OFF THE DEEP END

Sorry about the delay. Family and holidays took priority. Now that things have quieted down, I’ll pick up my story where I left off.

On our way home from Brigham and Women’s Transplant Center on July 10, Maura took me to a Tempurpedic store nearby. I merely wanted to check out a Tempurpedic adjustable bed and mattress so that I could compare them with competing products sold closer to home. Before I left, however, I almost bought a Tempurpedic bed and mattress on the spot.

Even though I’d left the store empty handed, I simply couldn’t get that Tempurpedic adjustable bed and mattress out of my mind. So a day or two later I found a Sleepy’s store nearby that sold the identical bed and mattress got Maura to agree to meet me there. My intent, or so I told myself, was merely to compare that Tempurpedic bed and mattress to other Sleepy’s beds and mattresses. Before I left, however, I’d spent $4,000 on that Tempurpedic bed and mattress.

I’m not an impulsive person. I also know that one should try to avoid major decisions immediately after life crises. So what came over me? In retrospect, I realize I was in shock. My whole world had crumbled, or so it seemed at the time. My glass was almost empty and I simply grabbed hold of the first thing that I thought would fill it up again.

A few days later, Sleepy’s set up my new Tempurpedic bed and mattress in my bedroom. That first night, bursting with excitement, I climbed up on my new bed and tried out all the controls. Then I settled down for a wonderful night’s sleep. Instead, I barely got any sleep because a distinct odor emanating from the mattress kept waking me up.

Needless to say early the next morning I called my sales person to complain. First she told me that such odors are common in new mattresses. Then she told me her time-tested solution. Put a plate with a cut-up green apple on top of my mattress and a few Bounce dryer sheets underneath. Then air out my bedroom for a couple of days and the smell should be gone. She assured me that even though it sounded crazy, it would work.

By this time I was a basket case. My other daughter, Shannon, came over and put three cut-up green apples on plates on top of my mattress. Then she put over a half box of Bounce dryer sheets underneath. Finally, she put two fans in my bedroom windows set to blow out instead of in. For the next week I avoided my bedroom as much as I could. I slept on the couch.

One week later, Shannon took away the fans, the dryer sheets and the apples. She then remade my bed. That night I tried to get excited again about sleeping in my new bed. It didn’t work. More important, I still didn’t sleep very well; I tossed and turned all night.

Then and only then did it finally dawn on me that I’d always slept on a medium firm or firm mattress whereas my new mattress was medium soft. That was because both sales people had convinced me that it was the most popular mattress for my Tempurpedic adjustable bed, ergo I’d concluded it would be the best mattress for me.

Thankfully my mattress could be exchanged, but only after thirty days. So for the next three weeks I slept on the couch. Then I exchanged my mattress for a firm one.

In the meantime, I’d also discovered that I wasn’t as happy with the adjustable base as I thought I would be. I preferred my old bed. Under the terms of the sale, however, I was stuck with the adjustable base. So I had Glenmeadow set up my old bed in my bedroom and the Tempurpedic one as a guest bed in my study.

Six months have now gone by and I’m still happy in my old bed. But I have yet to have company to enjoy my new guest bed. In other words, I had an expensive lesson. On the other hand, my new guest bed will come in handy when I first come home after my transplant and have to have someone live with me 24 hours a day. And who knows, maybe one day I’ll even decide I like it.

Looking back, I call last summer my crazy period. After the shock of Gordon’s death, the news that I probably wouldn’t be getting a transplant any time soon was more than I could bear and it sent me off the deep end for a while. But I’m back now. In fact, I’m in the process of trying to increase my odds for a transplant by getting double-listed. More about that later.

 

A DOUBLE WHAMMY

Those who know me well know that my glass is nearly always half-full. My theory of life is that if something bad happens, take time to grieve and then get on with you life. Even though you may not always see it at first, there’s usually another road to take and that road may even be better than the one you were originally on.

So it should not be surprising that not long after Gordon’s death, I convinced myself that, with Gordon gone, I would now get a lung transplant. And that lung transplant would lead to a whole new life, and so on, and so forth.

That positive thinking really helped me for a while. It gave me the necessary motivation to recover, to get my strength back and to get back on the transplant list. Three days a week for about six weeks I worked with a physical therapist and in between I exercised by myself.

