COPD: When diagnosed, don't give up

Hello Katieoxo22, can you please tell us a little about yourself?

I am 68. I am a widow with grown up children and grandchildren. I am also a member of two groups of elders, which I am on the committees. This all keeps me active in mind and body. I like theatre, gardens, eating out, taking vacation, and holidays. Holidays are great because they give me a short break. I live in a three bedroom house on the outskirts of a city, with a decent sized garden. I enjoy doing quizzes, jigsaw problems and crossword puzzles also for a less strenous entertainment.

You’ve been diagnosed with COPD. What symptoms did you have and what made you consult your GP?

I had a cough that was bringing up blood… I consulted my GP because of the blood and feeling less than my normal self.

At first you were misdiagnosed. How did this happen? How much time did it take for the correct diagnosis to be established?

I was referred for a walk-in X-ray, and within a few days, I was referred to an emergency cancer clinic due to abnormalities on my X-ray. I underwent another X-ray, a thoracic medium scan, liver scan, and another chest scan. I also had blood tests, Bronchoscopy, a full medical examination, and breathing tests. A multi-disciplinary team, including a lung cancer nurse & consultant, along with my GP explained to me the risk of cancer, death, and my odds on surivvile.

Eventually, a COPD consultant, and a professor in lung disease at the Glenfield Hospital came in to the picture. It was several years later for the dianosis to be confirmed to actually be COPD.

How much did you know about COPD before the diagnosis? What kind of information did you receive at the moment of the diagnosis? Where have you been looking for information since then?

I had very little knowledge. No information was given to me at the time of diagnosis, just instructions on how to control an uncontrollable cough, advice for losing weight and diet, advice on how to have a positive outlook  since I would be not be able to live my expected and desired lifestyle. I was also presecribed Gabapentin. Since the diagnosis, I have used various online services for knowledge and communicating with others- Carenity, British lung Foundation, and the Breathe Easy Group. I also am a member at a gym and have spoken to people there for other information, as well.

What kind of treatment were you prescribed? Did you have a say in the choice of the treatment? What were the results?

Inhalers were main thing prescribed, plus steroids in crises. I also participated in a research and did twelve months at a lung health course prescribed by my GP. I was not given a choice other than asking for Rehab and eventually receiving it after persistence. The Gym did not change anything but caused a flare up of other illnesses. The inhalers appear to control the illness however I still have a persistent underlying cough.

What other conditions do you have apart from COPD? Were they taken into account when you were prescribed the treatment for COPD?

I have hypertension, osteoarthritis, and more recently have been diagnosed with raised uric acid levels with gouty symptoms. I am also diagnosed as Asthmatic. These were not considered, to my knowledge, when the treatment was decided for my COPD.

Where are you now with your conditions? How often do you have check-ups and with which specialists? Do you have a relationship with your doctors? Are they attentive to what you have to say about your condition and your treatment?

My COPD is very stable, but it gets worse in the winter months. I do not see any specialists at the moment; however, I do have an annual check during the flue season and see my GP every three months, unless a crises occurs due to my various illnesses and drug intake.

What is the impact of COPD on your everyday life? What helps you cope with it (people, support groups, hobbies, activities…)?

My everyday life is very impacted in all aspects due to COPD. COPD reduces my physical capacity to do things that other people are able to do who are in my age group. However, I have made many adaptations. I have a stair lift in home to bring up the stairs, a shower seat, a shopping trolley, an adjustable chair and bed, a light weight vacuum cleaner, and other objects which permit me to have a more reasonably normal life. I try to avoid smoky situations and things that trigger coughing bouts, like sprays (cleaning products that are in spray form, etc.), and oil based paints in decorating. New tarmac, also, often can trigger a cough.

What message would you like to share with other COPD patients?

Do not give up when diagnosed. The only thing you should give up when diagnosed is smoking. Be sure yo talk to your doctors as they can create the best care plan and medical management plan for you. Also eat sensibly, exercise often without being too strenuous. Do the things you like best because nobody knows what the future holds!