One of the reasons I decided to become an RT was because I have asthma, and I figured I'd have empathy for my patients. What I learned after starting this profession is that the patients we treat most often are not asthma patients, but those with pneumonia and exacerbation of COPD. However, I still have empathy for them.
I can tell you what it's like taking care of COPD patients because I have had many long discussions with many of them. Still, I thought it would be neat to get an up close and personal view from a person who has lived with COPD. That in mind, I contacted Roxlyn Cole.
If you have COPD perhaps you've heard of her by perhaps reading her blog or by the fact she's an active member of the COPD community. I got to know Roxlyn through her blog and mine, and recently I asked her if she would mind writing about what it's like to live with COPD. She agreed.
We decided the best way to do this was for me to email some questions. What follows is my Q&A with a Roxlyn:
When did you first realize you had COPD, and what was your initial reaction?
I was told over the telephone by my primary doctor about test results 6:30 pm...he was so apologetic, I was consoling him, not know at all what it was all about, or how permanent the oxygen use would be.
My reaction to the delivered E tank was: "I will never go out of the house, I'm not THAT old. I asked if they had a smaller cylinder, they did, and that one looked downright 'sexy' in comparison to the tall E cylinder of compressed gas O2.
Did you ever say, "Why me?"
Not really, I figured we all get something sometime, and as inconvenient as being on a leash - tube of oxygen is, it beats a lot of other problems, and I was lucky to be caught early...mild/borderline moderate..
Was your COPD caused by smoking?
Probably that was a factor, along with occupational and hobbies-dust-fumes-pollution.Dry wall dust makes great lung sediment...refinishing furniture is another thing I did, along with being pool/aquatic director manager...oh that chlorine.
If so, how much did you smoke and how many years?
I smoked one to two packs per WEEK from age 17, with several LONG quit periods of 2 to 4 years long, thus 40 years.
What was the hardest part of quitting?
It always caused depression with me. Finally Wellbutrin helped with that. I had been on it for a year and getting the diagnosis...was enough to have one final cigarette.
The most satisfying?
It is nice not to worry when or where you next smoke. I always smoked outside my home, but visiting non smoking places..was very trying.
Having allergy/asthma, there are a lot of things I have to do different from people with normal lungs. For one thing, I can't just go to other people's homes if they have pets or other things I'm allergic to. I can't go to my dad's cabin like the rest of the guys. I used to do those things, and I've learned I had to make this change in order to control my asthma. It's extremely hard. In fact, I think that's the hardest part of having a breathing disease other than losing your breath.
Have there been any life altering changes you've had to make? If so, (other than quitting smoking and having to get used to TTO) can you name at least three?
Taking sooooo long to leave the house, planning what O2 portable to use, how many tanks, when walking taking along water, I.D., cell phone, oximeter, stop watch, the law of the "leash" O2 tubing.
Getting used to a CPAP machine, and dedication to exercise...keeping moving as long and as fast as I can...which dumps the trapped air.
TTO...love it in spite of some rare complications...allergy to metal chain & keloids in incision (I was predisposed to them - took the chance)this is the most wonderful and efficient delivery of oxygen. You suddenly realize you missed "your face"...you get it back.
How hard was it to make these changes?
The supplemental oxygen was equal to Energy, made exercise easier to do. The tubing dragging around catching on everything-abominal. Finally I decided to pretend it is a puppy on a leash wanting to stop and sniff. you know love pets but hate their problem times, but deal with it anyway.
The CPAP-took about a month of pretty rough non-sleeping nights. Planning about oxygen to go is second nature now, doesn't mean I like it though.
Have you ever been admitted to the hospital for breathing difficulties?
No, only had high blood pressure spikes (my heart beat harder faster pressure up trying to oxygenate me when sats dropped to 70's...I didn't know at the time I had a problem
What was your most horrifying hospital experience?
Boy, have I been lucky...hmmm one shot felt like a dart being thrown into my hip.
Eating food I didn't have to cook.
What did you learn from it?
