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I begin by expressing my appreciation for this forum – I have benefited enormously from all that I have read here (and I have read a LOT!) – and to have the opportunity to share my concerns with some very supportive and compassionate fellow travelers on the HCM road.
My cardiologist has suggested that I may have reached the time to consider a myectomy.
I am currently seeing Dr. Naidu in Long Island and I have a follow up consult with Dr. Sherrid who originally diagnosed me some 8 years ago. After some aggressive medical treatment that explored various dosages of metoprolol and norpace, and after reviewing my last echo, Dr. Naidu declared that he was not really seeing any benefit to this route and wanted me to talk to Dr. Dearani at Mayo. (I believe that something about the mid-ventricular location of my obstruction makes the question of surgery a bit of a challenge – not exactly sure why –doesn’t it always seem to go that you remember the important questions AFTER the doctor appointment – I’ll have a chance to pursue this with Sherrid…)
It is possible that things will be much clearer once the others weigh in – but for now I am wrestling with several aspects of this decision.
One is the subjective nature of the decision. Is the decision to have surgery or not based on objective criteria – on the numbers? Or is it based on my complaints about how much my condition is impacting my lifestyle?
Based on the numbers – I believe my echo shows a dramatic and significant obstruction - 2.4 cm. (“severe mid-ventricular obstruction, with ejection into apex as well as outflow tract…severely hypokinetic/akinetic”).
I read a lot of discussion about gradient. How is gradient measured – is that only after an angiogram? At one point I thought he threw out the number 36-40mmHG from an echo – is that my gradient? Not sure how that figures in. I have an ICD and it shows frequent SVT’s and an occasional VT but none of any significant duration. I have no problem with my lungs or mitral valve. He does seem to be concerned about the pooling of blood and the potential for a clot or aneurism but so far close attention has not seen evidence of either.
My understanding is that this is pretty borderline problematic by the numbers.
And then they ask abut my complaints - - and I find this frustrating!
I am not sure whether to complain or not – is the glass half full or half empty?
If you want me to complain – I can say that the slightest exertion causes me to be short of breath. A flight of stairs, a brisk walk and I am noticeably puffing. I worked with a trainer the other day – and it was very frustrating. Recently my grandson was crying in his crib - -I ran upstairs – by the time I got there and lifted him out – I had to sit down – he wanted to be held standing up and it took me a few moments to recover. I had a strange episode recently on a flight to LA where I felt my breathing was a bit less than effective – has anyone felt this at 30,000 ft in a plane? I’ve had a few occasions of light-headedness – but never where I had to sit down.
But as symptoms go – these are fairly mild no?
I have no chest pains - -in fact I never feel anything – when the ICD tech speeds up my heart he asks “You don’t feel that?” When they review the number of SVT’s I have they ask – “You never feel anything?” And the answer is No!
And if you don’t want me to complain I could say – I am 63 years old! A lot of people 63 years old huff and puff going up the stairs. So I used to ski and play tennis and bike – I used to do a lot of things I no longer do. I am a busy professional with a long day and I am keeping up with a very busy schedule.
And the fact that I am on 4- 500 mg of Norpace and 150 mg of metoprolol – each day – doesn’t that account for some of my limitations?
So depending on my mood – things are either not so bad or could be a lot better – but is that how you determine surgery?
Is how I present my case determinative of whether I go the surgery route - -or is my narrative secondary to the objective condition the trained eyes of the doctor will see?
And then there is the question of now or later.
Given the fact that I have obstructive HCM and medication is not being helpful – is surgery inevitable and now it is merely a question of now or later? Is my condition - -always one that deteriorates?
The “put off surgery as long as possible” philosophy argues that each week sees new techniques and new developments and later is always better than earlier.
The “get it done and behind you” philosophy says – you are never younger and healthier than you are right now – take advantage of that and have the surgery and get on with your life.
And finally (I hope this has not been too rambling – thank you for your indulgence if you are still reading this…) I am also wrestling with what Dr. Naidu’s caution when he said – that his concern is not with the danger of the surgery – it carries only a 1% risk of death. His concern is the risk that I will go through all of this and not see much benefit – the risk of it not working is much more significant.
I watched the video of Dr. Swistel doing a myectomy on the St. Luke’s web site – it is pretty sobering. This is a big deal – even those who have had minimal complications have given voice to that fact on this forum – and let’s not even discuss the testimony of those of you who have had less than optimal experiences.
So I am not at all sure what to wish for when I hear from Sherrid and Dearani.
