Diagnosed at 35 with Emphysema and COPD
Hello, I am glad I found this community.
I am 35 and 2 months ago I had an episode of shortness of breath so strong that I felt I needed to go to ER. I went to a pulmonologist couple of day after, i did a spirometry test which came out "almost" normal he said (FVC 5,11 130 4,94, FEV1 4,44 135 3,29, FEV1/FVC 86,9%) but he said i had mild COPD. I did a chest xray which came out normal and later did an MRI that showed bullous Emphysema, 5 cm on each upper lobe. I went back to the pulmonologist who said it i had COPD A Gold 1. I am 35 but have been a smoker for 20 years and 1 pack a day for 10 years or so. I stopped smoking immediately but i have been feeling really weird this last 2 days. I have been extremely tired, all day in bed, i feel a little fever and chills, i don't feel like i have shortness of breath i think but i feel my throat is stuck, feels a little like a suffocation feeling, also my chest burns, feels like is on fire.
I have so many questions I don't know where to start. I hope some of you can clarify my doubts because the 2 pulmonologists I visited didn't explain much. I asked them if this condition would have change or shortened my life expectancy, and one said not really, because I caught it early as long as I immediately stopped smoking, eat healthy, exercise the other one said pretty much the same but I felt he was a little more concerned. I felt that both in a way were hiding the truth from me in a way, maybe they saw I was death scared. I don't know. But now I am learning that this condition is a really serious one and life changing, life threatening even when is mild.
I hope someone can clarify my questions:
- 1) The first and most obvious has my life expectancy decreased from a normal person. The fact that I am 35 does it change things? Can I live a long life 80 years+ or I am expected to live shorter or even a really short life? I have red average life expectancy for patients with Stage 1 is 14 years. Is that true?
- 2) Is this disease always progressive? i was told that my spirometry is normal but the MRI confirmed bullous emphysema. Can I maintain a GOLD 1 stage if I don't smoke and keep healthy or is it always progressive?
- 3) I was just told to quit smoking, exercise and eat healthy but the only medications I was prescribed are airon for 3 months, Cortynase for 7 days and Rinaris for 5 days. I wasn't given any bronchodilators which I have red almost everybody is using. My mother sometimes has bronchitis and she has Flutixair 50. Would that work?
- 4) I already started to feel some symptoms as I mentioned before. Is this normal on stage A 1 GOLD? Is 2 days I feel really tired, want to sleep all day, my chest burns, I feel little fever, my lips hitch a bit and the worst is that my throat feels stuck.
- 5) I have read there is a surgical treatment for bullous emphysema that not everybody can do but if I am eligible should I consider talking about it with my pulmonologist? Does this procedure slows the progression of the disease or is performed only to limit symptoms?
- 6) I am an airline pilot, is couple of years I haven't been working but my plan was to come back to my job but I have red many people can't fly because of COPD. Will sooner or later loose the ability to fly as a career but also as a passenger?
- 7) I have red that during COPD A Gold 1 there are no symptoms but I am clearly having symptoms. Could be this worst than Gold 1 A, could they be wrong? 5 cm on each lobe feels like a lot, can a spirometry test be wrong? Due to the symptoms should I consider redoing the spirometry?
- 😎 My grandfather died of pneumonia and he had several machines, 2 were sold which were pretty expensive but I have found an oxygen tank that I tried yesterday and I felt a little better. Will I need to use oxygen in a future as a certainty even if I stop smoking, keep healthy, exercise and keep the disease under control?
Thanks everybody in advance for providing help in clarifying my doubts.
Hello mav1919 and welcome to the community! I'm glad you found us and appreciate you reaching out. Being newly diagnosed can feel so overwhelming and scary! We cannot provide specific medical advice or diagnostics over the internet (for your safety!) but let me answer your questions to the best of my ability and hopefully help to ease some of your worry!
Catching COPD in the early stages is a very good thing! It means you have more time and opportunity to slow the progression of the disease. Yes, COPD is always progressive, but how rapidly that progression occurs can be greatly influenced by when it is caught and how you are caring for your body. Becoming smoke-free, eating well, getting regular exercise are all positive, helpful things to do! This article expands on that a little bit: https://copd.net/living/tips-for-staying-healthy-early-stage/
There is no set life expectancy when it comes to COPD. All bodies are unique and therefore respond to the disease in their own way. There are many members of the community who have lived decades with COPD following their diagnosis. Many even live well over a decade once they reach stage 4, albeit at a slower pace!
As far as treatments are concerned, many with COPD are prescribed bronchodilators when they are indicated. As your COPD was caught in stage 1, that treatment may not be necessary for you as yet. As your doctor indicated and as the following article highlights, at this stage treatment is mostly lifestyle changes, not prescribed medications. https://copd.net/living/early-stage-treatment/ Oxygen therapy is also something that is usually not indicated until the later stages. It is never recommended to use a medication prescribed to someone else.
The bullectomy is typically a procedure that is not recommended until a patient has reached severe COPD (stage 3). This article gives an introduction about the surgery: https://copd.net/clinical/bullectomy-severe-copd/ You certainly can discuss it with your pulmonologist and s/he can offer you more details about how it may pertain to you specifically.
There are many in the community who continue to fly with COPD, well into stage 4! However, as the disease progresses, this is something you should discuss with your doctor. So long as your doctor determines you are still healthy enough to fly, there is no reason you cannot continue to do so! Depending on the medications you are prescribed, it can take some additional planning as far as oxygen tanks are concerned (and there is no guarantee that you will need them, some people do and some don't), but it is certainly still doable! We have a variety of articles about traveling with COPD you may want to peruse: https://copd.net/?s=travel
It is important that you feel comfortable with your primary physician and pulmonologist. If you are feeling worried about your symptoms, you can always reach out to your medical team or seek out a second opinion.
I hope all this information helps you feel a little more comfortable with an early stage diagnosis and not so overwhelmed. Please know you can reach out anytime you need support! We are always here to listen. Wishing you a gentle day. ~Allyson (COPD.net team)How are you doing so far?