With other various hospitalizations I learned to speak up, say what I needed, know ahead of time what my treatment and care would involve, then see it was done. Only hospitalized for Fast Tract TTO procedure and for a bronchoscopy, I consider these educational and interesting. Obviously no ER exacerbations for me...maybe because of all my extreme exercise .
I wrote a post about the five types of COPDers. Which type of COPDer are you? Do you think my description is close to accurate, or am I way off?
Bullous Emphysema minimal bronchitis & asthma factor, border line mild/moderate with a V/Q mismatch and diffusion problem.
When I was first learning about COPD I read of the 5 year average life time expectancy. I changed from an introverted shy bookworm to an outgoing talkative...wanting to learn all about it. I am going to TALK as much as I can, I am so big an advocate of exercise...I do it myself to the extreme, but hey, my numbers haven't changed for the worse in 6.5 years. Maybe a couple -normal degrees for the aging factor. The meds I use brought my numbers up (on paper, they would drop back without the meds). I am doing great, with LOTS of hard exertion and time consuming exercise to get there...worth every minute.going towards 7 years now. Exercise needs is a great excuse to not get housework done.
I have some really horrifying asthma stories I've shared on this blog. What was your worst COPD memory?
Worst horrifying to me experience was my first day of rehab class. We were sort of hit up the side of our heads - with a 2 x 4.
My RT said do you want good news or bad news first?
Give us the bad...You will die of terrible suffocation!!! I looked around in horror at dismayed teary eyed faces and decided she had something up her sleeve.
The good news? oh well, you will be given morphine so you won't feel it.
Then a long pregnant pause........
BUT, if you exercise you can slow the progression of the disease. 2 folks dropped out that day.
I vowed to beat it, I'd work my A$$ off. and I did, for years after rehab...right up to walking half marathons, using 15 liters of O2 pushed in 4 high flow tanks in a baby jogger stroller. Obviously no other physical limitations...a little hypertension is all.
What did you learn (if anything) from it?
Believe only half of what you see, and one - tenth of what you read. Always check the age of articles, and if it is a reliable source.
I'm sure you've met some pretty neat respiratory therapists, what is your impression of this profession? What is your favorite experience with an RT?
RT profession...while young and enthusiastic...great - - if schooled in current text books. Some mediocre ones just passing the day- not re education. those from the 'old' school are awful, believing the myth!. A great one Mark Mangus on line, and John Goodman RRT from Transtracheal systems...they both have family with lung Transplants so are exceptionally sensitive to patients.
I wrote a post called the seven benefits of having asthma a while back. Do you see any benefits to you having COPD? If so, what are they? Can you name at least benefits to having COPD?
My life, began over with giving up all my favorite occupations stopped (dusty, stinky chemicals, etc) The big benefit - I changed from a quiet introverted book worm to speaking out...a copd pulmonary rehab advocate. Never an athlete before, but now can walk HALF marathons...it took a few years to get physically fit to WALK it with loads of supplemental oxygen.
I have written many times that asthma has made me who I am today. In fact, if it weren't for my asthma I wouldn't be an RT, I wouldn't be blogging now, and I probably wouldn't have met my wife (she was an RN student who followed me at work). That said, if I could go back in time and change history so I wasn't born with asthma, I would be reluctant to do it. If you had an opportunity to go back in time, would you change anything? If so, what?
hmmm, if I could change my genetic predisposition to get inflamed lungs from dusty smelly triggers...that would be good.
I have benefited with the exercise so much and events opened up a whole new world to me that I enjoy...tho' at 71 right now I'm a little burned out after 3 Half marathons this year. Another one in October, hope I am up to it. I certainly won't expect to do 15 minute per mile like last year's Denver Half marathon where the stars & planets were in alignment...all the other 70 somethings were off running the full marathon and my competition were in their 80's...I scooped 1st place against normal folks...cool.
We learn in RT school that the #1 goal for treating COPD patients is to help them to continue to be productive members of society. Do you think this is a good goal? Have you been able to stay productive? If so, how do you achieve this?
