LVAD

Posted by pattymartin @pattymartin, Oct 26, 2017

I was diagnosed with viral cardio myopathy 17 yrs ago with an ejection fraction of 10%, at which time I was implanted with an AICD. 3 yrs. ago I was implanted with an LVAD, with my heart enlarged at 10 cm. and am now awaiting transplant. I try to stay positive and visit and talk to other patients. I am a patient of Ochsner Foundation in New Orleans. Anyone who is interested or has any questions about the LVAD can chat with me. It was the best decision that I and my doctors have made.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

fatherscaregiver | @fatherscaregiver | May 28, 2024

In reply to @vg1234 "Thanks for the information, and I am sorry to hear of the complications with Parkinson's after..." + (show)

There are few things I would ask myself and my medical team if it was me.
1. How is my quality of life currently? Am I happy and able to enjoy my life as is with the LVAD?
2. How is my life restricted with the LVAD? What will my life be like without the LVAD?
**Essentially pros and cons list
3. At my age am I a candidate for transplant?
4. At my age what is my recovery like and anticipated life expectancy post transplant? (Keeping in mind everyone is different)
5. What testing must be done in order to be listed as a candidate for transplant.
6. Is there a certain age where additional testing may be required or requested.
7. Are there other patients in my age range that would be willing to discuss their recovery. (my dad met a patient only a few months younger, he had a wonderful recovery and success).
I certainly wish you the very best! Transplant is such a wonderful gift and such an impressive medical treatment. The advances of medicine are incredible. I think it is great that you are reaching out to others and doing your research.

vg1234 | @vg1234 | May 28, 2024

In reply to @fatherscaregiver "There are few things I would ask myself and my medical team if it was me...." + (show)

Thanks, this is wonderful information
On Tuesday, May 28, 2024 at 12:28:21 PM CDT, Mayo Clinic Connect < nf+aa574794+9030496@n1.hubapplication.com> wrote:

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Mayo Clinic Connect
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| Reply by @fatherscaregiver to a comment you posted on discussion "LVAD"

Excerpt of your comment
Thanks for the information, and I am sorry to hear of the complications with Parkinson's after...

Their reply
There are few things I would ask myself and my medical team if it was me.
1. How is my quality of life currently? Am I happy and able to enjoy my life as is with the LVAD?
2. How is my life restricted with the LVAD? What will my life be like without the LVAD?
**Essentially pros and cons list
3. At my age am I a candidate for transplant?
4. At my age what is my recovery like and anticipated life expectancy post transplant? (Keeping in mind everyone is different)
5. What testing must be done in order to be listed as a candidate for transplant.
6. Is there a certain age where additional testing may be required or requested.
7. Are there other patients in my age range that would be willing to discuss their recovery. (my dad met a patient only a few months younger, he had a wonderful recovery and success).
I certainly wish you the very best! Transplant is such a wonderful gift and such an impressive medical treatment. The advances of medicine are incredible. I think it is great that you are reaching out to others and doing your research.
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vg1234 | @vg1234 | Apr 9 3:50pm

In reply to @fatherscaregiver "My dad was registered one week prior to his 71st birthday. He received his transplant two..." + (show)

@fatherscaregiver

My dad was registered one week prior to his 71st birthday. He received his transplant two months later (at age 71). I know that once the decision was made to list him, everything moved quickly. He had to be registered prior to turning 71. I'm not sure how old you can be after being registered to still qualify for the transplant. Seems like there would be some restrictions. For my dad, I wish there was more extensive testing due to his age. After transplant he started complaining about his right leg not working. We questioned if he had a stroke during transplant. He did not. It took a couple of years and many neurologists to finally diagnose parkinsonism. He did not match any one form of Parkinson (there are eight different types) so they diagnosed it generically as parkinsonism.
My personal opinion, solely mine, not medically based, but when the recipient is elderly there needs to be more consideration about what is best. Just because he qualified and had a great match, doesn't mean he should have had the transplant. Please don't get me wrong, I am extremely grateful for the gift that was given and the extra time with my dad. However, his extra years were not good. This again was due to the Parkinson, not the transplant. He lived six years post transplant. During that time he was never independent, never golfed again, never walked on his own again and spent the last three and a half years in a nursing home. He never had the quality of life that we had hoped for.
The testing process was rushed and as a family we were excited for the opportunity. We didn't understand the full process and really didn't think about any other conditions he may have had. Looking back I wish he would have had a neuro psych exam prior to listing. This may have revealed the parkin sons sooner.
When it is an older person, more questions should be asked, more test should be completed. We are not looking for another successful transplant, a number, as a patient and the patient's family, we are looking for extended quality of life, not quantity.
I hope this helps you. I want to reiterate, his transplant was a great success, a great match. His problems were from other unknown medical conditions.

