Not Sure How To Deal With Might Needing A Heart Transplant

Posted by Dianna @holly1275, 1 day ago

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.

Debra, Volunteer Mentor | @karukgirl | 1 day ago

Dianna @holly1275, I am so sad reading this post.
Like you...I don't know what to say either, except echo you in repeating your encouragement to other to go to a Center of Excellence.
We try and emphasize that sentiment here on Connect, but sadly, for some it is not possible.
I wish I could impart some words of wisdom, but right now you need support that just listens.

May I introduce you to our esteemed Mentor @danab, here is his spotlight:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/connect-feels-like-home-with-a-heart-meet-danadb/
Dana had heart issues that lead him down the road to a heart transplant at the Mayo Phoenix campus. He is inspiring and has a lot of wisdom he shares.
The Mayo Clinic is a COE for Hypertrophic Cardiomyopathy and takes on the most complicated of complicated cases.
You mention that being seen at a COE (Center of Excellence) is important, may I ask have you been seen at a COE now?
I hope you can find some hope...life is hard and feels empty without hope. When will you hear back from your doctor?

Dianna | @holly1275 | 1 day ago

In reply to @karukgirl "Dianna @holly1275, I am so sad reading this post. Like you...I don't know what to say..." + (show)

Sometime next week I hope .
Yes I am finally at a COE and I couldn't be at a better place..

Rosemary, Volunteer Mentor | @rosemarya | 1 day ago

@holly1275, I don't have any experience with heart conditions, but I am a transplant recipient, and I understand how frightening the thought of an organ transplant is. I had a liver and kidney transplant in 2009, and I want to assure you that the doctors at the level of transplant speciality are extremely passionate and dedicated to offer the best possible care. It sounds like you are in a good place right now. Try to get some rest
Please know that my thoughts, hopes, and gentle virtual hugs are with you.

Linda, Volunteer Mentor | @walkinggirl | 4 hours ago

@holly1275 Dianna, I am so sorry and saddened to read your post. This has to be among the most stressful times ever in your life and you are experiencing it while feeling so tired.

As Debra pointed out, Mentor Dana had a heart transplant. May I suggest that you also look at the founder of the Hypertrophic Myopathy Association, Lisa Salberg? Website is 4hcm.org and their email is support@4hcm.org. I too hope that you do not need a heart transplant, but Lisa had a heart transplant a number of years ago and I envy her energy, knowledge along with her zillion percent support for all who are on the heart transplant journey. While you are pursuing your present care, please also do an intake at that organization. Having as many sources as possible on your team is a plus.

I am sending you a ((HUG)) along with my thoughts and wishes for positive steps on your journey.