Living with Idiopathic Pulmonary Fibrosis in Malaysia

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.

Living With Idiopathic Pulmonary Fibrosis in Malaysia

Note:

  1. 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.
  2. 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.."

"Like what?"

"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.

 

Are you taking care of a patient living with Idiopathic Pulmonary Fibrosis in Malaysia, or are you currently living with Idiopathic Pulmonary Fibrosis? I'll love to connect! Do share how you're doing in the comment section below.

44 thoughts on “Living with Idiopathic Pulmonary Fibrosis in Malaysia

  1. Hi Jenne,
    Glad to have found your blog. My sister was diagnosed with IPF recently. Private hospital recommended my sister to UM. Just ask for your opinion, do you think that yoga breath helpful on it?

    • Hey there Hui Teng,

      Nice to see you here! That’s a very good question. I might not be the best person to answer that, but if you want my opnion, there’s no study that has proven yoga / breathing exercise’s benefit for IPF patients per se. However, for me, if the patient can perform yoga / breathing exercise while maintaining oxygen saturation (not becoming increasingly breathless) during the session, I don’t see why not, to be honest.

      I’ve did a quick search on the net and found this article – it’s a very small study done involving 7 IPF patients and it looks into the effect of yoga on them. It concludes that yoga is a safe and feasible exercise intervention for IPF, but I guess a larger and longer study looking on the effects will be needed to reach a conclusion. Hope that helps! Send my regards to your sister 🙂

  2. Hi there. Can I get your contact through email, whatsapp regarding IPF? I would like to know more about this disease.

  3. Hi!

    I’m a 36 years old male non-smoker and started having persistent coughing over the past one year and have tried different steroid inhalers with no improvements. Recently admitted to hospital twice between 5-6 months gap due to pneumonia. Did some scans and respiratory doctor suspect it could be ILD and he is referring me to a professor at UMMC specialist center. Will try to consult him to investigate further soon.

    I’ve read about ILD in the internet and it does sounds very scary. Has anyone tried traditional Chinese medicines also? Anyway, glad to find this place and knowing I’m not alone in this world.

    • Hey there Russel!

      Glad that your treating physician is doing the necessary workup for your pneumonia and suspected ILD – detecting early definitely makes a lot of difference. To be honest, my father has not tried any, and we have not came across any research proving traditional Chinese medicine’s treating effect for ILDs.

      Hope to see you around too! Do take good care of yourself 🙂

  4. Hi Jenne,
    I’m glad to come across your article. My dad had been coughing for 3 months now and finally permitted me to bring him to private hospital for tests. He has been diligently going to GH check ups. They could only find that he has problem in his lungs but not pin point his problem.

    He is now in Johor Specialist just finished his CT scan and doctor suspects he is having pneumonia & fibrosis. He is 77 + years old. Doctor referred him to in-house respiratory specialist. My father is worried sick now that doctor told him there is no cure & medication to arrest fibrosis cost 10k each month. I dropped you an email. Appreciate your reply.
    Thank you

    • Hey Kala,

      Glad to connect too! So sorry to hear about your dad. Glad that they finally worked out his condition.
      Sure sure, shot you an email back. Sending love to you and your family! Take care!

  5. Hi, im from Kuala Lumpur. My mother in law just diagnosed Idiopathic Pulmonary Fibrosis today. I was so lucky i found this blog to understand more on this disease. She was taking prednisone 20mg per day.

    Can you introduce some lung specialises to me. Recently her doctor are at institute perubatan respiratory kuala lumpur near jalan Pahang round about. We are urgently worried because this is the first time to know this is a very serious disease. Im just hope to get a better doctor to her.

    Thank you

    • Hey Agnes,

      Nice to meet you over here! Ah I guess you and your family must be having a hard time. Well to be honest I do not know a lot of specialists, but I’ll shoot you a mail and see what we can do from there. Do take care!