Jump to this post

I have not been considered for a transplant. My situation is Cardiac sarcoidosis. I was 69 when diagnosed and 70 now. Can you tell me where your father went. What Location and any suggestion would be appreciated.

vg1234 | @vg1234 | Apr 9 4:08pm

I was diagnosed by another hospital when I was 69 with Cardiac Sarcodosis. I was told I could use this as a bridge to a transplant. I went to another doctor for something totally different and they saw in their notes I was on destination Therapy(No transplant) I never was told this designation. I was told by others in the field they don't like to take people over 70, which at the time I wasn't. This is what spurred my question to you. Any info as far as getting on a list will be helpful. I feel I was given bad information

vg1234 | @vg1234 | Apr 9 4:13pm

In reply to @fatherscaregiver "There are few things I would ask myself and my medical team if it was me...." + (show)

vg1234 | @vg1234 | 2 minutes ago
I was diagnosed by another hospital when I was 69 with Cardiac Sarcodosis. I was told I could use this as a bridge to a transplant. I went to another doctor for something totally different and they saw in their notes I was on destination Therapy(No transplant) I never was told this designation. I was told by others in the field they don't like to take people over 70, which at the time I wasn't. This is what spurred my question to you. Any info as far as getting on a list will be helpful. I feel I was given bad information

fatherscaregiver | @fatherscaregiver | Apr 10 6:51am

In reply to @vg1234 "vg1234 | @vg1234 | 2 minutes ago I was diagnosed by another hospital when I was..." + (show)

@vg1234, It is so disappointing when doctors do not explain diagnosis and treatment/therapies to the full extent. My dad was treated at a hospital in Cincinnati, Ohio. There are two hospitals in the area that perform heart transplants. I have very mixed feelings on transplants after a certain age. I do strongly encourage extra testing/exams and lots of painfully honest questions and answers. This is not a simple procedure, recovery or decision. Transplant is definitely life changing and hopefully for the best. I will be totally honest and this is from my dad's experience and mine as his daughter and caregiver. I am very aware that everyone experiences different recoveries, some will have great success in their recovery and will live a full life, while others will not. His cardiac team were wonderful medical providers and we had full trust in them. My dad's experience was very negative. He had additional medical problems that were starting to present but went unrecognized. Looking back we and his team seemed to contribute any symptom he had as heart related and never looked at the possibility it could be something else. Our process was rushed because of his age and I don't feel the testing was extensive enough. Had he received his Parkinson diagnosis prior to listing he would not have qualified for transplant. Our family feels he would have had a much better quality of life without the transplant. We know he probably would have not lived as long but he would have been happier. His life was never the same and he was never happy again. My dad passed six years and one month after transplant in 2023. (Six years post transplant is considered a success without regard to quality of life) I have had a year and a half to look back at things more objectively on his case. My dad was extremely social, went anywhere he wanted, traveled, played golf a few times a week, lived alone and drove up until his surgery. Post transplant, he was unable to walk without the use of a walker, could no longer drive, never played golf again (which was everything to him) and could not live alone. The surgery took a lot out of him and seemed to progress the Parkinson's. We made arrangements for someone to be with him the first few years. As his Parkinson's progressed we were forced to move him to an assisted living (only a few months) and then to full nursing care because he needed more care. My nonmedical opinion is extensive physical testing needs to take place to qualify a patient to list for transplant. There are lots of blood tests run, a very quick meeting with the transplant psychologist, and a meeting with the social worker. There needs to be an extensive, honest physical exam with a physician outside of the transplant team. I with you the very best, I am certain this has been challenging time.

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