Patient Profile - "Jack Straw"
I can’t tell you all how excited I am to be adding this little “twist” to my blogging. One of the things that really encourages my passion for working with lung patients are the people I meet along my journey. I was inspired to feature these folks because they show me each day that the power of positivity and determination to do the things they love goes a long way in accomplishing their goals. So I have set a goal to frequently feature on my blog, people who have lung conditions whom I believe will inspire others with their own story.
I don’t know if any of you have read “Tribe of Mentors” by Timothy Ferriss (available on Amazon for purchase) but last year while my sister was visiting, she introduced me to this book (which I in turn gave to my husband as a gift). The book is formatted by asking the same questions to interesting, successful, and often time famous people on various topics like what inspires them and great advice given to them. You would be surprised how the same few questions can lead a person to tell a unique story of their own. I am using this similar format as I feature new people each time I interview them. Their answers just may inspire you despite the lung condition, to keep striving and moving forward with your own goals. Fair warning: I am trying to post the interviews in their own words, so in order to be as authentic as possible, some of the interviews may be longer than others. Also the opinions, answers, and experiences are unique to the interviewee so as a disclaimer… please consult with your health care provider before engaging in any new diet, drug, or other regimen. I don’t claim responsibility for any adverse effects from information and experiences encouraged by those that are profiled.
First up, my friend “Jack Straw.”
Many of you who are Grateful Dead fans may appreciate when I asked my friend what he’d like to go by, gave me this quick answer. Although, I don’t know much about this group what I do know is that my friend “Jack Straw” is as colorful as the lyrics of the songs that the band wrote. I met Jack about 5 or 6 years ago and we have been good friends ever since. He is a retired teacher and is passionate about politics, history, antiques, weather, the Washington Nationals baseball team, and great food. The friendship was a hit from the get go due to his infinite life experience and quick wit. He was happy to oblige me asking him to be my “guinea pig” for my first patient profile and for that I am extremely thankful. Now on to the good stuff… All About “Jack”
1. Tell us about yourself. (Age? Family? Career?)
I am one month short of 70. I am married and I have a son who is almost 30. I am a retired educator where I worked in education technology as well as taught for many years.
2. What is your lung diagnosis and how did you first learn you had a lung condition?
I think they said it was COPD, but before that I used to have bronchitis because I was a heavy smoker. When I was a kid, I had pneumonia repeatedly and ended up in oxygen tents back in the “dark ages” when they used them. I even had a tracheostomy once when I was a kid due to my windpipe swelling shut. So I had breathing stuff on and off all the time throughout my whole life. My primary care doctor had told me that my oxygen was low and wanted to send me to the hospital but I didn’t want to go. He then showed up at my house later that night with a large oxygen tank. It was bothersome to me when my doctor first put me on oxygen. I didn’t want it. I was self-conscious about wearing it.Eventually, I felt pretty sick and I was having really horrible dreams and not sleeping well at night. Looking back in retrospect it was a combination of having COPD and sleep apnea. I went to an urgent care doctor because I was just a mess and the urgent care doctor said, “Your oxygen is way low we need to take you to the hospital.” So they did... That was when they diagnosed me with BOOP (Bronchiolitis obliterans with organizing pneumonia). That was the most recent thing that pushed me into getting help for my lungs.
3. What types of activities do you enjoy? Have you had to make any accommodations due to your lung condition?
I like to travel. I don’t do much walking around and carrying on because if I walk long distances I have to stop and catch my breath. For instance, if I walk 1000 ft. I probably would have to stop and rest up approximately every 300 ft before I can go on. So consequently to do anything, I am doing everything in slow motion, but once I stop and rest I am ready to go on again. So for example when I go shopping with my wife or going to large home or plant shows, I have to stop every now and then and then I am able to get my breath and make sure I don’t feel too dizzy.
I do like to garden a lot yet it has become increasingly difficult as the years have gone on. My oxygen flow rate has been increased from 3 to 4 liters per minute. My pulmonary doctor has taken me off of several of the medicines that I was on. I am not taking Breo, Spiriva, or Daliresp anymore but I think some of meds have been replaced with others like the Stiolto respimat. They took me off of those because my condition has stabilized. Although I have stabilized, while getting to this point, gardening became very difficult. Walking on the uneven ground, chopping the weeds with the hoe, bending over for long periods of time harvesting the hot peppers that I was growing, wears you out when you have COPD or emphysema.