My first big test was on Friday, July 5, when I went to the pulmonary rehabilitation center at our local hospital to do a 6-minute walk. In order to get on the list, or in my case to get back on the list after my hospitalization, you have to be able to walk 500 feet or more in six minutes. On that day I walked 800 feet!

My first visit to the Brigham and Women’s Transplant Center after Gordon’s death was on Wednesday, July 10. Coincidentally, that day I’d been scheduled to meet with Dr. Goldberg, the Transplant Program Director. After first examining me and asking me a series of questions, she said we were all set for another few months unless I had any questions.

And then it happened! I opened my mouth and asked Dr. Goldberg what priority I had on the transplant list. Her answer was, “No priority.”

Somehow I’d always known it, but it had never been spoken of so directly. In comparison to persons with every other lung disease, research shows that those of us with COPD, Alpha-1 and not, live longer pre-transplant. And that research is the rationale behind the 2005 UNOS lung transplant guidelines. Everything else being equal, UNOS guidelines give priority to those with all other lung diseases over someone with Alpha-1 or COPD.

For those of you who don’t know, UNOS is the United Network of Organ Sharing and it sets the guidelines for all lung transplants within the United States. In other words, UNOS sets the rules as to who get a transplant and who doesn’t and Brigham and Women’s Lung Transplant Program and Dr. Goldberg merely follow them.

Put simply, because I’d asked the question directly, Dr. Goldberg gave me the only answer she could. Only two things could help me get a lung transplant; getting much sicker or sheer luck. Sheer luck is usually when someone above you on the list gets a single lung transplant and you get the other single. But according to Dr. Goldberg, as of right now they weren’t willing to give me a single because in addition to COPD, I also had Bronchiectasis.  

Desperate, I now asked, “But what about survival? Isn’t expected survival supposed to be part of the equation, not just how soon you will die?” Yes, Dr. Goldberg replied, survival is part of the equation. But then she said that other research showed that Alphas post-transplant survival statistics were not any better than those of any other lung disease. Boldly, I told her that I’d recently read about a study that said it was and she asked me to share it with her if I could find it.

Thankfully, my daughter, Maura, and my stepdaughter, Rebecca, were with me that day. As soon as my appointment was over, we left to get a bit of lunch even though I wasn’t sure I could eat. I was so anxious I was literally shaking. An earthquake had shattered my glass half-full.

It was now a month since Gordon’s death and I had no game plan. But those who know me well know that I can’t live long without a game plan. So while we were having lunch, I made a new game plan. I’d buy a Tempur-Pedic adjustable bed. I’d sleep better; ergo I’d feel better.

GORDON'S DEATH

It’s been almost five months now since Gordon’s died and, in some ways, my life still seems surreal. When I last saw Gordon, we had aides with us around the clock. When I last saw Gordon, his son Barry was also staying with us. When I last saw Gordon, our apartment was a repository for his medical equipment and drugs.

I last saw Gordon on Friday morning, Jun 5, 2013. Early Saturday morning, June 6, Barry notified me by text that he had died. I knew it was coming. Gordon had been completely unresponsive the last twenty-four hours before I’d left him. But somehow because I wasn’t there, even though I knew he had died, it didn’t seem real.

To further compound the matter, when I got home ten days later, not only didn’t I see Gordon, but also our apartment was stripped bare of all of his medical equipment and drugs. It was as if our life together over the last twelve years had suddenly vanished into thin air.

I certainly didn’t choose for our life together to end this way. I just didn’t have a choice. For the last three or four weeks I’d known he was dying and I had every intention of being there when he did. But as I have learned painfully over this past summer, there are some things in life over which we have no control.

About two or three weeks before Gordon died, I’d come down with a respiratory infection. I’d immediately gone on antibiotics and thought I was getting better. But then I began to get worse; a recipe for disaster for anyone with severe Alpha-1 COPD. So early on the morning of June 7, I called 911.

Gordon and I had already said our good-byes a few days earlier. I’d also written out detailed instructions for Barry and our other children. So, after checking my vital signs and hooking me up to their oxygen, the EMT’s put me on a stretcher. Then they wheeled me past Gordon’s room and I blew him one last teary kiss.

I knew I had to do it. I also hate to think what could have happened to me if I hadn’t. But it was hard.

As I had suspected, I had a severe case of pneumonia and I was hospitalized for eleven days. It’s the longest I’ve ever been hospitalized and yet another sign of the deterioration that Alpha-1 COPD has wrought on my body.

