Medical Assistance for Levi

My dad, Levi, was born with genetic cardiomyopathy. Because of his genetic heart condition he has has developed heart failure.

He is 54 now and was diagnosed with heart failure 20 years ago at the age of 34. 20 years ago! Most people don’t live longer than 5 years after diagnosis. I’ve worried about him since the day we were told that news. I’ve also been grateful for every single day with him. Grateful that he has taken such good care that his body has been able to compensate for so long.

My dad has always been mindful and taken very good care of his body. He knows that every decision is one that will impact his health and chooses to continue to make ones that are beneficial for his health. His life has been full of choices to get the help he needs for his heart.

An important one I remember is when he moved out of Alaska when I was young so he could live close to a cardiologist. It meant being further away from family as SE Alaska has smaller towns and specialists can be limited but it was what he needed. He has always wanted to move back and misses home but has continued living in Washington to receive care.

I could go on about the daily choices he makes for a healthy lifestyle. From what he puts in and on his body, to sleep, to limiting where he goes and the people he sees so he doesn’t get sick.

At his appointments over the years his doctors have always been impressed at his physical ability despite his low heart function. Time and time again they comment how they don’t see people with his test results walking around much less working every day.

He has suffered for so long but has continued to persevere with this degenerative disease. He has worked exhaustively despite his reduced heart function to keep his health insurance and provide for himself. He has kept healthy and has taken all the prescribed medication. When he gets home from work he props his legs up so his heart doesn’t have to work as hard. He is very in tune with his body and can feel every change - what helps and what doesn’t.

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This go fund me is being set up to help him with his medical expenses, his rent, his impending advanced heart therapies. This could be a heart transplant but it’s possible they may do an LVAD (left ventricular assist device), or he may be sent home with a pump that delivers a continuous slow flow of medication.

Whatever advanced therapy option is chosen my dad will have many appointments after he is discharged through the end of the year and next year.

The first two options he will need to live with me for no longer than 3 months. Keeping his apartment would be so helpful so he doesn’t have to search for a new place in a few months. Right now I live two hours away from UW, that’s four hours of driving every day and will be four hours of driving on appointment days once he is discharged. Though we do hope to move closer if we can.

He is at University of Washington right now where they are doing extensive testing to see what advanced therapy option will be best for him. They are doing CT scans, ultrasounds, dental work up, blood work up, and a lot more to evaluate him for a heart transplant.

Preparing for a heart transplant is different than we thought it was. I have been getting many questions regarding this, the same questions that we had. I wanted to take the time to answer some of those. Getting on a heart transplant list does not mean that you will be placed at the bottom. In fact, we learned that some have waited two days. Others have waited longer. The recovery in the hospital can be short, we met someone who had a transplant and was able to go home after 8 days. Some need to stay in the hospital for 3 months.

Right now he is doing good. Getting up and going for walks. When you have heart failure your heart does not pump out enough blood which causes fluids to build up in your body. Getting that extra fluid out is going to help the pressures within his heart. He still has extra fluid but they have been able to get rid of a lot, which is so good! He still feels sick, of course, with his heart failure. But his care team has been able to improve his numbers on everything that is being tested. There is still more to improve but I am hopeful as they have been helping him to make improvements each day.

Thank you for reading. We are so grateful for all those who have reached out and offered help in different ways.