Travel has become increasingly easy thanks to the advent of the smaller portable concentrator. I have owned several of those and as my flow rate has increased some of the models I own, I can’t use anymore. The first one I bought was about $3200-$3600. It went up to 3 pulse dose. Now I have two portable concentrators, one that the insurance paid for and one that I paid for and that has allowed me to have a backup unit. I think that it is really important when you are traveling to have a backup concentrator to use in the event that one fails. I like to take long cruises with my wife and if you are in the middle of the ocean, there is no way to get another concentrator if yours fails. I usually carry 2 portables, a roll behind concentrator that produces continuous oxygen, and my CPAP machine. Well needless to say when I pack for a trip, I have one suitcase full of medical equipment. It weighs a ton because they all have batteries and they all have power converting boxes. I have to account financially for the extra luggage and the weight of these items. A lot of times if I can, I try to take much of my medical equipment as a carry-on so I don’t have to check it. If you have to check equipment there are special procedures at the airports that they use to carefully wrap your equipment and tag it so it is handled with care. If you are flying, most of the airlines require you to have the battery power to run your concentrator 1 ½ times the flight time. I took a long 11 hr flight a couple of years ago and I had to buy enough batteries to supply my concentrator with over 16 hrs of usage. I also bring a power strip because you need space to plug in all of your equipment. Most cruise ships only have 1-2 outlets in their staterooms. When my condition was worse, I use to bring 2 battery operated nebulizers to use. The inner workings of these battery powered nebulizers would sometimes clog and not work so I would bring two just in case I needed to nebulize and the machine wouldn’t work. The other thing I would recommend is if you are traveling internationally, that you take all your connectors like hose connectors and swivels. They can be different in various countries. I carry at all times a course of prednisone (steroids) and I carry a Z-pack (antibiotics). After talking with my doctor, he has told me that if I start getting sick to start these medications and when I can, get to a doctor right away to follow-up. With the improvement of my lung condition though, I have been fortunate to be able to stop nebulizing my Albuterol and just bring a rescue inhaler with me. I have found that the cruise ships although they have the ability to give oxygen in their sick bays, they don’t like to do that. They want you to be responsible for your oxygen, your inhalers, and your nebulizers if you need them. The oxygen on the ship is not for the travelers to use but I would imagine if your concentrator totally broke down they would be obliged to help you out if necessary.
When I am staying in a hotel, I always ask for a first floor room. I suppose I could always use an elevator if they have one, but I prefer a ground floor room. The suitcase with the medical equipment is very heavy so rolling it to a ground floor room is much more convenient for me to get to.
4. What activities do you struggle to do on a daily basis?
Everything is a hassle when you can’t breathe. I can’t walk very far and I can’t carry a bunch of stuff very far. But, to be honest with you I have found that if something is going to be very hard for me, I just don’t do it. I tend to tell people that I am with that if I think something is hard for me, that they need to realize it is going to take me a while to do it. Now there has been times when I was traveling that I really wanted to do something that I know was going to be hard, for instance, walking up a hill to see a monument or walking down a crooked street. I just decide I am going to do it and I turn my concentrator up high and I take it a step at a time and hope I don’t fall over.
I also have to be careful when I exert myself. For example, I can still lift easily 100 lbs, but I can’t lift 100 lbs and walk 10 ft with it. So when I am unloading my truck, if I have to take anything off the truck it is okay, but if have to unload my truck and carry it over to the wheelbarrow, that would be too hard. I have to make accommodations like that.
Up and down steps is difficult. I would rather take an escalator or an elevator.
5. Do you participate in an exercise program or pulmonary rehab? What do you do to keep fit? How have you benefited from this exercise?
Yes, I am in pulmonary rehab. I get to exercise about three times a week and I enjoy riding the stationary bicycle. I am active and I try and get out every day. I am not the type that insists on staying in the house for fear of getting sick or thinking that going out is too much of a hassle. I feel like there will be time for that later when I really can’t do it. My doctor says that rehab has really worked for me and that I look a heck of a lot better than when we first saw me.
6. Do you have any tips or advice that you have figured out over time that help you to manage your lung condition?
Yes, one of my pulmonary rehab therapists told me once that pointing a fan at my face would help me to breathe easier. I don’t know why, but it works. Even when I get in the car and I feel breathless, I turn on the blowers in my face and it helps. Another thing is to remember when you get breathless is that you are probably not going to die. You are only going to do it once and at that minute it probably isn’t the time. A lot of times when I get really anxious about this breathing thing, I remind myself to breathe in through my nose and out though my mouth and try and to calm myself down. A lot of the problem that I think people with breathing problems have is the anxiety that goes with it. If you can just try to learn to calm down and think clearly to take your medicine.
7. Best advice given to you since your diagnosis.
It is very good to keep an open mind about things. Try things out and stay on the forefront of developments in the field and on the cutting edge. I would have never found out about things like the hand held battery powered nebulizers or how to locate and buy used equipment if I didn’t do my research.
8. Worst advice given to you since or diagnosis.
I don’t think this was bad advice but yet I didn’t get the hang of was pursed-lip breathing. It could have very well helped me but I just didn’t get the hang of it.
9. Anything else you would like to share with our readers?
Get with an exercise plan or a rehab plan run by a hospital or even the YMCA because if you are not moving around you are just going to get worse and worse and the spiral will continue to deepen.
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