Last updated on July 22nd, 2018
Disclaimer: This article on UnderMyWhiteCoat.com about living with Idiopathic Pulmonary Fibrosis in Malaysia is created for informational purposes only. This article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any question you have.
Ever notice that the ability to walk around freely and breathe in fresh air whenever you want is a blessing?
It is, because there's a small fraction of people, for example, the patients living with Idiopathic Pulmonary Fibrosis* - they just don't have that privilege.
My dad is one of them.
- This is how my dad lives with Idiopathic Pulmonary Fibrosis in Malaysia. Medical practice and the way of living with the disease might vary from country to country.
- This article contains some medical jargon. They are marked with asterisk (*) and I'll try my best in providing explanation and links to read more soon.
It all started from the end of 2015
One day, my mom pulled me to a corner of the house and whispered in my ears.
"Hey. Is it common for someone at dad's age to like.. hmm.."
"Having difficulties to pass urine?"
"What difficulties are you talking about?" I asked. I have the enlarging prostate in my mind. But wait, at 56 years of age? Well, everything is possible in medicine, but wouldn't that be a bit early?
"Like, he always wets his pants a little after going to the toilet. He said it felt like he loses the ability to sort of, pass all the urine into the toilet bowl. So, some of it wets his pants.." Her voice trailed off, finding it a bit embarrassing to continue.
"It's okay. I'll see if we can get dad to see the urologist."
Dad refused. We sort of dropped the issue after a while.
Is it really COPD?
My brother was working in a hospital across the South China Sea. I was in Kuala Lumpur juggling with my medical studies. My sister was in the UK for her college. Things looked normal. We were busy. We see dad and mom once every few weeks.
It looked normal, but something didn't feel quite right.
Mom started giving us extra phone calls, telling us that dad was coughing more than ever. We asked mom to bring dad to a physician. All of us know my dad had been smoking during his younger days, so Chronic Obstructive Pulmonary Disease* came to the doctor's, and our minds very easily.
"Mom, it's something we call the COPD. It's a common disease that affects someone who smokes. It's kind of like asthma, but not really asthma."
I remember showing dad and mom YouTube videos of explanation for COPD, and how the medication prescribed by the doctor he went to will help. I explain that inhaling the medication will sort of open up the passageway in dad's lungs for breathing. Those passageways might be narrowed in dad's lungs.
"Hey Jenne, look at this," Dad happily showed the inhaler to me. "See how this thing creates a hole in the capsule, and when I suck at the mouthpiece, the medicine will sort of be sucked into my body."
Dad followed the prescription religiously, sucking in bronchodilators* that should help with his coughing.
Except that it didn't.
Is there anything that we're missing out?
Few months passed by.
Strange, the medication didn't seem to work, at all. It even looks like it aggravated his cough.
We went home and was shocked to find out my father was constantly wanting to sleep. Neglecting his meals, he's saying that he's too tired for everything.
After taking a few bites of his regular meal, he told us that he would want to go to bed. He's wanting to sleep after talking to us briefly. He doesn't even feel like walking to the bathroom to take shower. He's tired all the time.
What has gone wrong?
The true diagnosis
I wouldn't forget that day. It still hurts me as I'm typing it out.
I was sitting in front of the CT Scan room with my dad and mom, waiting for my dad's turn for a scan. Mom was crying. Dad was quiet in thoughts. This was the third doctor that we've gone to for my dad's cough.
The doctor just told us a few minutes ago that it's hard to say anything about it, and urged my dad to get a scan on that day itself. It's likely not COPD. It's likely something more serious.
The doctor kept quiet while he's looking at the films from the scan when we're back in his consultation room. "I'm writing a referral for you," he said. "I'm not an expert in treating this kind of lung disease, but I know someone who does."
And while we were relieved that it's not something nasty like cancer, it's something almost equivalent - a disease with no apparent cause and medication to treat. A disease which can only be treated by a lung transplant.
Idiopathic Pulmonary Fibrosis
The diagnosis was so hard to accept. A disease that I have only learned in pathology lectures. A disease that we've learned to offer as differential diagnosis as a medical student when we heard fine crepitation* at the base of lungs of the patient.
And why suddenly, this rare disease is my dad's diagnosis?
I wouldn't forget what my dad said to me that day, when he finally had supplementary oxygen connected to him via a nasal canula*.
"Thank you, thank you so much," he said to the doctor. His grayish face was finally turning red. His dark red lips were slowly turning to pink. He took in deep breaths, deep breaths, and more deep breaths.
We finally understood everything - the cough, the tiredness, the reason why the inhaler wasn't working. His lung is simply hardened and lost some ability to utilize oxygen from normal room air. He needed more oxygen.
We missed the diagnosis.
The journey of living with Idiopathic Pulmonary Fibrosis in Malaysia
Here is some information about how my dad is living with Idiopathic Pulmonary Fibrosis in Malaysia, since his diagnosis. Again, this is not intended to be a substitute for professional medical advice, diagnosis, or treatment. This is solely shared for informational purpose only.
My dad is:
- Put on an oxygen concentrator* since diagnosis. He now requires an oxygen flow rate of 5 liters per minute.
- Using portable oxygen cylinders for driving / eating out / outing. We have three now at home, requiring refills every 2 to 3 weeks. More on that in another article soon.
- On prednisolone and Vargatef (Nintedanib). Nintedanib is extremely pricey and we aren't sure if this is something we can afford to continue paying for.
- Attending regular follow-up of his disease with a respiratory physician, having 6-minute walking test* and peak flow spirometry* during his visit to see how he's doing.
- Still having bouts of cough (characteristic: loud, difficult to stop once initiated) that will wake him up from sleep. I regard this as the main thing affecting his quality of life. We've tried everything that could work to stop his cough, but so far, only certain cough lozenges and water boiled with ginger is providing temporary relief. (Again, not medical advice, for sharing purpose only.)
- Breathless upon walking short distances. This includes walking from the bedroom to the toilet. He is comfortable at rest.
- Turning down the option of lung transplantation because we were explained by the doctors that lung transplantation is not without risk (a lot of issues must be taken care of after transplantation as well, eg. graft rejection*, being put on immunosuppressants* that will bring other problems, etc) and that lung transplantation is just not that common in Malaysia (source). We've heard of successful lung transplant cases too, but we respect my dad's decision to not going for it.
My message to you
- If you found this article because you are living with Idiopathic Pulmonary Fibrosis, or that you have a loved one who is living with it, I want to give you a hug. Accepting it is difficult. Living with it requires so much strength that no one will know.
- In Asia, IPF is a somewhat rare disease with an incidence rate of 0.6 to 3.4 per 100,000 person years* (source). It's important that physicians keep this in their mind, but this might be a rare disease which some doctors never encounter in their whole practice.
- The fact that my brother and I are medically trained but still missed the diagnosis should tell you something. First, we might be not attentive enough to our parents' conditions. Second, this disease is such a rare shot that it's not even on our mind to consider it. Third, let's spend more time with our parents and truly pay attention to what is happening around them.
- If you are a caregiver to a patient living with Idiopathic Pulmonary Fibrosis, you have to buck up. Learn more about the disease in any way you can. Ask questions. Research. Comfort the patient. Make his life after the diagnosis a memory to cherish.
- If you are living with Idiopathic Pulmonary Fibrosis in Malaysia - information might be scarce and difficult to find. Do not fret - Talk to your physician or other patients. Utilize the internet. Participate in online forums who talk about the same disease. Find support.