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Submitted by PatientsEngage on 18 January 2020

Ramesh**, 58 from Mumbai on the challenges of living with COPD for the last 16 years and the effect it had on his lifestyle and his mental health and wellbeing and how he has came to terms with it. 

Please tell us a bit about your condition 

I have COPD which is Chronic Obstructive Pulmonary Disorder. I was diagnosed nearly 16 years ago in June 2004.

What were the early symptoms? What made you go see a doctor?

It was May 2004 and I was travelling to Israel for the summer. Suddenly one day, I experienced severe breathlessness and left sided chest pain. I went to the hospital and plenty tests were done thinking it was a related to my heart. However, it was inconclusive, and I was sent home to rest. I was on bed rest for almost 15 days. I came back to India once I was feeling a little better and made an appointment with the top Pulmonologist Dr Udwadia. He diagnosed me with COPD.

Please describe your experience of managing your condition.

My Pulmonologist put me on inhalers, and some pills initially. Over the years it kept getting worse and soon nebuliser was added. In 2008, my oxygen levels dropped, and I was advised to start on Oxygen concentrator. Since the last 5 years, I am on BiPap (bilevel positive airway pressure) machine which helps me sleep better at night.

I was also advised by another Pulmonologist to do Pulmonary Rehabilitation every day. I used to go to the hospital everyday for an hour but slowly that dwindled off as I could not keep up with it when I would fall sick. I would catch respiratory infections often and the antibiotic treatment would completely drain me, making it difficult to get out of the house. I even had a Physiotherapist coming home but that too eventually stopped.

What is your present condition?

I have increased breathlessness over the years. Now, I am on oxygen 24/7 and BiPap machine10-12 hours a day. I have a night nurse who helps me with any discomfort at night. Mostly, the bipap mask, as it does not remain in place for long, the alarm goes off and so has to be adjusted frequently. She also makes me do 15-20 mins of breathing exercises every night.

Do you have a family history of your condition?

No

Have you had any related complications from your primary condition?

Yes, I have developed Pulmonary hypertension since the past 10 years.

What medications are you on currently?

I am on daily meds for my hypertension and irregular pulse along with daily dose of inhalers, nebulizer & medicines:

Inhalers : Seretide & Sequadra
Nebulizer : Levolin 0.63 & Budecort 0.5
Meds : Unicontin 400, Ivabid 0.5, Pantocid 40, Wysolone 5, Calcimax Forte, Telma H 40, Storvas 10, Musinac 600, Zolfresh 10.

Were there any side-effects of the medicines? If yes, how do you manage them?

I do get water retention & fluctuating sugar count due to my steroid medication. My blood sugar usually stabilises overnight. Due to frequent antibiotic use, I have constant ulcers in my mouth. I have also lost all taste.

What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc) do you consult and how often?

I am consulting only my Pulmonary specialist once in 3-4 months or as required. I am doing physiotherapy (light exercises) on my own with my nurse.

How do you gather information or learn ways to manage your condition?

I get to know about new developments regarding my disease through my Pulmologist, patient Whatsapp groups or surfing the net.

What changes have you made to your lifestyle because of your condition?

I try to avoid junk food and all dairy even though I love milk and milk products. I am generally a poor eater but don’t follow any specific diet.

I have over the years started working from home since I am on oxygen 24 hours. Social life is limited. My sister used to take me for a drive every week but now that too has stopped since I have to release my mucus build-up every 15 minutes. In addition, I have to empty my bladder every 30-40 minutes, which makes it difficult to go out.

Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?

Around 4 months ago, I started taking some kadha which is an ayurvedic potion, but don't know if it is helping or not. I had tried Homeopathy briefly 12 years ago.

How did you mentally/emotionally cope with your condition?

It has not been easy for me. Since the disease has had its ups and downs, it has been quite discouraging. One such episode occurred in 2015, when I suddenly stopped breathing and was taken to the Hospital’s ICU. I was on a ventilator for 4 days before I gained consciousness. I was referred to a Psychologist at that time for depression. He would come meet me every day but it did not have any significant effect on my mental health. Overtime, I have accepted the fact that I can't lead a normal life anymore and adjusted myself accordingly. I know this disease is irreversible and people say that diet and exercise can improve life but that did not happen for me. So I have since 2 years stopped dieting and decided to live life as I want. I don’t want to suffer daily but enjoy what time I have left.

How has your family supported you? Who has been your biggest support/companion through it all?

Have had 100% support from the family. My mother, wife and son have seen me through it all whether at home or at the hospital.

How did your friends treat you? Were you isolated? Did you share your experience with them soon after diagnosis?

On the contrary, friends have been wonderfully supportive, inviting me for all functions and events and visit me regularly.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Every day is a challenge! The biggest challenges are loneliness and physical constraints and how to overcome them.

You must keep yourself busy and occupied, mentally & physically. Try not to ponder over the disease or get depressed, as it will make it worse. Accept that the disease is untreatable but is manageable. So it may help to keep it stable by doing all the right things.

How has your diagnosis changed your life perspectives and ambitions?

Can't think of a clear answer to this except that I try to handle life one day at a time.

What keeps you awake at night?

Regular things like everybody else.

*Name changed on request

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