Debra recently left a comment on our suggest a blog post competition suggesting a post on how e-cigs can help people with emphysema. We asked her if she would contribute, and she has very kindly answered our questions about how she got emphysema, the devastating effects it has had and how she feels e-cigs have helped.
Tell us a bit about your background:
I am a 40 yr old single mother of 2 wonderful sons oldest is 19 and youngest is 11. At 18 I was diagnosed with thyroid cancer. I had 4 surgeries over the course of 1 month. I remember my mom saying:
"Well now you need to quit smoking!"
I asked my surgeon if I had to. His response was smoking has nothing to do with your particular cancer but it can give you lung cancer.
The time I spent in the hospital for my surgeries my nurses got to know me pretty well. They showed my how to disconnect certain tubings and things and gave me permission to go out to smoke without asking them. I was also diagnosed with asthma in my teens but cant recall any real asthma attack just coughing spats.
I had my first case of bronchitis at 11 by my mid 20's I was told I had chronic bronchitis - I was not aware chronic bronchitis was a form of COPD. I thought it just meant I was more susceptible to bronchitis. I have also suffered from allergies for as long as I can remember.
How and why did you take up smoking?
I began sneaking puffs of my mothers cigarettes when I was 12. It didn't take long and I was buying packs from a gentleman whom back then would sell them to the local kids for $1.00 per pack. Before school after school and in the bathroom at school I was smoking.
I got caught by my mom at 13 and she gave me permission to smoke as long as my father didn't find out. I can't honestly say why I began smoking. I think it was more of a curiosity thing at first and developed into a dependancy issue later. It wasn't for the cool kid factor, back then it wasn't a stress reliever but it developed into one later on, it wasn't my crutch but again it did turn into my crutch later on. I just enjoyed smoking.
When were you diagnosed?
In October 2011 I developed what I thought was a bad cold that within days developed into a scary cold. I couldn't stop coughing, was wheezing, lungs were making crackling noises, my face was almost purple, I was dizzy. So I went to my primary care doctor on october 7th. Over the last year people had made comments on my face being red but my blood pressure had always been good. This visit he said:
"Debra you are very, very sick and need to be in the hospital."
I explained it wasn't possible as a single mom with pets I had to be home to care for my children & pets. 4 times he insisted. almost begged me to go to the hospital. He did make me promise if I worsened to get to hospital asap, perscribed an inhaler, antibiotics, prednisone, and a nebulizer for breathing treatments.
That night I could barely breathe and did go to the emergency room and was admitted for:hypoxia and copd exacerbation. The next morning in the hospital a pulmonary specialist called in by my primary care saw me and explained I was having a pretty severe copd exacerbation.
I didn't know what any of that meant - an exacerbation means a worsening of copd - sometimes short term sometimes lasting months, sometimes permanent damage sometimes temporary damage. When I was discharged from the hospital it was with more inhalers, steroid prednisone for 3 weeks and breathing treatments via my nebulizer every 6 hours. 10 days after my discharge I was back in the hospital.
This time the emergency room doctor ran a ct scan he suspected a pulmonary embolism-the results were paraseptal & centrilobular emphysema. I received this diagnosis 2 days prior to my 40th birthday. The emergency room doctor also informed me I broke a hospital record and they could not understand how I was still sitting up talking.
My carboxyhemoglobulin levels were 32%! my prior hospitalization days earlier my carboxyhemoglobulin was in the 20% range. He explained the level at 32% is what they would find in someone unconscious in a fire! A normal non smokers levels are 1-2% smokers can go as high as 12-15%.
Definition of carboxyhemoglobulin: Carboxyhemoglobin (British English: Carboxyhaemoglobin) (COHb) is a stable complex of carbon monoxide and hemoglobin that forms in red blood cells when carbon monoxide is inhaled or produced in normal metabolism. Large quantities of it hinder delivery of oxygen to the body.
Tobacco smoking (through carbon monoxide inhalation) raises the blood levels of COHb by a factor of several times from its normal concentrations. Definition of hypoxia: Hypoxia when the blood fails to deliver oxygen to target tissues. My lungs were so damaged that the oxygen was not getting into my bloodstream and the carbon dioxide was not able to reach my lungs to be exhaled.
As the level of carboxyhemoglobulin rises in copd, the higher the level the more severe your exacerbation/condition is. Apparently, as explained to me in my condition/s my vessels alveloi bronchi etc are scarred and damaged to the point that the exchanges of oxygen & carbon dioxide is being prevented in my lung tissues/vessels.With the hypoxia it caused secondary polycythemia.
