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Redo IVS resection or septal myectomy
I was diagnosed with hypertrophic obstructive cardiomyopathy (HOCM) earlier this year. At the time, I was largely asymptomatic and felt relatively well. However, after undergoing scans and other tests, the doctors discovered that my condition was serious enough that I needed surgery as soon as possible.
I am a 30-year-old Zambian, and unfortunately, I cannot afford to travel abroad for treatment. Zambia has very limited options for complex heart surgery, so I went to our only cardiac hospital, hoping that I could receive the treatment I desperately needed.
I underwent a septal myectomy, which was the first time this procedure had been performed at the hospital. Thankfully, the surgery itself went well. However, the most devastating part is that the obstruction and underlying problem were still present after the operation.
I have now been advised to undergo a second, or redo, septal myectomy. But there is no guarantee that the second procedure will completely resolve the problem. This has left me frightened and uncertain about my future.
I am only 30 years old. Before all of this, I worked in the mining industry and was building my career and my life. Now, because I still have this heart condition, I am struggling to find employment. I cannot afford to travel to a high-volume center that specializes in HOCM and complex septal myectomy, yet I know that these specialized centers may give me the best chance of getting the problem corrected.
What makes this even harder is that I only got married in September last year. Just a few months later, in January, my entire life changed when I was diagnosed with this condition. I had so many plans for my future, my marriage, my career, and my family. Suddenly, I find myself worrying about whether I will even have the opportunity to live the life I had planned.
I feel like I am running out of options. Every day, I am reminded that the problem is still there, and I am terrified of what that could mean for my future. I don’t want to give up, but I honestly don’t know where to turn.
If I had the financial means, I would want to have my redo surgery performed at a high-volume center of excellence, such as Mayo Clinic or Cleveland Clinic, where specialists perform these complex procedures regularly. Unfortunately, the cost of treatment abroad is far beyond what I can afford.
I am not asking for sympathy. I am asking for a chance—a chance to receive the right treatment from specialists who have extensive experience with cases like mine, and hopefully get back to living a normal life.
I am only 30 years old, newly married, and I still have so much I want to accomplish. I want to work again, build a family with my wife, and have a future without constantly wondering whether my heart condition will take that future away from me.
I truly don’t know what the next step will be, but I am desperately hoping that someone, somewhere, can help me find a way forward.
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@david96,
Welcome to Mayo Clinic Connect.
Wow.
And Wow is an understatement.
I can only imagine how you feel. No wonder you feel fearful and uncertain.
The Mayo Clinic has international partners, but when I checked, there were none close to you. London, UAE, India...
Here is a link to the Mayo Clinic International Department:
https://www.mayoclinic.org/international
You have a reason to be fearful. Septal myectomy is such a specialized procedure, that it should only be done by a skilled surgeon who has done hundreds, if not thousands.
That you still have an obstructions speaks to this. The risk of over correcting this obstruction can be devastating.
You really are in a difficult position.
My hypertrophic heart was breaking when I read your story!
Has your cardiologist suggested Camzyos or Afecatman as an alternative to another septal myectomy?
I'm not a doctor. I can only share my story and advice and ask questions. I just wonder if you were offered drug treatment or if your HOCM was too far advanced.
Were you able to get a second opinion?
The thought of going through another open heart surgery with the risks involved in your case would cause me to research alternatives, second opinions, or third opinions.
I can't imagine how this must make you feel. To be so young and full of life and a new future, and now this colossal diagnosis and failure of treatment.
I would encourage you to contact the Mayo Clinic International department listed in the link above and at least start there. They can give you information about Mayo Clinic services available.
When do you see your doctor again?
How are you feeling after the surgery?
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2 Reactions@david96, I can imagine this feels like life interrupted. @karukgirl has given you the link to inquire about getting care at Mayo Clinic. I know you said that you do not have the funds to travel. International patients are generally not eligible for financial assistance, however it may be worth a try.
Find more information at charitable care and financial assistance at Mayo Clinic. https://www.mayoclinic.org/billing-insurance/financial-assistance
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2 Reactions@karukgirl
Dear Debra,
Thank you for your kindness and encouragement. Your support means a great deal to me and my wife.
To answer your question about second opinions, I have consulted three different cardiologists and two cardiothoracic surgeons. All have recommended a redo septal myectomy. Despite that agreement, the thought of another operation is still frightening, especially with the financial challenges of accessing specialist care abroad.
I am still taking medications, including metoprolol, warfarin, and water pills. I appreciate you mentioning other treatment options, and I can ask my cardiologist whether these might be suitable for my particular situation.
I have now emailed the Mayo Clinic International Team, as you suggested, explaining my circumstances and asking about a specialist review and any possible assistance. I am hoping they can help me find a way forward.
Thank you for listening and helping me feel less alone.
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3 Reactions@colleenyoung
Thank you, Colleen, for your understanding and for sharing the financial assistance information. I have now emailed the Mayo Clinic International Team explaining my medical and financial circumstances.
I understand from your advice that international patients are generally not eligible for financial assistance, but I hope they might consider my situation or suggest another option. Thank you for making me feel welcome and supported in this community.
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2 Reactions@david96 , this is the wonderful part of Mayo Clinic Connect...it "connects" you to people who share your same issues, which helps us not feel so alone!
I hope you have had a chance to read some of the stories here in the HCM group.
Please come back and share what you find out from Mayo Clinic International...I am praying for you!
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2 ReactionsWelcome to the group - you will find a lot of information, support and sympathy here. You don't mention your symptoms or how they are impacting your daily life. I think that we all are frightened at first - and you should be - it is your heart after all and you are quite young and with a long, full life most likely ahead of you. I think it is important to do what you can to lower your anxiety and to live your best days, weeks, months and, hopefully, many years! Consider your heart as your friend because it has told you what is going on. I'm sorry that you can't access better treatment options!
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1 Reaction@karukgirl Thank you, Debra, for your kindness and prayers. I heard back from Mayo Clinic International. They explained that I would need an in-person evaluation, as they cannot offer a remote consultation. Unfortunately, there is no financial assistance available to me, so the cost remains a challenge. But I will keep pushing and holding on to hope—all shall be well. Your support helps me feel less alone, and I’ll keep you updated.
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2 Reactions@david96, I was afraid that might be the answer.
How disappointing.
I did a little on-line research, which you may have done already, but I did find this from AI:
**Several organizations facilitate access to open-heart surgery for African patients through Centers of Excellence or by supporting local capacity. EMERGENCY International operates the Salam Centre for Cardiac Surgery in Sudan, which provides completely free, high-quality cardiac care to patients from Sudan and neighboring countries.
Other key organizations include:
Pan-African Society for Cardiothoracic Surgery (PASCaTS): A network that promotes training and clinical missions to establish sustainable cardiac surgery programs in sub-Saharan Africa.
Hospitals for Humanity: A US-based NGO working in Nigeria to provide free open-heart surgeries to children, having performed over 180 interventions with a 96% success rate.
Foundation for Cardiac Care in Africa (FCCA): Supports training programs at institutions like the Kilimanjaro Christian Medical Centre (KCMC) in Tanzania to develop regional cardiac specialists.
Heart Healers International: Collaborates with the Uganda Heart Institute to perform surgeries and train local teams, with over 1,000 surgeries performed since 2007.
Chain of Hope: Works in Ethiopia and other countries to establish infrastructure, provide equipment, and facilitate surgical missions.
Ghana Heart Foundation: A non-governmental organization that defrays costs for Ghanaian patients requiring open-heart surgery at the National Cardiothoracic Centre.
Have you checked any of these avenues?
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2 Reactions