Yes, keeping in with society is important. I am more so now than before, I help out with the ALA Colorado coalition, the Colorado COPD Connection and write many articles to all respiratory magazines...proud to say one even was in the AARC Times and another posted on LTOT websites. I was shocked into 'moving' to prove I would control my disease and maintain numbers - except for the aging factor...successful for going on 7 years, with fewer colds than before copd diagnosis.
I know you stay pretty active, and preach that people keep moving and exercise. I preach the same on my blogs. How important is exercise to the quality of your life as a COPDer or COPDers in general?
Extremely important, I was weak like a toddler from deconditioning before it was determined I needed supplemental oxygen 24/7. Not getting enough oxygen for a couple of years was sleeping my days away and became dreadfully weakened...thought it was old age.
I thought it was very interesting to learn you have transtracheal oxygen (TTO) How did you come to the decision to get it, and how has it made your life better?
I was asked early on if I wanted a tto but at first the idea of an extra hole in me was not acceptable
Would you recommend it? (I know you would, but I'm just asking anyway)
You bet, I wished I hadn't waited so long (3.5 years)..., I hoped it would lower my oxygen flow requirements, that makes portables last longer. It did by 50% of slow activities and somewhat for heavy exertion. At altitude and with my V/Q mismatch...going 4 mph I require 15 liters, only 10 for 3.5, and 6-8 at 3 mph...much depends if ground is level or a hill. Stair climbs & hills are major challenge.
Mike McBride is a friend of yours who also uses TTO. He participates in marathons using his oxygen, and pulls a cart carrying his oxygen supply behind him. Recently he participated in the Boston Marathon and he became the first oxygen dependent person ever to accomplish this feat. In your opinion, how significant is this to the COPD community?
It is a thrill, but we always have to say, that distance is not necessary for everyone...he likes walking, I do too, and we are somewhat extreme rising to meet challenges. We want to stay strong to care for ourselves and not become a burden to our loved ones. Some patients say "I can't" with many I think they like getting waited on and don't really want to put in the effort enough. What you put into it you get out of it-better functioning & definitely a superior quality of life.
You seem to be a rather optimistic and motivated person who makes a gallant effort to help others. I think that's great, and I think many COPDers out there benefit from what you do? One of the ways you do this is by spreading the word about TTO and sharing your COPD wisdom via your blog and COPD communities. What motivates you to do this?
I was helped at first on on-line support sites, saw how others went down the tubes, wouldn't listen or help themselves, this horrifies me.
Were you always interested in doing things to help others, or is it the benefits of COPD that inspire you to do this kind of thing?
Oxygen gave me energy to tackle moving a little more each day, I always have been a teacher (Aquatic director-teaching all ages- to swim, babies to lifeguard training. The pool chemicals-management probably didn't help lungs.
Is there any thing else you might want to share with my readers? Any words of wisdom I might have missed here in my questioning?
oh ...to the Respiratory professionals: your encouragement and help is extremely important...pleas know and be confident, patients are grateful though they may not say thank you. Be CONFIDENT you are the key to helping a person thrive with nudging them to move, use it or lose it. Be firm without being too too scary.
Patients ...take charge you can do more gradually improve day after day. Think only exercising one minute more each week adds almost an hour to what you start out with in a year.
What's your advice for young people considering having that first cigarette?
Don't do it, I point at my oxygen tanks, the visual of me walking by the high school...I hope impresses some to think twice.
What is your advice for people who just recently learned they have COPD?
CHOOSE what direction you want to take in life...up and better, or the downward spiral to pathetic dependency on others.then the simple eat-sleep-find meds to work for you, take charge of yourself and train your brain to like exercise - then do it...and of course, if you smoke work on stopping that and avoiding bad air of any kind...WASH HANDS, take a box of baby wipes in the car to use after being in a store..
I should have made this question #1. I got to know you through the COPD community here at Yahoo, or did you discover me first through my blog? I can't remember?
I saw your blog on the Google copd blog alert...the debunk the old myths topic.
Would you briefly describe for my audience who you are and what projects you are involved in?
Better they read this: http://www.copd-alert.com/LynCole.pdf. This is a good introduction to me from 2006 an that article in the COPD Digest. The blog address at the end is incorrect ...it should be http://profiles.yahoo.com/roxlyngcd
Since then now in 2009, I am 71, involved with 4 on-line support groups, I try to pick out folks in need of help with pulmonary rehab, or oxygen products..