I guess I am on a path that has a life of its own – and things will clarify over the next few weeks. Thanks for listening and I welcome any and all advice.
My cardiologist has suggested that I may have reached the time to consider a myectomy.
I am currently seeing Dr. Naidu in Long Island and I have a follow up consult with Dr. Sherrid who originally diagnosed me some 8 years ago. After some aggressive medical treatment that explored various dosages of metoprolol and norpace, and after reviewing my last echo, Dr. Naidu declared that he was not really seeing any benefit to this route and wanted me to talk to Dr. Dearani at Mayo. (I believe that something about the mid-ventricular location of my obstruction makes the question of surgery a bit of a challenge – not exactly sure why –doesn’t it always seem to go that you remember the important questions AFTER the doctor appointment – I’ll have a chance to pursue this with Sherrid…)
It is possible that things will be much clearer once the others weigh in – but for now I am wrestling with several aspects of this decision.
One is the subjective nature of the decision. Is the decision to have surgery or not based on objective criteria – on the numbers? Or is it based on my complaints about how much my condition is impacting my lifestyle?
Based on the numbers – I believe my echo shows a dramatic and significant obstruction - 2.4 cm. (“severe mid-ventricular obstruction, with ejection into apex as well as outflow tract…severely hypokinetic/akinetic”).
I read a lot of discussion about gradient. How is gradient measured – is that only after an angiogram? At one point I thought he threw out the number 36-40mmHG from an echo – is that my gradient? Not sure how that figures in. I have an ICD and it shows frequent SVT’s and an occasional VT but none of any significant duration. I have no problem with my lungs or mitral valve. He does seem to be concerned about the pooling of blood and the potential for a clot or aneurism but so far close attention has not seen evidence of either.
My understanding is that this is pretty borderline problematic by the numbers.
And then they ask abut my complaints - - and I find this frustrating!
I am not sure whether to complain or not – is the glass half full or half empty?
If you want me to complain – I can say that the slightest exertion causes me to be short of breath. A flight of stairs, a brisk walk and I am noticeably puffing. I worked with a trainer the other day – and it was very frustrating. Recently my grandson was crying in his crib - -I ran upstairs – by the time I got there and lifted him out – I had to sit down – he wanted to be held standing up and it took me a few moments to recover. I had a strange episode recently on a flight to LA where I felt my breathing was a bit less than effective – has anyone felt this at 30,000 ft in a plane? I’ve had a few occasions of light-headedness – but never where I had to sit down.
But as symptoms go – these are fairly mild no?
I have no chest pains - -in fact I never feel anything – when the ICD tech speeds up my heart he asks “You don’t feel that?” When they review the number of SVT’s I have they ask – “You never feel anything?” And the answer is No!
And if you don’t want me to complain I could say – I am 63 years old! A lot of people 63 years old huff and puff going up the stairs. So I used to ski and play tennis and bike – I used to do a lot of things I no longer do. I am a busy professional with a long day and I am keeping up with a very busy schedule.
And the fact that I am on 4- 500 mg of Norpace and 150 mg of metoprolol – each day – doesn’t that account for some of my limitations?
So depending on my mood – things are either not so bad or could be a lot better – but is that how you determine surgery?
Is how I present my case determinative of whether I go the surgery route - -or is my narrative secondary to the objective condition the trained eyes of the doctor will see?
And then there is the question of now or later.
Given the fact that I have obstructive HCM and medication is not being helpful – is surgery inevitable and now it is merely a question of now or later? Is my condition - -always one that deteriorates?
The “put off surgery as long as possible” philosophy argues that each week sees new techniques and new developments and later is always better than earlier.
The “get it done and behind you” philosophy says – you are never younger and healthier than you are right now – take advantage of that and have the surgery and get on with your life.
And finally (I hope this has not been too rambling – thank you for your indulgence if you are still reading this…) I am also wrestling with what Dr. Naidu’s caution when he said – that his concern is not with the danger of the surgery – it carries only a 1% risk of death. His concern is the risk that I will go through all of this and not see much benefit – the risk of it not working is much more significant.
I watched the video of Dr. Swistel doing a myectomy on the St. Luke’s web site – it is pretty sobering. This is a big deal – even those who have had minimal complications have given voice to that fact on this forum – and let’s not even discuss the testimony of those of you who have had less than optimal experiences.
So I am not at all sure what to wish for when I hear from Sherrid and Dearani.
I guess I am on a path that has a life of its own – and things will clarify over the next few weeks. Thanks for listening and I welcome any and all advice.
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