1. < Hypertrophic Cardiomyopathy (HCM)
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Not Sure How To Deal With Might Needing A Heart Transplant

Posted by Dianna @holly1275, Oct 25 6:12am

It's been a long hard and painful journey.
What started out as on Septical Myectomy, and less than two years having a Redo.
Second Septical Myectomy Redo, and then having so much trouble upon exertion, finding out there is a Apical Anyurysm, and a Large PFO Shunt Right to left.
Having trouble breathing heart just goes up and then goes down and extreme fatique I just want to sleep.
I had a appointment with another Cardiologist wonderful Dr and because my heart is so thick it makes it hard for it to fill
The obstruction is clear but the rest of it is a mess.
He told me he will start the the evaluation for a Heart Transplant. I am hoping I don't need it and it just a set back.
I just don't know what to say or do.
For everyone who reads this go to a Hospital Of Excellence, don't let anyone tell you different fight for your rights so this doesn't happen to you ..

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Profile picture for Dana, Volunteer Mentor
Mentor
Dana, Volunteer Mentor | @danab | Oct 30 12:56pm
In reply to @holly1275 "Hi Dana; How did you deal with the anxiety, I am so tired I am so..." + (show)
Profile picture for Dianna @holly1275

Hi Dana;
How did you deal with the anxiety, I am so tired I am so hoping that with the testing coming up I might just beat this whole thing. It hard because there are some days I wake up and try to do things as soon as I exert myself my heart rate is all over the place. I get to the point I can't breath. I was so hoping after this REDO Septical Myectomy, it would have made life easier and I was on my way back to life as I knew it before with some limitations.
But after having test there was things that showed up that changed my life.
I am still on the edge about having anymore procedures done did you feel that way?? I am glad you reached out and you are doing great and life is better that is a lot of encouragement to hear that.
Thank You And God bless

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Dianna @holly1275 That's a tought one as i didn't handle the Anxiety as well as i probally should have. First I will say I have not had the exact problem you do now that I read about it. I did have thinking of the muscle on the outside bottom which gave me Arrhythmias which is very scary also. I would go into a rythum that would be like a quiver so no blood was flowing and it did cause a lack of oxygen so in some ways similar.

The surgeries I had were done via my arteries in the groin and they would try to stop the bad rhythms by burning the pathways causing them but it was not always easy to find them.
So we got to the point where the ablations weren't working and the meds were not either. For me I finally got to the point where I probally was looking at meeting God a bit earlier
Than expected. I guess I would say having a great team at Mayo Clinic and the potential for Heart Transplant was my saving moment. I was looking forward to something different than what I had been thru and I'll admit I actually was praying for God to take me rather than deal
With this heart that was failing. So when my Doctor i had for the VT which is Ventricular Tachycardia of really fast heart beat suggested being evaluated for Transplant that actually gave me hope. So as also you figured out my faith was a factor also.
So I really hope this helps as you so want to be back to where you were and maybe Heart Transplant can give that to you. I also will put a plug in for Mayo Clinic and they do hundreds if not thousands of Transplants and the team aproach was awesome. I always had my questions answered and support staff like the Social workers for general problems like insurance or things that seem to come up but are not medical in nature, the Chaplins were great and everyone is so eager to help.
Try and stay
Positive that as i like to say when one door is closing then God will open another door and with me that was for sure how it worked out.

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Dianna | @holly1275 | 6 days ago
In reply to @danab "Dianna @holly1275 That's a tought one as i didn't handle the Anxiety as well as i..." + (show)
Profile picture for Dana, Volunteer Mentor @danab

Dianna @holly1275 That's a tought one as i didn't handle the Anxiety as well as i probally should have. First I will say I have not had the exact problem you do now that I read about it. I did have thinking of the muscle on the outside bottom which gave me Arrhythmias which is very scary also. I would go into a rythum that would be like a quiver so no blood was flowing and it did cause a lack of oxygen so in some ways similar.

