Wednesday, October 15, 2014


Unfortunately this headline is still a dream. But we could help make this dream come true if all of us with COPD sign up for the new COPD Patient Powered Research Registry.

We need more research to find a cure for COPD.
One way is to attract more scientists to study COPD. But we need more money to attract more scientists. In a nutshell, that’s why the COPD Foundation created a Patient Powered Research Registry.

What is the Patient Powered Research Registry? More important, how will it help those of us with COPD find a cure? To paraphrase Bill Clark, Senior Director with the COPD Foundation, its purpose is to establish a ready base of patients interested in clinical trials that will, in turn:

1.   Speed up the development of new medications and therapies;
2.   Speed up new research for a cure;
3.   Encourage increased funding for research; and
4.   Give patients a vehicle to express what research is important to them.

I’ve been a member of the Alpha-1 Research Registry since its inception. Today it has approximately 4500 members, an impressive number considering the size of the Alpha-1 community. More impressive, with this ready supply of Alphas, the Alpha-1 Foundation has raised and invested over $50 million to support research projects at 97 institutions in North America and abroad.

If the Alpha-1 community has been able to accomplish this, just think about what the COPD community would be able to accomplish. Those of us with Alpha-1 COPD represent less than 5% of persons with COPD in the United States. Instead of thousands, there are millions with COPD in the United States today. In fact, COPD is now our third largest cause of death.

So won’t you join me and sign up for the COPD Patient Powered Research Registry? It’s easy. All you have to do is call the COPD Information Line at 1-866-316-2673. Then ask your friends with COPD to sign up as well.

Working together we can make the COPD Patient Powered Research Registry the largest research registry in the world. Working together we can make my headline a reality!

Sunday, October 12, 2014


You probably know the old saying: If life deals you lemons, make lemonade. The concept is simple. It’s the execution that’s sometimes hard and this was definitely one of those times.

When I returned home from rehab after my operation for colon cancer I had yet to regain all of my physical strength. But this didn’t worry me because, with time and hard work, I knew I’d regain most, if not all of it back. What worried me, however, was that I’d lost my emotional equilibrium.

For the past two years, since going on the lung transplant list, I’d kept my spirits up by picturing my new life without oxygen 24/7. Some days I’d pictured myself swimming at a beach or simply walking in the sand along the shore. On others I’d pictured myself canoeing across a lake or playing tennis with one of my grandchildren.  

Looking back, it’s not surprising then that when I arrived home I was both anxious and depressed. I still had severe Alpha-1 COPD, but now I couldn’t have a lung transplant for at least five more years. And, even assuming that my lungs would hold out that long, by then I’d be too old.

My first month home, except for sleeping, I spent most of my time on the couch. Those of you who’ve read some of my earlier posts know that I live at Glenmeadow, a not-for-profit retirement center. As a result, I was able to get all my meals delivered and help when I needed it.

A nurse and a physical therapist also visited me three times a week. The nurse patiently worked with me until I felt confident enough to care for my colostomy on my own. The physical therapist taught me a series of exercises to strengthen my muscles and walked with me in the hall.

Despite all of this improvement, however, that first month was an emotional roller coaster for me. Some days I’d start to feel better. Then, a day or two later, I’d wake up anxious and depressed all over again. Finally, at the urging of my family, I went to see Dr. Cohen, a therapist I’d seen the summer before after my husband Gordon died.

My first visit I asked Dr. Cohen for a prescription for an antidepressant. I’d never taken one, but a number of my friends had sworn by them. Dr. Cohen wasn’t sure that I needed an antidepressant, but he was willing to prescribe a small dose to see if it helped. To this day, I can’t be sure that it actually did.  

On the other hand, what definitely helped was Dr. Cohen’s first response after I told him what had happened to me. He told me that what I was feeling was to be expected after what I’d been through. But with time I’d get through it; with time I’d feel better.

Three months and a number of visits later I can now tell you he was right. I can’t tell you exactly how it happened and I still have some days when I feel down. Gradually, however, I began to realize that even without a lung transplant, I still had a life left to live and only I could decide what to do with it.

Here’s what I’ve come up with. Here’s my lemonade recipe. First, I will spend more time with family and friends. Second, I will spend more time writing. Third, I will spend more time on activities like bridge that I do with others. Finally, I will enjoy each day to the fullest and not worry about tomorrow.

I have stage 4 COPD and I trust there are others reading this who have it as well. Still others may have stage 4 cancer or some other life-threatening disease. What are your recipes for lemonade? I’d love to hear from you.


Wednesday, October 1, 2014


Last March I was feeling pretty proud of myself. I’d just turned 71 and I’d been listed for a lung transplant at Columbia Presbyterian Hospital in New York. I'd already been listed at Brigham and Women’s Hospital in Boston. My odds of getting a lung transplant sooner rather than later had just dramatically increased, or so I believed.

Then my phone rang one midnight in April. It was the head of Brigham and Women’s Transplant Team. She told me she might have some lungs for me. As per her instructions, my two daughters and I immediately drove to Brigham’s Emergency Room. Six and a half hours later, however, we learned that the lungs were no good.

Yes, my daughters and I were disappointed. On the other hand, I quickly convinced myself that this first “dry run” was yet another positive sign. It was further evidence that my lung transplant was just around the corner.  

But the next month I found out I had colon cancer; a 5-cm malignant tumor that my local doctors said had to come out as soon as possible! Because of the condition of my lungs, however, my local surgeon declined to operate and sent me instead to the Brigham.

My first day at the Brigham a number of doctors examined me. Later, after they’d all met, one of the surgeons came and talked with me. She told me that she could operate. Because of my lungs, however, she had to be in and out in less than two hours. That meant I’d be left with a permanent colostomy. I quickly agreed.

The operation was a success. Four days later, I was walking around my room on my own. Shortly thereafter, I found someone to push my oxygen for me and I began walking in the corridor. It would take a week of rehab and six weeks of home therapy, however, before I felt secure enough to take care of my colostomy all on my own. 

While still in the hospital, I called both transplant programs and told them what had happened. Both immediately told me that they would take me off their transplant list. But then they also told me that I wouldn't be able to get back on until I was cancer free for at least FIVE years!

A couple of weeks went by before the full impact of what they’d said finally hit me. My bucket list, all the things I’d looked forward to being able to do after transplant, was of no use to me now. I'd planned for a whole new life after transplant that would never be. Instead, I’d be on oxygen 24/7 for the rest of my life.