  6. Hello Jenne,
    My husband was diagnosed with IPF in September 2017. He had started a couple of years ago getting short of breath and it kept getting worse and he had a little hacking cough, which he said he thought was caused by a tickle in his throat. He mentioned this all to his primary doctor and she did an x-ray and said his lungs looked fine and that he needed to start exercising more. I need to mention he has heart disease and had some stints put in years ago(he was having some chest pains and they ended up doing 3 stints. also has an aeortic aneurysm that has been being monitored for years(it was found by the doctors that put his stints in). It is located between his heart and kidney. It was a little larger than a 3 when it was found and has been being monitored for growth. My husband’s mother and his 2 older brothers also had IPF. My husband used st smoke but quit about 10 years ago plus he also worked in a textile factory for 35 years and they made yarn, so he has had years of exposure to smoke and fibers plus his hereditary factor of his mom and brothers having it. His mom passed away many years ago, when my husband was only 25 (my husband’s 2 older brothers were by his mom’s first marriage and after her 1st husband passed, which was his 2 brother’s daddy, his mom remarried and she had 3 more children in her mid 40’s and my husband was the middle child of that marriage, so his brothers were 14 and 11=years older than my husband. When his mom was sick back during the 1960’s and until she passed in 1974 and
    all was not known about IPF as now. His brothers are deceased now also. They both passed at the age of about 74(about the same age as their mom passed). Anyway, after his brother passed they tested my husband for IPF but he did not have it at that time but about 2 years ago was when his symptoms started of the little cough and gradually his shortness of breath until they diagnosed him last September 2017. He is taking Esbriet and is on 2.5 liters of oxygen at night and when he needs it in the daytime, which at this time he uses it a little during the day but not much, except if he has to walk farther than he usually,ly does. He is unable to walk very far without getting very winded. He still gets out of the house but doesn’t feel like going out and doing things like he used to. I am worried about him and try to encourage him when he feels down. The Esbriet people really follow up with him and monitor how he is doing as well as his Doctor that is a lung Dr. and a specialist in dealing with IPF and the same Dr that his 2 brothers were treated by also. Neither of his brothers took Esbriet because it has just started being here used in the USA about 2 or 3 years but was used in Europe 5 years before being approved by the FDA here in the USA, from what I have read, but so thankful my husband is able to use it. My husband’s aneurysm is now a 4.9(he is going to a specialist for it in the same city that his lung specialist is in, Greenville, NC which is only about 65 miles from where we live). We know in the next year my hipusband will have to be operated on due to the size of his aneurysm and 5 is as large as they ,eat them grow before having to do surgery. I am sorry this is so long but as you see my husband has quite a bit going on. Johnny, my husband, just turned 69 in April 2018. Thank you so much and I am praying that the Esbriet will hopefully slow the progression of Johnny’s IPF. God bless your daddy and each of you and praying for the best for him and each of you.

    • Hey there Shirley,

      Thanks for sharing your story Shirley. Interesting to see how family history and his work in the textile factory has some association with IPF. Good to see that Johnny is put on Esbriet early! Hopefully taking Esbriet is able to slow down the progress of IPF and may all be well with his surgery next year 🙂 Do pass a belated happy birthday to Johnny and do take care! God bless you and Johnny too!

  7. Hi Jenne.

    Glad to have found your blog and to share with someone my experience too. I can totally relate to your dad’s condition, except mine’s not IPF. I was diagnosed in May 2016 with NSIP – undifferentiated autoimmune type of ILD.

    Also for the benefit of others who reads this – I was on highest dose of 40mg prednisone when first diagnosed and my condition was stable in early 2017 after about 9 months of staying on the medication.

    But in early Jan this year, I was hospitalized twice in Shanghai (My job was based in Shanghai) due to pneumonia and it was the winter season as well. I came back to Malaysia after the discharge and my condition hasn’t gotten any better since then.

    My lung function has decreased by 10% since the episode and I’m now on 24/7 oxygen and unable to manage much of my daily simple activities without getting tired and breathless. I’m also currently on 30mg prednisone and started Cellcept (steroid sparing agent) early this month to spare the side effects of prednisone. With these 2 immunosuppressant, I cannot afford to fall sick anymore.

    It has only been 2 years since i was diagnosed and it’s pretty scary that my condition has worsen pretty fast. I’m in fact starting my research on transplant in Malaysia. Wanted to see if you had done any research before (I know that your dad didn’t to go with transplant as an option).

    I’m skeptical as well, but needed to find myself some options. Could you or anyone here share with me more of what you know about lung transplantation in Malaysia?

    It’s just nice to have a group of people here who understand one another…. Hugs to all.

    • Hey there b!

      Great to see you here and thanks for your comment! It’s an amazing thing to see how sharing information about my dad’s IPF online can develop so many relationships with all of the people that has the disease / have someone they love having pulmonary fibrosis. I see that you are on double immunosuppressant now – do take care! So sorry for the late reply, spent some time researching online before getting back to you here.

      I’ve went through the information that I can get hold, but unfortunately there’s so little that I can find!
      As of what I know, heart and lung transplantation in Malaysia is still not as common as kidney transplant in Malaysia.
      The most complete data that I can find is only from here: http://www.mst.org.my/ntrsite/publications_11thReport2015.htm (the National Transplant Registry), but the latest data is only until 2015.

      Do download the “Chapter 3 Heart and Lung Transplantation” on the page and have a look starting at Page 12. It’s a little left behind in time, but it’s a very valuable set of numbers we can look at, definitely.

