I would like to share my learnings and experiences in help treating my mother’s asthma. My mother has had asthma for almost past 20 years. For past couple of years the asthma symptoms had become severe, especially coughing and wheezing despite all the inhaled medicines that she was taking. I am no doctor or specialist in this field however there were some common sense things that I was able to observe and note being a human and a researcher and that is what I would like to share with you (please read my disclaimer).
My mother lives in a metropolitan city in India. She would have consulted about 5-6 different GPs (MBBS qualified) and about 5-6 different consultants (Masters, MD, MS qualified) in past 20 years since she had the first symptoms. For the first couple of years, she contacted private GPs near to our home, as she did not know why she was coughing and becoming breathless at times. Surprisingly one of the first GPs that she contacted, informed her that it was all in her head, she was imagining it, and there was nothing wrong with her! Gradually the asthma symptoms worsen over the years, so severe that she could not even walk for 10 meters or climb stairs without coughing and becoming breathless. She had a persistent productive cough even during the day. The medicines were clearly not working, the inhalers did not seem to have any effect at all.
In the city, most people who could afford, would choose to buy medicines and treatment privately. Also medicines sold in most pharmacies are branded i.e. medicines with certain brand name associated with it and are much more expensive than generic ones, otherwise containing the same drug. It is my view that quite a lot of the private GPs and consultants prescribed medicines of the brands for which they get a commission for prescribing, from the manufacturer and the pharmacies nearby.
Recently my mother visited me in the UK. I could see that her symptoms had worsen and become more severe. While my mother was in the UK, I had to take her to see a nurse in a walk-in clinic for sudden knee pain. In a causal conversation, I asked the nurse about the available treatments for asthma in the UK. The nurse asked to see my mother’s record of spirometry tests for past 6 months. My mother did not have such a record. It was at that moment I realised that it was very important for my mother to have regular spirometry tests and to continuously test whether the medicine was having the desired effect and how the asthma was progressing. (At that time I wondered why didnt those GPs and consultants carry out regular spirometry tests.)
After that I carried out internet research in order to help show my mother a proper and correct way of taking her dry powder inhaler. I showed her the following youtube video.
I observed how my mother took her inhaled medicine, it was then I noticed that my mother was not taking the medicine correctly at all (for past 20 years). Also she was not gargling with water and removing the leftover medicine from her mouth.
As a researcher I thought, my mother has suffered enough, and I wanted to get into the bottom of this. So I did my own internet research on asthma. I decided to get my mother to see the best consultant for asthma in the UK privately. Since my mother was a visitor in the UK, she could not be treated on NHS. I also believed that UK is ahead in the research on asthmatic treatments than in India. I then realised that I will need to produce a record of spirometry tests in order for the consultant to diagnose and treat my mother’s asthma while she was here on this short visit to the UK. So again, I did some internet research on whether I could get/buy a spirometer of my own which I could use it to keep a record of my mother’s asthma. I found a portable and handled Chinese brand CONTEC SP10 Digital Spirometer. The spirometer has rechargeable battery and comes with USB interface to download patient’s data in a computer which could then be printed. The spirometer plots the readings in trend and graph format.
I then searched the internet to learn a correct way to operate the spirometer and conduct the tests. In my search, I came across a very comprehensive and useful spirometry manual explaining everything in detail.
I studied the manual and learnt to conduct spirometry tests as properly and correctly as I could. I started doing regular daily tests and created a printed record for my mother which she could show to the consultant in the UK. I also understood the reversibility test (test to see if the inhaled medicine work i.e. spirometry tests before and after my mother had the inhaled medicine). From the results, I could clearly see that the medicine was not working at all, there was no reversibility.
Then I looked for the best or one of the best consultants for asthma in the UK. I found one such consultant and booked an appointment for my mother. On the first visit, the consultant carried out spirometry tests. I showed the previous test results to the doctor and he confirmed my findings. The consultant was worried and informed us that my mother’s symptoms were quite severe and she needed urgent medical attention or even hospitalisation. In order to be 100% sure that the symptoms were of asthma and also to reduce the severity due to the inflammation, the consultant prescribed a course of steroid tablets. While my mother was taking the steroid tablets, I kept regular daily record of her spirometry tests at home. In a second follow up appointment after a week I showed the spirometry tests results to the consultant. The consultant also conducted a spirometry tests and confirmed the same by comparing the results with the previous test. Since I informed the consultant that my mother could not take the powered inhaler properly, he changed the inhaler type and prescribed a metered dose inhaler which generated a mist of medicine to be inhaled together with a spacer. The following youtube video shows how to use such an inhaler.
After taking the medicine with this type of inhaler and the spacer, my mother’s asthma symptoms started getting reduced slowly, particularly the coughing and wheezing. My mother then went back to India and continued taking her metered dose inhaler with a spacer. She carried the portable spirometer with her in order to continue to keep the record of her asthma at home in India :).
I am happy to know that her severe coughing has stopped. I am not saying that she is cured however, I could clearly see the difference before and after she started the prescribed medicines by the consultant in the UK. She is now managing her asthma much better than previously. Atleast there is no persistent coughing and wheezing. She could sleep well at night. This was not the case before, on the contrary the symptoms were worsening. The consultant in the UK was the guardian angel for my mother. I can say he pretty much saved my mother’s life.
Here is my experience on the treatment of Asthma that my mother received in Ahemdabad, India:
- All of the consultants that she consulted, prescribed only powder based manual inhalers. Every new consultant she visited, would change the brand and make of the inhaler but the active drug inside remained pretty much the same.
- These consultants/specialists would typically conduct a spirometry test only once when my mother would go to see them for the first time however, they would not carry out the follow-on regular tests in order keep a record and see the effect of the medicines that they were prescribing.
- None of the consultants or GPs informed or showed her properly how correctly to administer the inhaled medicine using the inhaler.
- None of the consultants or GPs informed her that she needs to gargle with water and remove (spit) the residual medicine from her mouth after taking the inhaler.
- None of the GPs and consultants informed the reason behind this, this is because any medicine remained in her mouth was useless. The inhaled medicine was only effective in her lungs. As a result the medicine would have gone in her stomach for past 20 years and caused a lot of side-effects.
- None of the GPs or consultants prescribed steroid therapy ever since she had the asthma, despite it had become severe.
- Before coming to the UK, she had seen a new consultant who even suggested that she had throat problem. The consultant also sent a camera down her throat to inspect.
- While my mother was in the UK and before finding the consultant in the UK we thought we would try a famous consultant in Mumbai. The consultant would not even look at the spirometry tests that we carried out at home using the portable spirometer just because they were not done and paid for in his clinic despite paying his consultancy fees beforehand. I even went to great lengths to format the test results in a similar format that the spirometry machine in his clinic would have produced.
After all this, I lost my confidence in the asthma consultants in the city. They did not seem to know very basic things. One important thing I can not emphasise enough is, if you are coughing and wheezing despite taking inhaler medications then your asthma is not managed, it is not controlled, you need to do something about it, something is not working, perhaps change your doctor.
By writing and sharing this, I hope to help others like my mother as I believe my mother suffered unnecessarily for almost 20 years.