has heart troubles. Your GP is correct, medicine is alway progressing - and that's fantastic. The concurrence of depression and anxiety with heart/medical problems is so prevalent, it would seem that finding a way to help patient's deal with it would be more common place. Perhaps our emerging system of super specialists makes this more difficult....

I am using meditation and a few other anxiety reducing techniques. They are helping here and there, but I'm not able to maintain a consistently low enough level to function as I'd like (and need to). But I'm working on it - I'll be trying a technique called EMDR. Hopefully that puts a dent in this. So will clarity. Waiting is hard.

Thank you again - your kind words help. Truly.

a debts a good start
happier times await

 

[bright&shiny]

Update & Thank you.

I just want to say a huge thank you for all your kinds words. It’s more helpful than you can imagine!

Mass General is still at a standstill nearly a month later. They called Friday to let me know I wasn’t forgotten.

Tomorrow I have my first second opinion at Beth Israel where we hope to learn more. I also get to meet a kind and generous PS legend. So much to look forward to tomorrow!

I started the Cleveland Clinic’s Virtual second opinion process. They already can see my most recent (and relevant) written records and are awaiting the imaging CDs they have requested during the intake process.

So, while my primitive and protective brain would like this all to disappear, I’ve still managed to move the ball forward a bit.

Thanks again for all your comments and observations. It helps so very much. <3

 

[mrs-b]

Update & Thank you.

I just want to say a huge thank you for all your kinds words. It’s more helpful than you can imagine!

Mass General is still at a standstill nearly a month later. They called Friday to let me know I wasn’t forgotten.

Tomorrow I have my first second opinion at Beth Israel where we hope to learn more. I also get to meet a kind and generous PS legend. So much to look forward to tomorrow!

I started the Cleveland Clinic’s Virtual second opinion process. They already can see my most recent (and relevant) written records and are awaiting the imaging CDs they have requested during the intake process.

So, while my primitive and protective brain would like this all to disappear, I’ve still managed to move the ball forward a bit.

Thanks again for all your comments and observations. It helps so very much. <3

I wish PS had a plain <3 emoji. If it did, I'd send you one. Hang in there, @bright&shiny - you are all kinds of backbone!

 

[lambskin]

@bright&shiny -

Is there anything I can do for you? I live in the Boston area, spend more time at Mass Gen than I care to admit, and was a psychologist for many years. If you need a listening ear, someone to come to an appt with you and hold your hand, or even just hold your handbag - I'd be happy to. Happy to meet up for a drink and talk it all through if you think that would help. My medical experience with serious illness is broad. Very broad. So I get the anxiety and have had that - with a good dose of PTSD - particularly after one specific medical experience.

My best advice for now - get a second opinion. I had one doctor who inserted a cardiac stent 2 years ago and I've had problems ever since. I went in as an emergency admission - never saw him before that and never saw him after. The whole thing was a nightmare. My cardiac team is all through BIDM, but my spine team is at Mass Gen. DH's rheumatology team is a combination of both. So we bounce around between both hospital systems. I've had 2 cardiac surgeons at BIDM - Mark Wyers and Jonathan Waks - both superlative and I'd recommend them heartily.

Anyway, pls don't be afraid to reach out if you need some support; half of Pricescope has my contact details and if a chat on the phone with someone else who has been through the wringer would help - I'm your girl.

In the meantime, you're on my prayer list. ox

You are awesome!

 

[Bron357]

Sending lots of hugs.
what I find that helps is writing down lots of questions to ask the doctor and understanding the procedure.
Do you know the reason why your last surgery had such a long recovery time? Is that the normal recovery time?
Will this surgery be similar in recovery time? What steps or situations will improve your recovery time?
Explain you have severe anxiety. This is normal. Ask what medications or other therapy can help (maybe medication and therapy). How can your needle phobia be handled? Can numbing gels be used? Can not watching help?
You are young and otherwise in great shape. You sound like your have a kind, caring and experienced surgeon. Decide if you will feel better knowing anything and everything about the procedure or just the basic outline. Some people prefer not to know everything, and that’s ok.
Express your feelings at all times so medical staff can be aware if you are struggling. No one is a mind reader. People will want to help you so just make sure you ask.
Youve got this.
Start planning your recovery bling, you will deserving something special.

 

[MamaBee]

I have nothing inspiring or helpful to say @bright&shiny. I just want you to know I’m thinking of you and wishing everything goes well...I wish I could give you a hug..

 

[missy]

Sending you gentle hugs and bucketloads of healing vibes. Keeping good thoughts for you

 

[bright&shiny]

I have nothing inspiring or helpful to say @bright&shiny. I just want you to know I’m thinking of you and wishing everything goes well...I wish I could give you a hug..

That helps more than you know, @MamaBee. Thank you!