The Confident Traveler

We recently asked our COPD community on Facebook if there were any symptoms that took them by surprise. Many respondents answered that they were surprised about how COPD has affected every aspect of their lives. They did not expect that so many symptoms would not be directly related to their breathing. One eloquent member summed it up thus: "There's not one aspect of my life this horrid disease hasn't touched and I never felt it coming." Some experts refer to these non-respiratory symptoms as "extra-pulmonary" or "systemic" effects1 They are not sure exactly what causes these other effects, but suspect that there may be a number of interrelated factors, including:1 inactivity systemic inflammation lack of oxygen to the cells and tissues oxidative stress Let's take a closer look at some of these other symptoms. So much pain Quite a few people mentioned the pain that often seems to go along with COPD. To be honest, I was a bit surprised about that symptom. In the 4 years I cared for my mom before she passed away, she never complained of any kind of pain, other than when she had a compression fracture in her back. And that seemed more related to her severe osteoporosis than to COPD. Perhaps she was just lucky. But pain is a very real symptom of COPD. Most people seem to complain of rib pain and/or pain in the chest wall. At times, it feels more like pressure in those areas, while some people experience sharper pains that come and go. Some people describe it as "rib cramps."2 Others say they have upper back pain. Studies have found that as many as 44 to 88% of people with COPD may report chronic pain.3 The exact reason for pain in people with COPD is not entirely clear. In some cases, it might be related to coughing, especially during exacerbations. Experts also theorize it could be related to hyperinflation of the lungs. This is what occurs with the damage to the alveoli in the later stages of COPD.3 This hyperinflation probably: presses on the ribs strains certain ligaments puts undue force on the joints in the chest, rib and back areas causes problems with posture increases the work of breathing Depression and being sedentary may also play a role in chronic pain, although more study is needed in this area. Unending fatigue It's easy to understand how COPD can sap your energy. When it takes tremendous energy just to breathe, there may not be much left over for anything else. But there may be more factors in play when it comes to your fatigue. For one thing, you may not be sleeping all that well. It could be that your cough gets worse during the night. Or maybe it's harder to breathe when you lie down. The result can be that it takes longer to fall asleep, you wake up a lot and you rise earlier in the morning. Whatever the reason for disruptions to your sleep, the bottom line is that your body needs rest. So if you don't get it, you may never quite recharge your batteries. Also, muscle weakness is common when you have COPD. This is often due to a lack of activity. But what comes first? Have your muscles gotten weaker because you sit around too much? Or is it that you sit around because you don't have the energy to move much? Chances are, it's a little of both. Also, when you have trouble breathing, you may not be bringing enough oxygen into your body, which can lead to muscle fatigue and weakness. Other physical effects Besides the pain and fatigue, there seem to be a number of other systemic effects linked to COPD, including:1,4 Cardiovascular effects (2-3 times as likely in those with COPD as compared to the general population) Alterations in the nervous system Loss of bone mass, i.e., osteoporosis Nutritional deficiencies, including anemia and low body weight Brain fog Mental health effects Depression and anxiety are known to be linked to COPD.5 I certainly observed those effects in my mother before she passed. It may be obvious why people with COPD could be anxious and/or depressed. However, experts are not really sure what the exact link is between these disorders and COPD. The widespread inflammation in the body might be a factor. At any rate, we do know that depression and anxiety can lead to:5 fear, panic, and hopelessness low self- esteem social isolation dependency on caregivers And all of those can be a vicious cycle that just keeps repeating and worsening the effects. Social effects of COPD Lastly, COPD can bring about enormous changes in everyday life over time. You may have to stop working because you can no longer carry out the duties of your job or career. You may spend more time in your home, because it takes too much energy to get out, especially in social situations. You may find yourself becoming more and more dependent on others. People with COPD typically need emotional support6, but may not always get as much as they need. There can be many reasons for this: Social isolation Lack of understanding about the disease from significant others Depression and anxiety in the COPD sufferer If you have COPD or care for someone who does, it's smart to be aware of these more generalized effects, so that you can address them. Also, talk with your health care team. They may have suggestions or be able to prescribe therapies that will help in some cases. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] I have been quite happy with my general practitioner handling my COPD. On one visit he decided I should have a pulmonologist. He explained they keep up on new medicines and techniques, and with my severity, it might be a good idea. I love my doctor, but I begrudgingly agreed. My first visit Off I went to my first visit. I liked him well enough and pretty soon we were discussing my various options moving forward. First, we talked about lung volume reduction surgery. This is a procedure designed to help you breathe easier when your lungs have been damaged by severe COPD. The goal of the surgery is to remove the area of the lung most affected by the disease. This allows the lung to function more efficiently, and improve your ability and quality of life.1 We also discussed the Zephyr Endobronchial Valve System. This is an implantable bronchial valve used to reduce the over-inflation of the lungs due to severe emphysema. The device consists of a one-way duckbill valve attached to a nickel-titanium self-expanding retainer that is covered with a silicone membrane.2 After my doctor reviewed my recent X-rays and scans, I was told neither would be an option for me. The emphysema is fairly evenly spread out throughout my lungs, therefore there isn’t enough good lung available in one space. He said he felt I was a good candidate for a lung transplant and wanted to set up an appointment with one of the Boston, MA hospitals. This took me completely by surprise. I had not considered this option and what surprised me more, it upset me. I didn’t consider myself a transplant patient. My lack of knowledge concerning them led me to believe because I was only on 2 liters of oxygen and functioning around my home, I was not severe enough. The