The surgeries I had were done via my arteries in the groin and they would try to stop the bad rhythms by burning the pathways causing them but it was not always easy to find them.
So we got to the point where the ablations weren't working and the meds were not either. For me I finally got to the point where I probally was looking at meeting God a bit earlier
Than expected. I guess I would say having a great team at Mayo Clinic and the potential for Heart Transplant was my saving moment. I was looking forward to something different than what I had been thru and I'll admit I actually was praying for God to take me rather than deal
With this heart that was failing. So when my Doctor i had for the VT which is Ventricular Tachycardia of really fast heart beat suggested being evaluated for Transplant that actually gave me hope. So as also you figured out my faith was a factor also.
So I really hope this helps as you so want to be back to where you were and maybe Heart Transplant can give that to you. I also will put a plug in for Mayo Clinic and they do hundreds if not thousands of Transplants and the team aproach was awesome. I always had my questions answered and support staff like the Social workers for general problems like insurance or things that seem to come up but are not medical in nature, the Chaplins were great and everyone is so eager to help.
Try and stay
Positive that as i like to say when one door is closing then God will open another door and with me that was for sure how it worked out.

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Thank you for answering me back.
God always has plans, I will hope that thing turn out for the best, and leave it in his hands.
I know I am at a hospital of Excellence now. It is a step in the right direction and for once after several years of not having the greatest care.
Thank You And God Bless

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pumpposse | @pumpposse | 4 days ago

Hi Dianna,
I had my heart transplant 2 years ago at age 52. I had a long, emotional and anxiety-ridden path to transplant. At age 35 I had a surgery with complications leading to septic shock, cardiomyopathy and eventually heart failure. Given it was a surgery that led me to the need for a heart transplant, I wasn't eager to jump into another surgery. My husband thought it was an easy decision because we have two children.
My approach was measured. My anxiety was so high that I could only cope with things step-by-step. For example, like you, my doctor suggested I interview for the heart transplant. I could commit to that because they could turn me down or if they approved me I could move on to my next decision which was to decide if I wanted to go on the waiting list. Once I went on the waiting list, I still had time to decide if I could go through with the surgery.
Wishing you some peace through your process.

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Linda, Volunteer Mentor | @walkinggirl | 3 days ago
In reply to @pumpposse "Hi Dianna, I had my heart transplant 2 years ago at age 52. I had a..." + (show)
Profile picture for pumpposse @pumpposse

Hi Dianna,
I had my heart transplant 2 years ago at age 52. I had a long, emotional and anxiety-ridden path to transplant. At age 35 I had a surgery with complications leading to septic shock, cardiomyopathy and eventually heart failure. Given it was a surgery that led me to the need for a heart transplant, I wasn't eager to jump into another surgery. My husband thought it was an easy decision because we have two children.
My approach was measured. My anxiety was so high that I could only cope with things step-by-step. For example, like you, my doctor suggested I interview for the heart transplant. I could commit to that because they could turn me down or if they approved me I could move on to my next decision which was to decide if I wanted to go on the waiting list. Once I went on the waiting list, I still had time to decide if I could go through with the surgery.
Wishing you some peace through your process.

Jump to this post

@pumpposse Welcome to Mayo Clinic Connect, a forum where you can meet others with similar health issues. It is not a place to get professional medical advice or care. We share experiences and point in the direction for more information and reliable sources to others.

Thank you for posting such a helpful plan for dealing with the decisions for your heart transplant. You wrote of your anxiety level and how you decided to cope with it - such wise advice. Perhaps @holly1275 Dianna would find your technique helpful.

Are you a part of the Hypertrophic Cardiomyopathy Association? Perhaps not, your heart issue may not have been due to HCM. I point 4hcm.org out because the founder Lisa Salberg, also had a heart transplant and is a vocal advocate for those who are on that journey.

Thank you, again, for sharing.

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