It is a vicious progression. I had had a few years of shortness of breath, and noticed it worsening. But...as a smoker I didn't complain to my doctor. I knew the answer would be stop smoking and you will breathe better. Since October every time I've weaned down my prednisone dose my lungs have gotten bad and I was right back on the prednisone.
How did the disease affect you?
Emphysema is irreversible and degenerative. No cure, just treatments to control symptoms. In the morning I do a breathing treatment on my nebulizer - Duoneb is my medication that goes into it, a Fluticasone nasal spray to keep allergies in control so they don't flare up my lungs, 1 hour later I use symbicort inhaler, 1 hour after that I take flovent inhaler.
If my lungs are acting up just a tad I have to do my breathing treatment every 4 hours, if not I do it 2 or 3x a day. At 3pm I use a spiriva inhaler, evening about 8-9pm my breathing treatment again, 1hour later symbicort again, 1 hour after that flovent again. I have to carry a rescue inhaler when I leave home. If I am having a flare I also have to schedule in prednisone 4-6x a day.
I see my primary care doc at least 1x a month if not more. I see a pulmonary specialist. It seems my days are scheduled around medicine dosages. Financially - between doctor visits & medications it has destroyed me. If it's humid I cannot go outside because I can't breathe, if the pollen counts are up I cannot go outside, more often than not my lungs are tight and make it hard to breathe so I cannot go out.
Most days I am exhausted due to the lack of oxygen circulating in my blood, sweeping my floors leaves me breathless and I have to stop my daily cleaning and do it in short spurts. The worst affect it has had on me is the guilt I feel. My children & loved ones have to watch me with this disease..
The guilt comes in because I CAUSED THIS BY SMOKING! My mother always rode me to quit smoking, my 19yr old son began asking me to quit smoking around 10, my 11 yr old son has been asking me to quit smoking and despite those who loved me asked me I continued to smoke. Now I have to live with the guilt that I caused my emphysema/s, given the repeated flares/continued exacerbation since october I've gone downhill and my kids have to see this.
Going to go do the dishes my 19yr old son said:
"Mom go sit down, your face is purple. I'll do the dishes."
It hit me really hard when I asked my 19 yr old to go the store for me to get me a pack of cigarettes, I was having a bad day and going out in the humidity would have been worse on my lungs - his answer:
"Why? So I can help you kill yourself?"
My heart broke right than and there.
That same weekend my 11yr old son spent the weekend with my ex inlaws, when grandma brought him home she took me outside and told me he had been sad and they asked why. He told them:
"I wish my mom wasn't so sick, I'm scared she's going to die."
My nasal spray inhaler, and 3 of my 4 lung inhalers contain steroids - due to the amount of steroids I am highly suseptible to anything - so I have to be careful not to get a cold which means avoiding sick people-shopping can make me sick and back in the hospital if I catch germs....also it causes loss of bone density so now I get to take a boat load of calcium & vit D and bone scans to make sure my bones arent loosing to much density. I have to get a flu shot every year and pneumonia shot every 5 years because the flu or a case of pneumonia can kill me.
How many times did you try to quit, what methods did you use, and how did they effect you?
I tried to cut down the amount I smoked with the goal of reduce to none-that didn't work out well, it seemed I might have cut down 1 or 2 cigarettes a day than back to a 2 pack a day habit. I tried cold turkey after about 6 hours I gave in and bought cigarettes - tried both those methods many times.
When Zyban first hit the market about 12 years ago I tried that - lasted 3 days and my ex husband brought home a carton of cigarettes and said smoke every one of them - because I was so moody and having bad withdrawl from cigarettes and begging him to let me stop the zyban. I tried the patch twice, last time was october 2010 - my grandmother died the year prior due to lung cancer and I promised her I would quit smoking. So on the date of her death I tried the patch for the second time. Both tries with the patch I smoked with it on and within a day or two I ripped it off and gave up. In fact I still have nearly a full box from 2010's attempt. My attempts to quit smoking probably total well over 30 tries or at least half hearted attempts over the years.
How did you hear about e-cigs, and when did you switch to them?
In October when I got out of the hospital the second time an online friend asked where I had been and I explained what was going on. She told me her husband smokes e-cigs. Her & her husband gave me a link to a website, told me what to order and how all this stuff works. I never knew such a thing existed, I did see commercials in the middle of the night on tv but I thought yeah right, another money making scam. My primary care doc prescribed xanax to calm my nerves and said cut down on my smoking, my pulmonary specialist said quit NOW. I guess since primary care said cut down until you quit I took that as I can still smoke... I didn't believe I had emphysema at first. After all, I'm only 40 isn't emphysema an old persons disease? Plus isn't it supposed to develop gradually? WRONG! November my pulmonary specialist ran more testing including a pulmonary function study - he compared my lungs to that of someone 60-70 yrs old.