Was it because I was so sick myself? Or was it simply because I wasn’t there? I knew that Gordon had died. I had even spoken with other family members and the Rabbi about his memorial service. But somehow it wasn’t touching me. It was as if I was in a protective cocoon.

My cocoon also traveled with me when I first went home. Yes, Gordon wasn’t there. But neither were his hospital bed, his motorized wheelchair, his hoyer lift and the rest of his medical equipment. It was as if I was returning to an apartment where Gordon had never lived.

Of course there were pictures, memorabilia and Gordon’s clothes. In addition, his memorial service was almost upon us and I had decided to write my own personal tribute. But even as I was writing, it was as if I was playing a role in a play about someone other than Gordon and me.

My first week home I was still sick and extremely weak. But we’d already set Sunday as the date for the memorial service and out-of-town family and friends were arriving on Saturday. So on Saturday I “entertained” from the couch. And I went to the Temple on Sunday in a wheelchair.

That Sunday was a long day. It began with Gordon’s memorial service at 11. All present were then invited to pay their condolences to the family at a luncheon reception immediately following at Glenmeadow. When it was time for the evening Shiva, only a few close friends and family remained.

That Sunday, June 23, 2013, was unquestionably the hardest day of my life. Gordon’s memorial service was beautiful and family did their best to surround and shelter me. But that Sunday there could be no more pretending. That Sunday we were all gathered to honor Gordon and to say goodbye to him for the last time.

From Gordon’s death until that Sunday I’d been living in an unreal world; a world in which Gordon wasn’t physically present but I hadn’t acknowledged that he was gone. That Sunday reality clobbered me. But it was painful and so, not surprisingly, I quickly slipped back into my unreal world.

A DETERMINED MAN - PART II

Gordon was transferred to Spaulding Rehabilitation Hospital in Boston only three days after his stroke. Every morning, for the next six weeks, he spent with a myriad of physical, occupational and speech therapists. I spent my mornings trying to figure out how we would cope when Gordon came home. Afternoons we spent together.

Before spending the afternoon with Gordon, however, I usually had lunch in Spaulding’s cafeteria. Likewise, on my way home, I usually stopped at Whole Foods to pick up my supper. I had neither desire, nor energy to cook for myself. Everything within me was focused on Gordon.

From his first day at Spaulding, Gordon was really focused on regaining his speech. Every afternoon he practiced by reading lists of words aloud to himself over and over and over again. But all that practice paid off. I’ll never forget the day he abandoned the word lists and read the New York Times aloud to me instead.   

Gordon applied that same determination to the task of regaining the use of his right leg. Every afternoon he also did leg strengthening exercises by himself over and over and over again. As a result, within six weeks, he was walking, albeit with the aid of a four-point cane and a brace.

Unfortunately, his determination notwithstanding, Gordon never regained any functional use of his right arm or his right hand. Amazingly, however, he never complained. Instead, he just used that same determination to teach himself how to type and sign his name with his left hand only. 

For most of his adult life, Gordon’s determination to solve the riddles of COPD and Alpha-1 had left little time for family, friends, and other activities. Now, he had all the time in the world and, as soon as he was able, he told me, he was going to put it to good use. He was reinventing himself.

Both Gordon and I loved to travel and one year after his stroke we took our first big trip; a scenic cruise to Alaska. The following winter, we flew to Coronado Island, California, where we spent two glorious months in a condominium directly overlooking the Pacific Ocean. Essentially, from the summer of 2004 to the summer of 2006, we took advantage of almost every opportunity that we had to travel.

Early in the summer of 2006, however, our lives were upended again when Gordon was diagnosed with aggressive B-Cell lymphoma. He immediately had Chemotherapy that killed the lymphoma. But, as a result, he also spent two long weeks in ICU, followed by almost two years of rehabilitation and physical therapy. And this time, despite his best efforts, Gordon would never walk again.

Thankfully, in June 2006, we had just moved to Glenmeadow, a retirement community in western MA. Not only is Glenmeadow handicapped accessible, but also its handicapped vans will take you anywhere you want to go. So Gordon got himself a motorized wheelchair and like my good friend Rita, he just “picked himself up, dusted himself off, and kept going.”

