In this interview, Katieoxo22 a COPD patient, tells us how she was misdiagnosed for several years and how she managed to get the correct diagnosis. She also shares her ways of adjusting her home to make her everyday life with her numerous conditions easier.
Hello Katieoxo22, can you please tell us a little about yourself?
I am 68, a widow with grown up children and grandchildren, a member of two groups of older people and also on their committees, which keeps me active in mind and body. I like theatre, gardens, eating out, trips out and holidays. Holidays are usually short break kind. Live in a three bedroom house on the outskirts of a city, with a medium back garden. Do Quizzes, jigsaws and crosswords for less active entertainment.
You’ve been diagnosed with COPD. What symptoms did you have and what made you consult your GP?
I had a cough bringing up blood with breathing reduction… I consulted my GP because of the blood and feeling under par.
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 walk-in X-ray, and within a few days referred to an emergency cancer clinic due to abnormalities on my X-ray. I underwent another X-ray, thoracic medium scan, liver scan a further chest scan, blood tests, Bronchoscopy plus full medical examination by Registrar and breathing tests. A multi-disciplinary team including a lung cancer nurse & consultant along with GP explanation of the risk of cancer death and odds on survival, plus eventually COPD consultant researcher, and a professor in lung disease at Glenfield Hospital. Several years is how long it took for the diagnosis to be confirmed without a doubt.
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?
Very little knowledge, no information was given only instructions on how to control an uncontrollable cough, diet advice for losing weight and advised to change my attitude as I would be disabled in future due to my lifestyle and prescribed Gabapentin if all else failed, which I believe has a side effect of cough… Since which time I have used two forums, British lung Foundation, on line sites, breathe easy group and gym for info.
What kind of treatment were you prescribed? Did you have a say in the choice of the treatment? What were the results?
Inhalers were the mainstay prescribed. Plus steroids in crises. I also went on research and did twelve months at a lung health course prescribed by my GP. I was not given 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 raised uric acid levels with gouty symptoms, also diagnosed as Asthmatic. These were not considered to my knowledge when treating the COPD.
Where are you now with your conditions? How often do you have check-ups and with what specialists? Are you in good 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 chesty in the winter months. I do not see any specialists however I do have an annual check around flu jab time and see a GP every three months unless a crises occurs due to my varied 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 on in all aspects by COPD as it reduces my physical capacity to do things others do in my age group. However I have made many adaptations like a stair lift to take myself and other things upstairs, a shower seat, shopping trolley, adjustable chair and bed, light weight cleaner, and other objects which allows a reasonably normal life. I try to avoid smoky situations and things that trigger coughing bouts like spray cans which are norm these days, oil based paints in decorating, new tarmac too is often a trigger believe it is the bitumen in it.
What message would you like to share with other COPD patients?
Do not give up when diagnosed, only the fags of course if you smoke, talk to your medics to get the best care plan and management in place, eat sensibly, exercise little and often. Do the things you like best while still able no one knows what the future holds for themselves so enjoy.