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Options for End-Stage Single Ventricle CHD (40y/o female)
My sister (40F) is currently in the ICU with end-stage complex congenital heart disease (Single Ventricle). She has never undergone surgery. Due to heart failure, she is suffering from severe hypoxia and pulmonary edema.
Our History:
When she was 2 years old, her parents took her to a top hospital in Shanghai. After a long wait, doctors advised that surgery was possible but carried an extremely high risk of mortality. At that time, her mother (my aunt) made the heartbreaking choice to forgo the surgery, fearing she would lose her toddler on the operating table. She hoped to at least give her daughter a chance to live for a few more years at home. To our amazement, my sister has persevered for 40 years, living a life filled with love, art, and devotion to her family.
Current Dilemma:
She is now in a critical state, but she remains fully conscious. Even in the ICU, she tries to comfort us and masks her pain. Local doctors have suggested ceasing treatment, stating that a heart-lung transplant is the only option. However, the costs are staggering (approx. 2 million RMB), the surgery is life-threatening, and they estimate it might only extend her life by 2 to 3 years due to the chronic strain on her other organs.
Our Plea:
Making the decision to give up is incredibly difficult for our family. If there is even a slim hope for a better prognosis or a more sustainable treatment, we want to explore it.
Based on your experience with adult single-ventricle patients, is the "2-3 year" survival estimate after transplant always the case? Are there more successful outcomes at Mayo?
Are there any advanced medical managements or palliative options that can alleviate her current respiratory distress without a full transplant?
In her current fragile state, is there anything Mayo Clinic can offer that we might not have access to here?
We are desperate for any guidance you can provide.
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I cannot help....sorry. I did want to let you know that I cared enough to read your sad comment, and to wish all of you the very best of human experience, whatever that must be going forward. I hope you get a single response, at least, from someone who has this experience in their history.
Bless you!
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1 ReactionI would say call the Mayo Clinic and ask them if there’s anything they might be able to do. I also would send them a packet of information about your sister’s care and ask them for help. That way.
I know they have done lung transplants, and heart transplants, but I don’t know if they’ve done them both at once.
So sorry to hear about your sister’s lifelong struggles. I do hope you can get some.
I wish the very best for your family and your sister and the days ahead.
Hi @marshallfu Welcome to Connect. I am glad you created this discussion to learn more about how you can help your sister.
I agree with @minnesota10 that contacting Mayo Clinic is a good option. I am not a medically trained person so I cannot answer most of your questions. I can tell you as a Mayo patient I would recommend them.
I am tagging @jackiez that has mentioned heart/lung transplant at Mayo Clinic.
Also, I did find information published by Mayo Clinic that may be helpful for some of what you are asking. Here is an article about their experience, “ Conclusions: Cardiac and pulmonary transplantation can be applied to morbidly ill patients with excellent operative and intermediate-term survival.”
- Survival benefits of heart and lung transplantation
https://mayoclinic.elsevierpure.com/en/publications/survival-benefits-of-heart-and-lung-transplantation/
Here is contact information for Mayo Clinic. You sister’s doctor(s) could contact them or you can directly. http://mayocl.in/1mtmR63
How are you doing?
@jlharsh @marshallfu
Yes I am a Mayo patient that received a heart-double lung transplant in April 2021. I was 55 at the time and also had a congenital heart defect and had open heart surgery when I was 5 months old. However, I had a coarctation of the aorta, a different issue than your sister. I developed restrictive cardiomyopathy and pulmonary hypertension as an adult. I was pretty ill when I received my transplant but definitely still walking, talking and not on oxygen.
I would also recommend getting second or third opinions from Mayo and elsewhere. And also look up specialists for your sister’s condition and contact them as well.
If you have any other questions, please ask. I am living life to the fullest and enjoy a blessed life. Good luck!
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2 ReactionsThe only concern regarding a second opinion is where is she physically located in reference to a Mayo Hospital that performs this surgery and whether she is stable enough to be transported to another facility. Unless this is dealt with upfront everything else makes no sense. Mayo doctors could do a face time call with her treatment team potentially not requiring them to travel there initially.