A Morning With an LVAD Heart Patient.

Yesterday in Cardiopulmonary class we were going over a case for an LVAD patient. In case you haven't heard of an LVAD (because I know that I hadn't prior to going over the case), and LVAD is short for "Left Ventricular Assist Device" and you can read about them briefly here. LVAD's essentially hook up to part of your heart (the Left Ventricle) and help your heart to pump. The reason you would need an LVAD is essentially because you have had heart failure and your heart could not function properly without. An LVAD might be implanted because your heart is damaged and the hope is that it will heal, that you are waiting for a heart transplant, or because you are not eligible for a heart transplant. It is a very serious surgery.

After we had gone over the case and LVAD's in general for about an hour, the door opened and in stepped a man with a large device strapped around his belt. He came in quietly but I was sitting next to the door and saw him come in. Our professor introduced the patient, an older man with a kind face and wearing a rather colorful red hat. He stepped to the front of the class and began to speak, and the room became silent as we listened.

He explained his story, and how he was born and raised in Georgia and how his mother had Lupus. When he was born, he already had heart problems - and he got his first pacemaker in 9th grade. He received his LVAD two years ago after being diagnosed with heart failure. He wasn't sure that he was going to survive the procedure.
When he woke up in the hopsital, he said he remembered the PT's asking him if he could move his arms and hands. He said,
"I remember thinking I would be happy to.... if they weren't tired down. My hands weren't tied down."

This man underwent extensive therapy to recover. "Don't think for a second that your patient won't have mood swings," he said. "Because they will. All these changes - suddenly everything is different. And it's hard. Every day brings new challenges. And health problems, they do bring mood swings. Anticipate it. Work with it. Be understanding. Empathize, because it happens and it's real. We aren't just patients, we're people. And you - you all have a difficult job. When these patients are at that point they are despairing."

And he could do so little at that time, he said, but he could WRITE. He said he was blessed that he was able to write and never had to stop. It is amazing to me about this fact, because I remember thinking the same thing when I was in the hospital. At least I could write - and I always feel that God gave that as comfort to me, and I'm grateful.
"From writing, I realized that it was not what I was going through that bothered me the most, but what I MIGHT go through. And subsequently, I eventually realized that I just need to deal with the here and now. Leave the financial stuff to the lawyers, and focus on getting better. "One other thing I thought in the hospital", he said. "How does the mind tell reality from fantasy? Surreal from reality?" 
"You'll hear a lot of funny things there."

He told us he remembers learning how to eat again. Learning to sit up, get dressed, get out of bed and, finally, to walk. "Some days I thought it was just too much," he said. "That I'd never turn that corner. That this was too difficult. But one day you will turn that corner...no matter how difficult... and I did. One day, I turned that corner, and I discovered it could be uphill from there. You CAN do whatever you need to do - no matter the challenges. Patients will find a way.

Now, he said, success stories are a two-edged sword with patients. When you talk to them about success, you must do it easy, gentle and don't overdo it. Patient's start to compare. If they can do it, why can't I? And you CAN'T make promises you can't keep. You don't know if things will be fine. These people are sick, and you don't know that. What you want to try and do is to try and get the patient to see beyond where they are currently at. And realize this: LVAD is not a cure. LVAD patients are sick people, but LVAD can give patients the potential to move beyond where they are. To move past those immediate challenges so they can go on and deal with the other stuff, and have that chance to.

Now, this man not only functions, he thrives. He is sick - he carries extra batteries every where he goes. But he changes oil, he vaccuums with a stick vaccuum that doesn't generate static electricity, he fixes dinner and cleans the house for his wife because he feels bad that she works and he doesn't. He wants to see an LVAD patient that's an olympic swimmer (LVAD patients can't bathe (they take showers so as to not get the external batteries wet) or swim. "I'm sure with a good enough wet suit, we could make it work!" He said optimistically.
This man had lived a life of struggle, but he thrived, and he didn't let his LVAD or his heart problems stop him from enjoying life. "I have bad days," he says. "I can't make promises about my schedule because day to day I don't know how I'll feel. But I take it one day at a time.

And this man talks with new LVAD pt's in the hospitals now, to encourage them to live life as fully as possible afterwards!

In regards to getting a heart transplant, he says he's not on the list but will start looking into it later this year. "If my Doctor says the LVAD isn't working, I'll say sign me up. But otherwise - I don't want a transplant," He says. "Save the hearts for those that need it. There's too few of them to go around and too many who are in greater need than I."

I was floored. This man had known heart trouble all his life, but here he was living, breathing, thriving, and not letting something that is such a great limit to him, limit him. He saw past it, while simultaneously taking life day by day.
I felt a great deal of respect because sometimes I feel I complain too much about Diabetes, yet here I am - relatively healthy, insulin in the fridge, snacks when I need it. My body has failed me, yes, in some ways. But still I will work hard to keep up what I have and stay strong in spite of the challenges it has given me. To stay healthy. I can't always, but I can sometimes eat what "normal" people eat. I exercise. I go to bed relatively safe of mind every night. It's hard work and an extra struggle, but my quality of life, which I once despaired in the hospital would always be awful, is not bad. It's just different that what I was used to, and always will be - and I'll have to accept that. Just like this man's quality of life is different because of his challenges, he has found a way to push past them, expand and see beyond the bad, to the what is and what could be.

He left us with this singular though:

"Don't look at the telephone poles as you drive by... you'll get dizzy. Look up and around and towards the distance - and you'll find your perspective again."

As a child, I remember staring at those telephone poles, rushing by in a dizzying blur. But we grow older, and we learn to try and take it all in - the big picture. We lose sight of it sometimes. I guess that's why we have people like this man, who has so wonderful to come in, to remind us to look up and around, lest we miss out on all the wonderful, beautiful things in the world around us - they were there all along, but were waiting on us to truly see them.