Together Gordon and I went to symphony; we went to art museums; we went out to dinner with friends. We read books, watched movies, and, of course, faithfully read the New York Times. We entertained our children and our grandchildren. We also hosted special events for our extended families. And every year our entire blended family celebrated Passover together, a tradition we have pledged to continue in honor of Gordon.

When Gordon died on June 8, 2013, his son Barry noted that it had been almost ten years to the day since he had his stroke. Never once, during those ten years, did I ever hear him complain about his limitations. Instead, every day he reminded me that life, especially the life that we had together, was far better than the alternative.

Yes, the Gordon I knew was a determined man. He was determined to live life to the fullest, no matter the obstacles, for as long as he absolutely could. Gordon was both my husband and my mentor and I miss him terribly.

A DETERMINED MAN

                             

If I were limited to one word to describe my late husband Gordon, I would call him “determined.” Certainly his career as a pulmonary researcher and physician was marked by his determination to solve the riddles of COPD and Alpha-1 antitrypsin deficiency. Following his death, on June 8, 2013, the Alpha-1 Foundation described his professional contributions, in part, as follows.

“We lost a pioneer and dear friend with the passing of Gordon Snider,” said John Walsh, Alpha-1 Foundation president and CEO. “We all appreciate that he leaves an incredible legacy and we owe a debt of gratitude for his leadership, vision, tenacity, patience and friendship . . . Dr. Snider’s leadership helped the Foundation establish a robust research agenda.”

Bartolome Celli, MD, a professor of medicine at Harvard University and the Pulmonary and Critical Care Division of Brigham and Women’s Hospital . . . quot[ed] the Cuban poet Jose Marti: “The most important signature of a human is his written word and the memory of long lasting friends.” The poet’s words are “applicable to this remarkable man who touched us all. Yes, we lost a friend but his ‘signature’ will last forever,” Celli said.

In a career that spanned more than 40 years, Snider showed how emphysema is created and changed the direction of lung disease research for decades. He founded the pulmonary section of the Boston University School of Medicine and was chief of medical service at the Boston VA Medical Center for 14 years.

He served as president of the American Thoracic Society. He trained dozens of young researchers. He served on the Pulmonary Disease Advisory Board of the National Heart, Lung and Blood Institute of the National Institutes of Health and innumerable scientific committees. And he conducted his own groundbreaking research on lung diseases.

In 2009, the Alpha-1 Foundation presented Snider with a lifetime achievement award at an event attended by more than a hundred of his colleagues and researchers he trained – many of them now leading researchers and clinicians themselves . . . Celli served as master of ceremonies and said, “Dr. Snider is one of those rare giants, a triple threat — a great researcher, a superb caregiver and teacher.”

Gordon officially “retired” in 2000, but that didn’t stop him from going to the office almost every day. He loved interacting with the medical students and residents. It was a mutual attraction I’m told. He also used that time to co-author a number of research papers and, to the best of my recollection, to write at least one long article on the history of lung research. In addition, in his “free” time, Gordon continued as a member of the scientific leadership of both the Alpha-1 Foundation and the American Lung Association.

But Gordon’s determination wasn’t limited to his professional life. When I first met him, he was equally determined to beat what he told me was a genetic predisposition to heart disease on both sides of his family. To that end, he adhered to a strict diet and an equally strict regimen of daily exercise. Then one morning, barely two months after his 81^st birthday, Gordon’s genes finally caught up with him.

That morning I awoke to the sound of Gordon stumbling on his way up the stairs with my morning coffee and paper. Typical physician, he had a ready explanation. I wasn’t to worry he said. An hour or so later, however, he tried to jot down a phone number and his fingers wouldn’t cooperate. This time I called the doctor. She said we should go to the emergency room. Thankfully Gordon agreed.

Unfortunately, Gordon was having a stroke that, over the next twenty-four hours, immobilized his right side and significantly impaired his speech. Surprisingly, however, he wasn’t upset like I was. Instead, his spirits were up. After all, he said, he was lucky to have lived so long without any other major medical problems. 

From that point forward, Gordon never looked back. Our mutual mantra became, “Life’s still worth living because it beats the alternative hands down.” Rather than mourning his life pre-stroke, Gordon developed a two-step plan. First he would work hard to recover as much as he could and then he would reinvent himself. To find out how he did it, you’ll have to wait for my next post, “A DETERMINED MAN – PART II.”