interview appointment Within a few months, I had an appointment with The Lung Center at Brigham and Women’s Hospital in Boston. First I had to complete another twenty-one sessions of pulmonary rehab and a more recent CT Scan to bring with me. The Center was impressive and I was put at ease immediately. My husband and I spoke with several doctors and watched a rather long video explaining what to expect. It was certainly an eye-opener. After much discussion, the doctors said they would continue working with me, but I had to lose sixty pounds. They also felt losing this weight will make a considerable difference with my breathing and a transplant may not be necessary then. So far I’ve lost ten pounds. It is coming off slow. My next appointment was in three months. That gave me ample time to read over the large packet of information and make a decision. I think I already knew before leaving the hospital my decision, but it wasn’t final yet. I did a great deal of reading, research, and joined an online community with others considering a transplant or recipients. The decision About two weeks before my next appointment, I canceled it. I made the decision not to continue on with the process. Here are the reasons why: Burden on others It requires an incredible amount of help from other family members and/or friends during the recovery process, as well as being involved during the evaluation. Since each patient is very different, it is unknown just how long the recovery will take. There are routine visits to the hospital before and after the process. I no longer drive, so that burden is put on my husband or another family member. My son lives out of state, as do other family members. Friends that are close by are dealing with their own health issues. Beyond my own husband, I felt the time involved was a lot to ask. Each visit would probably be an all-day affair. Fear of rejection The fear of my body rejecting the lung is considerable, either immediately or down the road. I know there are medicines to help a patient through it, but I truly don’t know if I am willing to. Emotionally, I don’t deal with being ill very well. My two month hospital stay and long recovery took its toll on me mentally. At this time I am managing my COPD disease with the help of my husband. In many respects, it seemed like I would be trading one disease for another that required even more time and management. Medication side effects The possible side effects of all the medicines. Steroids are one of the medications and most of us that have had exacerbations know what steroids are like. Not only do they weaken the immune system, but the anti-rejection drugs may as well. Many recipients develop other issues, like kidney disease, diabetes, or an increased risk for cancer. Again, would I eventually be trading one disease for another? Insurance considerations My medical insurance would cover most, if not all the cost of the actual transplant. However, I know what insurance companies are like here in the United States. I have been on medicines for years and they suddenly decide to switch it to something else or not cover it. My doctor is very good at fighting them for me, but what if it doesn’t work? My husband and I are on Social Security and cannot afford the possibility of expensive medicines or co-pays. Acceptance Having a transplant is a very personal decision, and not one to be taken lightly. It is a long process, with a great deal of medical testing that is done before acceptance. For some people, their health has declined so much it is an easy decision. For others, their religion factors into it. At this moment, I am on 2 lpm of oxygen and life is manageable. I am working on losing the weight the specialists told me to. For now, I am at peace with my decision. What are your thoughts on the subject? Would you get a lung transplant, or have you had conversations with your doctor about it? Editor's Note: We are heartbroken to share that Carol passed away in February of 2022. Carol's storytelling and advocacy will be deeply missed, but her legacy lives on through her articles and in all the people she inspired. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] I’m told that quote is attributable to the late Catholic missionary – Mary Teresa Bojaxhiu, commonly known as Mother Teresa. She is now a Catholic Saint. What extraordinary words. What do they have to do with COPD? What needs encouraging? I was having coffee with a friend in town, “T.J.” (Thomas John) who also has COPD. He’s a little more advanced than me but I’m not far behind. He brought up Mother Teresa’s words when we were talking about “encouragement.” We were discussing encouragement specifically in the context of COPD. How can we encourage each other? I think much of it depends on what needs encouraging. Are we having a bad day? Has our breathing gotten worse? Have we lost all desire to share stories - to eat – to socialize? What keeps some of us going and what stops others from trying? The power of encouragement I’m a big believer in encouragement. I got a lot of it as a kid from my family when it came to schoolwork, music (I’m a guitar player – first one in the family), cloudy days – a whole host of things where I wasn’t feeling particularly sure of myself about whatever it was I was trying to do. T.J. had been a tremendous athlete in high school and college and continued to play basketball for his company’s team. He said he and his teammates would “psyche each other up” before, during and after games. For those younger than 60, to psyche someone up was to encourage them with great enthusiasm. “If I was getting the right kind of encouragement, I could hit a shot from way downtown,” T.J told me, “And I would get nothin‘ but net.” Lessons learned If I’m honest, (I think I am), there are times when I’ve taken advantage of the kindness offered to me when I’m having a bad breathing day or an exacerbation or just a generally blah kinda day. “Oh yes...I’d love another glass of wine. You’ll get it for me? Aren’t you the sweetest!” “If you’d like to bring it here that would be terrific!” “No...I don’t mind if you want to fluff up that extra pillow.” I’m exaggerating a bit but...not too much. What T.J and I agreed on before parting was that it has to be very difficult to see a loved one hampered by the effects of COPD. I’m not going to say "depressing" although there’s a good chance that it is. And yet, on the other side (and we both agreed) there are days we could use tons of encouragement and it doesn’t seem to be forthcoming. I’m not sure why. I’d like to think of myself as showing appreciation. I’m pretty sure I do. And yet, I sometimes see “eye-rolling” when I’ve asked if someone could get me something. Not blatant, mind you but – it’s there. I’d like to think that I’ve followed Mother Teresa’s advice. I honestly think I have – even before I saw it written down. But we can all do better at being kinder. I know I can. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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