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Megan S. Family Member

Six days post surgery and still in the ICU

My father experiences Stage Four (D) Heart Failure, Ischemic Cardiomyopathy, Chronic Atrial Fibrilation, Pulmonary Hypertension (due to left heart disease) and CKD Stage Three. He underwent the LVAD procedure on Friday, April 26. Six days later he remains on a ventilator under heavy sedation. He has experienced difficulty with blood pressure and also contracted ventilator associated pneumonia. Additional testing revealed that his ventricular septum is shifted left with a thickness of over 16 mm. He has a small left ventricle cavity and is also experiencing difficulty exacting the right balance through LVAD RPMs. As a concerned daughter, the sight of him lying immobile and so compromised is incredibly freightening. I fear that he may not pull through this and I am beside myself. Especially considering my mother's experience and stoicism throughout this process. My father has an online health portal that he provided me access - I check this several times an hour, feverishly researching lab values and medical terminology. Yesterday the ICU limited contact given the amount of time the nurses need to manage my father. I am so scared. Any insight and support would be incredibly meaningful. Thank you kindly in advance.
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Amy N.

My dad was in the ICU for 2 months, had a stroke 7 days after surgery which left him with left sided weakness and no vision. This surgery is very hard on the body and it takes a long time to recover. Hang in there, don’t give up, his body is trying to recover and it will take time. Some get the surgery and then they go about their business and some just take longer to recover and need time. It’s exhausting emotionally and physically.  Find support to vent to, anyone who will listen. Talk to your LVAD team they are a good resource. Good luck with your dad! 

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In reply to by Amy N.

Megan S.

Amy, I am so happy to hear your father survived. I appreciate the support and encouragement. Sadly, my father passed on Thursday, 34 days post surgery. He left us peacefully and was surrounded with family and love. 

All my best to you♥️

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In reply to by Megan S.

Amy N.

Dear Megan, 

I’m so sorry to hear about your father. My prayers to you and your family. 

Amy ❤️

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In reply to by Amy N.

Megan S.

Your words are comforting, thank you so much, Amy. I send my best for continued good health and happiness to you and yours. ♥️

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In reply to by Megan S.

Mark H.

FYI. after getting a LVAD recovery was slower than I thought it would be. Don’t get discouraged. It took me about a month in the hospital. And another couple of months at home. Before I felt great. But be cautious. As he starts feeling better, carelessness May set in. Work on setting up good routines. And be especially cautious when the normal routines get interrupted. Make a check list and check it before you leave the house. (Don’t let the back up pack out of your sight) and keep it in a central location in the house that everyone knows where it is next to the alarm information sheet. Also be extremely cautious on special occasions (holidays, someones graduation, going somewhere special ETC) I let my guard down and somehow didn’t get my fresh batteries on before we left on a few hour trip. We had company with us , and was planning on a fun filled day in San Francisco. Second mistake, because I had passengers in the car I placed my back up pack in the trunk instead of next to me where it usually sets. So when I left the car I didn’t even miss it. Until my low battery warning went off. It really made for a bad day. 

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In reply to by Mark H.

Gayle W.

I received my LVAD Feb. 1, 2010 at 74 years of age and I am really Blessed to be here. I was in the hospital for a month. I am now 83 years of age and travel back to Toledo, Ohio and Pittsburgh, PA every summer. Still drive and feel great. I am sure if you feel good and enjoy what you do you will be okay doing what you like to do. Just be careful at all times. God Bless You.
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In reply to by Gayle W.

Megan S.

Gayle,

Thank you so much for the inspiration. I hope you have MANY years of health and happiness (travel, too) ahead!

 

Megan

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Megan S.

I appreciate you sharing your experiences with me, Mark. With a heavy heart, my father passed on May 30 after almost 5 weeks in the ICU.

I send my best wishes for your continued health and success with the LVAD.

With appreciation, 

Megan

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Matthew A.

Hello,

I have an LVAD. It's sad that he passed away. But just know that taking the risk of the surgery even though he passed was not in vain. It shows that he wanted to continue living and sharing his love. He fought for his life and your love. I continue living just because I can't leave my loved ones. So I'll do what it takes to stay around plus I'm only 34. 

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Megan S.

I appreciate your kind words and wish you many coming years of good health and enjoyment of life with your dear ones.

Warmly,

Megan

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gail p.

Hi Megan,

My daughter did not wake up for 22 days after her lvad was placed. She was in the hospital a total of 7 months. She is now going on her 7th year with the lvad. She took a long time to recover once I bought her home from the hospital. She had a baby seven years ago and ended up with post partum myocardiopathy. She has never been able to care for her child who is now seven and healthy because she also during her lvad surgery lost blood flow and oxygen to her brain so she has a brain injury with memory loss. Hang in there God is good and will restore your father some recoveries just take longer than others. It is really hard on the family watching their loved ones going through this. My daughter is 37 year old and cannot work any more due to her brain injury, but she is alive to see her kids grow.

 

Gail Palmer/care giver

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In reply to by gail p.

Megan S.

Thank you for sharing your experience of the LVAD journey with your daughter. It brings me happiness that your incredible family support has afforded an ongoing extension of life. You and your daughter (she sounds amazing, as do you) inspire me. I am saddened to convey that my father, after 35 days of fighting in the ICU, passed on May 30. 

My heart extends to you and I am grateful of your message.

 

💛,

Megan