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Steve Portnoy 1945-2014

Obituary letter written by his wife Norma

Dear family and friends,

I write this message with a very heavy heart. It is with extreme sadness that I tell you that my dear husband of 39 years died yesterday. Steve put up a valiant effort for the past two and a half years as he fought against the progressive and devastating effects of an autoimmune disease called dermatomyositis.

A memorial service will be held for Steve this Thursday, Sept. 11 at 5:00 pm at Congregation Har Hashem, located at 3950 Baseline Road in Boulder 80303. The Temple is a half mile east of the Boulder Turnpike. If you’re coming from Denver, please know there is a lot of construction on the Turnpike and you’ll want to allow extra time. It’s Boulder – so casual dress is fine. The service will include songs, prayers and stories about Steve that you can feel free to share.  Light refreshments will follow the service.

Some of you may know much of the information below already, but I have included more information rather than less for those of you who don’t know.

Dermatomyositis is a disease that attacks the muscles and lungs. It caused lung disease and scarring of his lung tissue. Symptoms included a dry cough and shortness of breath. Technically he died of viral pneumonia, which was caused by a common cold virus that settled in his lungs. The dermatomyositis and the multitude of medications that he was on (to give him any quality of life) made him immune-suppressed and thus, a common cold which any one of us could fight off, instead became life-threatening for him. They also believed he may have had other infections or conditions, but that wasn’t confirmed by the lab by the time he passed away.

With this disease, inflammatory cells surround the blood vessels and lead to degeneration of muscle fibers. Progressive muscle weakness tends to worsen. He also had Raynaud’s and Sjogren’s Syndrome. He was very weak.

He entered the hospital on Monday, August 25 after falling in the house and not being able to get up. The fire dept. came to the house to get him off the floor and after finding that he couldn’t walk or stand, they took him to the emergency dept. That was 13 days ago and he never left the hospital. He went through a series of tests, was seen by every specialist known to mankind, was served by PTs, OTs and speech therapists, and was served by talented and compassionate nurses in an extremely well-run hospital that thinks of the patient and family at every turn.

In the end, it wasn’t enough and his body could not rally. Some of you know that Steve has been ready for this transition for the last two years. When he first got sick more than two years ago, we thought we were going to lose him. His quality of life over the past two years wasn’t great as he fought through this condition, and we are glad he can finally rest.

He had been on oxygen since entering the hospital but this past Wednesday morning, he had a high fever and was unable to get enough oxygen into his lungs despite having a mask on his face to draw in oxygen. They transferred him to the ICU.

Thursday morning he went into distress, unable to breathe, and was intubated to enable a ventilator to do the breathing for him. With Rob living in China, we rushed him home so he could see Steve before he passed away.

He was on the vent Thursday, Friday and yesterday morning. Yesterday we met with his doctors who told us that it was extremely unlikely that he would make it, and if he did, he would be so compromised by this progressive disease and his hospital stay that he would live the rest of his days in a nursing home. We knew that he would never want that for himself or for me. He had made it clear, both verbally and in writing, that he did not want to be kept alive on life support machines or if his quality of life would be poor.

Scott, Rob and I did a lot of talking with a hospital chaplain, the docs, and nurses, and we made the decision to remove the intubation tube. The thought was that he would either be able to breathe on his own, which would take us down a path of recuperation, rehab, etc…..or he would expire. When we returned to his ICU room to inform the nurse that this was our decision, she told us that he had already begun the process of dying on his own. His numbers were becoming dangerously low in terms of his ability to draw oxygen into his lungs to survive, even while being on the machines.

So, at the end, Steve made it easy for us. There was no decision to be made.

The boys and I each took private time with Steve to say our goodbyes. The respiratory therapist removed the breathing tube and the nurse administered morphine and other drugs to ensure that Steve would not feel any pain or discomfort as he passed away. He took a few last breaths and expired very quickly within minutes……with absolutely no pain or discomfort.

Scott, Rob and I were at his side as he passed and we comforted him. Although heavily sedated, there is no doubt that he heard us as we spoke to him, evidenced by certain movements he made. Clear as day. It was amazing. The boys and I are so grateful that we were able to help him during this transition. We know it made a difference to him and I encourage you to do the same for your loved ones when the time comes. 

I also encourage everyone to complete Five Wishes, a form which clearly spells out important end-of-life information for your survivors and medical professionals. The lung doctor told us that Steve gave us a gift by having completed the form because he made the decision about his end of life and that we were only his agents, not the decision makers.

Now onto the process of long-term grieving, the necessary logistics after someone has died, and returning to living for the boys without their father and me without my partner.

For those interested in making a donation, in his 5 Wishes, he stated that his preference is a children’s hospital, specifically earmarked to help infants and young children.

Per his 5 Wishes, the way he wants to be remembered is that he loved his family very much. His entire career was in health care. For anything he did, he always tried his hardest to do the best. He loved making people laugh and making people happy. It was his mission in life. Even as a 5-year old lying in bed in Boston’s Children’s Hospital, paralyzed with polio, he told jokes and read comic books to the 3-year old and 1-year old patients in his polio room. As a 15-year old, he volunteered on Saturdays at the Children’s Hospital going from room to room, doing whatever he could to make the kids laugh.

Losing a loved one is hard. However, I hope that Steve’s life will continue to make an impact by his friends and family exemplifying his best qualities: caring for those around him, making people happy, and involving humor in life, as he couldn’t help himself but to do so. 

The boys and I will spread his ashes in Estes Park, our favorite mountain town about an hour from home.

Best to everyone,

Norma

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