Wednesday, October 15, 2014

BREAKING NEWS: A CURE FOR COPD


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

MAKING LEMONADE


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

YOU CAN'T PLAN LIFE


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.



Wednesday, February 5, 2014

ANXIETY



I suspect that I’m not the only person with COPD who suffers from anxiety. My anxiety pre-dates my COPD, but my COPD has definitely exacerbated it. Last summer after Gordon died I saw a psychiatrist and, in addition to talking with me, he prescribed a small amount of medication to help me sleep. Just last week I also started a class on Mindfulness Meditation.

Before COPD the most frequent trigger for my anxiety was a fear of being late. I even had one or two recurring bad dreams about it. The way I coped was always to plan to be early. At work, for example, I always planned to finish my projects at least a day ahead. That way, if the unexpected happened, I still wouldn’t be late.

Fear of not getting somewhere on time, however, was a more frequent trigger, so I always planned to get to my appointments early. Getting to the airport on time was so important to me that, if I could arrange it, I’d plan a meal in the airport before my flight. That way the worst that would happen if I were late was I’d miss my meal.

My initial Alpha-1 COPD diagnosis increased my anxiety levels a little I’m sure. Then, when I went on oxygen to fly, to sleep and to exercise they went up a little again. But the big bump came only when I went on oxygen 24/7. Until then, if I’d run out of oxygen for a short while, I could have adjusted; I would have been OK. That’s no longer true; one of the reasons for the increase in my anxiety.

By way of example, I’ll tell you what happened to me last Tuesday.
I filled up my portable oxygen unit at 1 PM. From past experience, I was sure that it would last me at least until supper. I live in an apartment at Glenmeadow, a not-for-profit that provides apartments and services for seniors. I left my apartment, walked to our gym, and worked with our trainer for about 45 minutes.

Following, I collected my mail and then went to the cafĂ© for a cup of coffee and conversation with friends. About a half hour later I suddenly sensed that I wasn’t getting any oxygen. I quickly checked all the tubes to see that they were properly connected. Thankfully there were staff members close by. I called one over, explained the situation, and asked her to go to my apartment and retrieve another small portable oxygen unit that I keep on hand for emergencies. She agreed.

While she was gone, I sat quietly in my seat. I knew that, without talking or moving, my oxygen levels wouldn’t fall very fast. When she returned, I quickly turned on the portable oxygen unit she’d brought me and, after a minute or so, confirmed that my oxygen levels were fine. Then I finished my coffee and conversation and had a friend walk with me and carry my non-functioning portable oxygen unit back to my apartment. What would I have done if I were in my car all by myself? I guess I would have called 911.

The other reason for the increase in my anxiety is how long it takes me to leave my apartment. Before leaving, I have to switch to a portable oxygen unit from the oxygen concentrator that I use in my apartment. That involves first filling my portable unit with oxygen, turning it on and checking that oxygen is flowing through the tubing attached to it and then putting the cannula on the end of that tubing into my nose. Finally I have to carefully roll up the cannula and 50 feet of tubing that connect me to my concentrator and allow me to move freely around my apartment. Only when that is done can I shut off my concentrator and go.

In addition, every day when I go out of my apartment I have to plan where I am going to go and how much oxygen I will need. If I’m planning to do something active, I will need more oxygen than if I’m planning to be sedentary. And you will probably not be surprised that I usually plan on having more oxygen than I will need, even if it means having to come back to my apartment at some point to refill my portable.

My point here is not to have anyone feel sorry for me. It is what it is and I’m doing my best to live with it. My point is that this is what thousands of people with COPD live with every day. In addition, many, if not most don’t have the resources I do. Even if they weren’t plagued with anxiety before their diagnosis, chances are they’re plenty anxious now.

Unfortunately, from what I’ve read, there is no quick fix for anxiety. Nor is there a fix that works for everyone. There’s a plethora of medications are out there. Others claim that talk therapy, exercise and/or meditation are the answer. I’ve personally found some relief from all of these approaches. In addition, I’ve recently learned that I’m actually one of the lucky ones.

I’ve been reading a recent book, “My Age of Anxiety - Fear, hope, dread, and the search for peace of mind,” by Scott Stossel. In addition to providing a historical context for his subject, Mr. Stossel describes his own life-long battle with anxiety. That description and his description of similar life-long battles fought by past and present luminaries in sports, the arts, science and politics really opened my eyes. I am not alone. In addition, my anxiety pales in comparison to what some of these people deal with on a daily basis. 

If you have COPD and you suffer from anxiety, you are not alone either. There are thousands, perhaps hundreds of thousand of us out there. Equally important, if you haven’t already and can afford it, get help. Finally, I recommend Mr. Stossel’s book. Hopefully it will put your anxiety into perspective and provide you with ideas on how to help yourself.








Saturday, January 25, 2014

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.