My new passion is testing out products such as POC's, liquid oxygen portables, anything manufacturer's will let me try.then I write it up on my blog...the biggest day was about the ViaSpire liquid home fill unit...that brought in 1002 visitors on one day.
I am an AARC special member, a CSRC, NHOPA and ALACO (helped with the Colorado Copd Coalition), also active as a patient advisor with the Colorado COPD Connections group-we put on a conference each year. One is coming this Oct 3, 2009.
I write many articles about COPD rehab, TTO (Dr Petty calls it Necking with Oxygen", about testing from a patient's perspective, the walking events I participate in, and traveling with oxygen...published in AARC Times, Everything Respiratory magazine, COPD Digest, Breathing, ALA newsletters, NHOPA, and the Pulmonary Paper...also on line articles (see "A patient's perspective of POC's, Portable Oxygen Concentrators," By Roxlyn G. Cole, http://www.ltotnet.org/resources_patients_perspective_on_POCs.html)
Then of course my daily pul rehab & after blog.
Perhaps we've covered this already, but I'm going to ask it anyway. I explain to my readers all the time what it's like living with asthma. What's it like living with COPD?
I am most fortunate, having only mild/borderline moderate. and without the bronchitis factor. The adjustment was getting over being tied to an oxygen source...imagine being on a ball and chain, that you have to keep disentagled from catching on things, and always gauging how long you can stay out with the portable you have. It is a love hate arrangement. I love what the O2 does for me, hate the restrictions. You just have to deal with it and get over the initial roller coaster ride of emotions that goes with it...depression is normal at first. Tackle one problem at a time.
I'm going to ask you to speculate here. When I'm taking care of my COPD patients I always tell them I understand what they are going through because I've had bad asthma attacks many times? Do you think there is a difference between being short-of-breath with COPD as compared to asthma?
I have heard asthma is by far the worst than . the sob feeling isn't pleasant, but you can work to overcome - or at least deal with it. I think I had more discipline than most from life guard training, I don't panick easily...swimming also I think, increased my lung volume which is way over normal.
Last question. I think there is nothing worse than when you can't catch your breath. It's basically something you take for granted until it's not there, and when it's not there it's simply horrifying. It might even be worse than the worse pain. Would you agree with this assessment, or am I going overboard?
I don't think you are exaggerating, I haven't "visited that sensation...yet except when wind was knocked out of me from a fall on my back".
That is part of the reason I work so hard on walking and breathing, I don't want to "go there" or suffocate.
With COPD one wants to dump the trapped air so new air can be drawn in deeper. The longer the walk (with PLB) the better I feel afterward...the lungs that is, my muscles of course get tired.
I like the analogy of blowing to cool the soup on a spoon without spilling it, just a gentle back pressure, not as forceful as blowing out candles. AND getting the air in nose or mouth, it doesn't matter which way you draw it in!
Oops, one more. I became an RT because I knew I would have empathy for my short-of-breath patients because I was once one of them. Do you think that people who are RTs and have never been short-of-breath can be equally empathetic to chronic lungers like you and me?
I do wonder, they could simulate the sensation...the test needed is to do about 15 rigorous jumping jacks, pinch ones nose and try to do all breathing through a straw.
Another must in RT training (in my opinion) would be to wear a cannula 24/7 and lug around an oxygen portable...also at home see how it feels to walk around on 75' of tubing. THEN, you might get a tiny idea of how annoying and frustrating it can be. Try making a king size bed up with a long hose on...oh, that can be difficult until you learn to flip the hoses around. Learning to wear a CPAP is a challenge too...see attached photo of hubby & me, also one of my "lungs a la carte", then a chart of how different POC's worked for me. My findings actually were right in line with professional tester Robert McCoy.
Thanks Roxlyn! You taking the time to answer my questions has provided us with some great into a COPD mind. And I'm sure all my readers appreciate you taking the time to do this. I know it's not easy, but any time a person can be as open as you about living with a disease everybody benefits.