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booperlaw50

I am a 60 year old female who is an 18-month survivor [...]

Posted by @booperlaw50 in Transplants, Oct 28, 2013

I am a 60 year old female who is an 18-month survivor of back-to-back cardiac arrests in June, 2012. I had two failed stents, and subsequently received an AICD placement thru Austin Heart Hospital in September, 2012. Progress was slow but steady. For an individual who was deprived of O2 for 7 and 17 minutes, I have remarkable function despite reliance on just ONE viable vessel (LAD), stented. I have COPD, CHF and now digestive issues because of all the crowding in the chest cavity. But my biggest problem is "lead legs" from the hip down - walking has been reduced to shuffling, and I try at least once a week to get behind my self-propelled lawn mower and have it pull me around the yard for at least 20 minutes. However, my arms start hurting, then my chest, and my legs tingle for hours! My feet respond negatively to stepping on something as minor as a small pebble or twig; I have a tendency to trip and fall easily. Complicating factors - diabetes, fibromyalgia, neurovascular issues, degenerative disc disease, and of course, peripheral artery disease. Would love to know more about how to restore part of the vitality I was accustomed to prior to my heart attacks. I weigh about 125 lbs now, have fullness in the chest and lungs from the size/weight of an 8" balloon heart resting on everything in there - I asked about a transplant in Austin, was told I needed a PET scan - but there aren't any in Austin!! Unbelievable to me. I really feel like I would benefit from a heart transplant. Have lots to live for, just want some encouragement and positive feedback. Thanks.

Tags: cardiac arrests, Diabetes, Fibromyalgia, balloon heart, PET scan, heart transplant

Posted by @LeeAase, Oct 29, 2013

Asking Kristin for her thoughts...

@keggebraaten

Posted by @keggebraaten, Oct 29, 2013

Thank you for your post. Mayo Clinic Transplant Center would be happy to provide an opinion about your situation. If you want to call us, we can help facilitate a review of your medical information to see if transplant may be an option, prior to you making a visit to see us. Our number is 800-422-6296, Monday through Friday, 8am to 5pm. Feel free to call and speak with us about your situation.

booperlaw50

Posted by @booperlaw50, Oct 30, 2013

Thanks for your response Kristin. I have no health insurance - waiting on the AHC Act to buy some going forward in January. However, my Medicare kicks in 2.5 years from the original date of disability (as determined by SSDI), so I will have Medicare and a supplemental coverage if I live to August, 2014. (I haven't flown since my heart attacks, but feel comfortable driving to Rochester in 4-5 hour blocks.)

I can call the Transplant Center, but want to make sure I don't need to wait till I have insurance coverage. My medical records are about 4" thick... from neurosurgery at Stanford Stroke Center in 1992 all the way up to the AICD placement in 2012.

Of interest, my attending cardiologist at Austin Heart Hospital told me this: "If you make it to age 63, we'll talk transplant. But we don't do whiners!!" More recently (July 2013) my follow-up cardiologist told me to be considered for transplant I would have to be lying in a hospital bed. True at Mayo? Because although I get up and move around my house cooking, cleaning, doing laundry, I feel hopeless for my future. I take care of my daughter's mobile dog grooming business affairs and make all her appointments - so I am not completely dysfunction and do have some relevance to my life. However, I want to do so much more but don't want to have false hope.

If you still think a call is advisable, I will definitely make the call. Just want you to have as much info as possible.

Thanks again,

Betty

Posted by @keggebraaten, Oct 30, 2013

Hi Betty,
Health insurance is definitely a concern. We would not be able to offer you any guarantees regarding a transplant for your future. However, it doesn't cost you anything to make this phone call. Our office would be able to talk with you about the process and review your information. We also have an extensive financial team that would be able to talk to you about your lack of coverage and your future plans. They may be able to provide you with some advice about the financial piece as well. I don't want to give you false hope, as I think lack of insurance is an obstacle, but I would make the call if you are able to and gather all the information you can. I hope that helps! Good luck to you!

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