Bill's Recent Story


Early in 2008, Bill was diagnosed with severe heart failure. With the help of Dr. Joseph Casella, our family doctor, and the specialized knowledge and outstanding care of Dr. Marc Goldschmidt, Bill recovered enough to regain a full and active life for a time. But his disease progressed, so in 2010 Dr. Goldschmidt sent Bill to see Dr. Zucker, who heads the heart transplant program at Newark Beth Israel Hospital. From that time until his death, his medical team worked together to provide a quality of treatment for Bill that I have never seen or heard of anywhere else. Bill could not have survived as long or with as good a quality of life as he did without the very special care he received from these extraordinary people.

As Bill's heart failure progressed his doctors tried a Primacor infusion pump, which wasn’t enough. So the medical team fitted Bill with an LVAD (Left Ventricular Assistance Device), a type of heart pump, while he awaited a heart transplant. We opted to be a part of an experimental group of patients using the Duraheart LVAD--the newest pump available, and Dr. Camacho, a team surgeon, implanted the LVAD in November 2010.

To compound his medical issues, on January 31st 2011, Bill had a stroke, the first of three he would have in a period of two weeks. Bill appeared to completely recover from the first two strokes and was partially recovered from the third, but his LVAD had filled with blood clots and needed to be exchanged. When Dr. Simsir, a surgeon on the Newark Beth Israel transplant team, told me what was needed, he also said such surgery, was risky. Undergoing open heart surgery is not normally done until at least six months after a stroke. But, when Dr. Simsir told me that he would opt for this surgery if his own loved one were in this position, and knowing that no one on the entire team disagreed, we were confident that the surgery was the right choice. So, Dr. Simsir performed the surgery on February 13th and replaced Bill’s Duraheart with a Heartmate II LVAD. Dr. Simsir discovered then that the strokes were caused by a failure of the device and not by a failure of Bill’s body. There was a kink in a flow tube that pooled blood which created the clots. It was a chance happening. Over the next two days, further surgery was required to remove blood clots from Bill’s chest. These were not easy surgeries, and the recovery was complicated, but they saved Bill’s life.

Following the LVAD exchange, Bill spent nearly two months at Newark Beth Israel, during which time he was paralyzed on his left side and had dysphagia which prevented him from swallowing thin liquids. He aspirated and was fitted with a feeding tube. He barely spoke. He regained movement slowly, first in his leg and then his left arm moved ever so slightly. After his discharge from the hospital he spent another month in inpatient rehab at JFK Johnson. While he received treatment, I learned how to transfer Bill in and out of his wheelchair, so I could care for him at home.

Bill came home a week before his 70th birthday, and despite my training, I needed help caring for him at home. Friends came over to help me carry him up and down the outside stairs in his wheelchair when he went to the doctor and three therapists and a nurse came to our home for four months. Then in July, Bill aspirated and Dr. Casella and I agreed we wanted him to get Vitalstim Therapy which was only available as an outpatient. At this point, Bill was able to use his walker with assistance and to climb the outside stairs at our house. So, he began another round of rehab as an outpatient in Newton, going five days a week for three therapy modalities. When Newton felt he couldn’t progress beyond walking with a walker, and I disagreed as I saw he was ready to begin working on his balance, I switched his treatment to Kessler Rehab in Chester.

During the time that Bill was receiving treatment for balance at Kessler, he began to blossom. In addition to the outpatient therapies, he worked a lot at home. To make this easier, we turned our living room into our own rehab center. We had a NewStep recumbent cross-trainer stepper with 10 levels that Bill used most days, and he progressed from level 1 for 15 minutes to level 4 for an hour. We had parallel bars, which he used to practice walking hands-free. We were preparing to install a partial weight bearing rig so that Bill could start walking freely and safely on a treadmill. And we had just received his new center-positioned walker which would have allowed him to walk alone. With all his effort, Bill’s balance was rapidly improving, and he was beginning to do standing activities, like washing and drying his hands. With these improvements in his abilities, he was also becoming very confident and strong.

On Friday, November 25th, Bill graduated from speech therapy, where he was being treated for swallowing--he was able mostly to swallow thin liquids again.  We went out to celebrate this milestone in his recovery, and he wanted to eat at a sushi restaurant. We almost chose another place; we almost just went home to eat and watch a cooking show. We almost avoided what happened. Bill even second guessed me and almost picked Mexican. I almost let him; but he really wanted sushi. The food turned out to be tainted. I only got a little sick, but Bill became severely sick as a result of where and what we ate, and in a cruel twist of fate, a severe bout of food poisoning did what heart disease and stroke couldn’t do, which was defeat this strong and wonderful man. His indomitable spirit was not enough to fight the effects of the poison on his weakened body, and we lost Bill.

In another cruel twist of fate I got a letter in the mail the day after Bill’s death telling us that he was approved by his insurance company to receive a heart transplant as of November 18th. Dr. Zucker must have reinstated him on the active list of patients scheduled to receive a heart transplant. He spared me that knowledge in the hospital. The one consolation I feel is knowing that the heart that would have been Bill’s will go to another needy person and another family will get to experience the relief and joy we had hoped for.   

***

A week before Bill died, I happened across the song by Spanky and Our Gang called Sunday Will Never Be the Same. I remember thinking how I wanted to just get it out of my mind. But it got stuck, you know, how that sometimes happens? I hummed it and sang it and Bill remarked, "You have such a pretty voice." And then on Sunday he left us. Sunday may never be the same for me. But none of us will be the same for having known Bill. Bill changed us all.


video


I remember Sunday morning
I would meet him at the park
We'd walk together hand in hand
'Til it was almost dark
Now I wake up Sunday morning
Walk across the way to find
Nobody waiting for me
Sunday's just another day
Sunday will never be the same
I've lost my Sunday-song,
He'll not be back again
Sunny afternoons that make me
Feel so warm inside
Have turned as cold and grey as ashes
As I feel the embers die
No longer can I walk these paths
For they have changed
I must be on, the sun is gone
And I think it's gonna rain
Sunday will never be the same
I've lost my Sunday-song
He'll not be back again
I remember children
Feeding flocks of pigeons
I remember sunshine
And you were mine
Sunday will never be the same
I've lost my Sunday song,
He'll not be back again

Special thanks to Barbara Klipper for her editing.

2 comments:

  1. An interesting article in AARP Bulletin regarding the Thoratec LVAD:

    http://www.aarp.org/health/conditions-treatments/info-12-2011/heart-pump-helps-those-with-heart-failure.html

    ReplyDelete

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