I had been on and off prednisone and everytime I weaned down my lungs would flare, on top of the inhalers & breathing treatments. He explained in some cases such as mine - I had shortness of breath for a few years not severe but enough for me to notice, that was emphysema and I didn't know it. Sometimes such as my case it can hit you hard and furious then its diagnosed vs gradual progression. I than realized I really do have emphysema. My pulmonary specialist explained the only way to slow or try to slow its progression is stop smoking - and use all these medications I'm on to treat the symptoms and try to keep my lungs from flaring.
I saw an e-cig in a gas station and bought it, figured $20 investment let's give it a shot. It was ok, but not quite what I needed. The website my online friends had referred me to was expensive and out of my budget. I began researching the internet and it opened a whole new world. I found some black friday sales and bought 2 kits and some juice. I've used e-cigs since. I didn't totally quit smoking yet... I did make it a week without smoking on the e-cig and had no moodiness, no craving for a cigarette none of the side effects I noticed with my other quit smoking methods. Then.... the one battery I bought died out, and the second kit I used the 2 carto's that came with it and didnt have back up. The fist one, the battery that died I really liked so I didnt bother to get more cartos for the 2nd kit. Well..I went and bought a pack of cigarettes and they tasted horrible. I've since purchased a couple more e-cigs and used them to gradually reduce the amount of cigarettes I smoke.
My primary care & pulmonary specialist think it's a great way for me get of tobacco cigarettes. I had reduced my amount down to a pack a day with using the e-cig, if I gave it a full hearted attempt I could have quit fully from the first day with the right set up. I ended up having a scary attack on my lungs again and said why bother trying to quit, and was back up to 2 packs a day. The end of march is when my older son made his comment about why so I can help you kill yourself, and my 11yr old cried to my ex inlaws - I was so sick and he was afraid I was going to die. So... April 8th my grandmother's birthday and Easter Sunday I put down my cigarettes for good. I know it hasn't been that long I did slip up one morning in that first week and smoked 2 cigarettes and they tasted horrible and I thought, how could I have done this for 27 years YUCK!
What effect has switching on you had?
Switching to the e-cig won't remove all the guilt I feel that I made myself sick and my loved ones ,expecially my children, have to watch me this way but my loved ones are happier I am not smoking, it's helped me mentally feel better that I am not smoking cigarettes anymore nor will I ever again smoke another. With the emphysema, chronic bronchitis I will always have some tightness and pain in my lungs-but with the e-cig it is a lot less than it was with cigarettes. In fact, my breathing is slightly better already. I know I will never breath normally with the emphysema but the fact is breathing is easier with the use of e-cig, and I feel it will improve the longer I am away from cigarettes.
What is your motivation in sharing your story with us?
I want to get my story out to as many people as I can and went into alot of detail because I want to help people learn about e-cigs and the true dangers of smoking cigarettes. I'm hoping my story can save someone hopefully a lot of folks from getting a diagnosis of emphysema or lung cancer. Most people look at emphysema as an old persons disease that comes gradually-as you've all read it isnt always that way. My grandmother was diagnosed with lung cancer - and 3 weeks later she passed away. She smoked right up until the day she was told she had lung cancer.
I took care of her when she was ill, I was her special person and she was mine - she never told me what to do but she did say:
"Sweetheart, you need to cut down."
"Nanny, I will quit I promise but now is not the time."
Now was never the time.....
Now I have emphysema & have to take all these inhalers, breathing treatments and medications for the rest of my life because I never thought it was time to throw out the cigarettes.....
If you are smoking cigarettes NOW IS THE TIME before you recieve a diagnosis of emphysema or lung cancer.... NOW IS THE TIME so you don't have to spend the rest of your life ill and full of guilt while your loved ones watch you decline in health ... NOW IS THE TIME or you might spend all day taking madications scheduling shopping around pollen counts, humidity, and when there are less people going to be there afraid to catch germs because a simple cold can land you in the hospital or kill you..... E-cigs are the easiest, best way to stop smoking tobacco cigarettes!
Disclaimer: Any opinions expressed in the interview may not those be of the Ashtray Blog. People with emphysema should take medical advice before switching to electronic cigarettes.
Morjaria J. B E-cigarettes in patients with COPD: current perspectives Int J Chron Obstruct Pulmon Dis. 2017; 12: 3203–3210. Published online 2017 Nov 1. doi: 10.2147/COPD.S135323