      First lung transplant in Malaysia is started in 2005, and until 2015, there’s only 10 patients underwent lung transplant (including heart and lung transplant). Do also look at the number of patients alive at 31st December of each year.. There’s 2 patients alive at the end of 2015.
      I’ll advise that you don’t solely decide on whether to go through lung transplant or not based on the figures in the registry – it’s a high risk procedure, but there’s so many other factors that play roles in the recovery of the patient (patient’s own risk factor, health condition, occurrence of rejection towards the new organ etc).

      My best advice is still to talk to your treating physician to know more about lung transplant, the benefits and the risks associated, most likely they will refer you to IPR (the Institut Perubatan Respiratori) in Kuala Lumpur for a thorough assessment and discussion (like what my father went through, but in the end decided not to go for it).

      Hope this helps!

  8. My mom has had it since 2013. She is on continuous flow oxygen and has recently been given the medicine Esbriet. She has only been taking it for approximately 30 days. We don’t know if it is helping yet or not. She is bedridden for the most part. She can still get up to go to the bathroom and the kitchen but it puts her oxygen down in the 70s. She keeps her oxygen at 6 liters.

    • Hey Julie,

      Before I say about any other things, a big hug to you and your family members who are taking care of your mother – I know it wouldn’t be easy. I see, but medication like Esbriet and Ofev do not usually show any drastic improvements – their main function is to help with slowing down the progress of hardening of the lungs (lung fibrosis). Maybe you guys can ask the treating doctors how well is your mom performing on lung function tests – it sort of gives you a picture about whether the disease is progressing. It is the same to my dad too! Any walking or even standing up from lying position drops his oxygen levels drastically, making him breathless. Take care, and keep me updated about your mom! Best wishes.

  9. hi..my mom just had been diagnosed with Lung Fibrosis yesterday..but im not sure whether it is similar with IPF.. but the symptoms sounds similar..tired..sleep a lot..dry cough (difficult to stop once initiated)..the doctor suggest to do lung biopsy to investigate more. the doctor did mentioned that my mom’s lung is hardening and thickening. but there is no medication given to my mom.im still not sure.

    • Hey there Nina,

      The symptoms do sound quite the same, but there are many many types of lung fibrosis out there. Further investigating is always a right thing to do, at least for me. Do give the treating doctors more time to investigate before starting any treatment. Best wishes for you! Take care!

  10. Hii,i read ur dad is a smoker. so isnt this disease caused by smoking?can i email u regarding this.is smoking a cause or risk factor?

    • Hey there mm,

      Yes my father is an ex-smoker. To say that IPF is caused by smoking is not necessarily right – the cause of this disease is still largely unknown. There are only hypothesis that the disease is initiated by exposure to agents like smoking, environmental pollutants, environmental dusts.. (source) The researchers think that the agents initiated an initial inflammatory response in the lungs, which after that leads to more and more damage, which in the end leads to IPF, but nothing is certain yet at the moment :/

  11. My husband was diagnosed in 2016. He was mild in 2017 spring. In November he became severe. He is in a flare up on 60 mg of prednisone and tried to be weaned down to 20 mg but he now has pneumonia and on the bipap machine since Tuesday. Can anyone give any advice?

    • Hi Andi,

      I’m so sorry to hear what has happened. Unfortunately, for patients with Idiopathic Pulmonary Fibrosis, any infection (eg pneumonia) can affect the lung badly (and as it was already scarred by the fibrosis, it has only limited amount of lung tissue left, which is now affected by infection). It’s up to how the medical team is bringing down the infection, and to help with the breathing. Be strong Andi! My prayers are with you and your husband.

  12. Hi there! I am in the US and my Mother was recently diagnosed with IPF. She is waiting a CT Scan and a sleep study before Oxygen can be prescribed. Her symptoms sound similare to your fathers. The shortness of breath in doing normal tasks… Short walks to do a task in her home. She sleeps ALOT! So we are trying to make her as comfortable as possible… Cough drops are comforting to her and thank you for sharing the Ginger Tea. I am going to try this tomorrow

    • Hi Sherry! I see, is she on oxygen now? Hope the ginger tea is working for her. Let me know how it goes!
      Send my greetings to your mother 🙂 Do take care too, IPF caregiver is a tough job!

  13. Our dad passed away few days ago from IPF. We understand how these disease affects people and their caregivers. We still have boxes of Pirfenex (Pirfenidone 200mg). These are purchased from India directly. If you know anyone suffering from IPF and would like to get hold of these medicine, please email me .We are located in Penang.

    We also have two Philips oxygen concentrators ( Everflo & SimplyGo ) that are sitting at home now. If anyone needs these, please email me too.

    • Hi Gloria! My condolence to you and your family. So sorry for your loss.
      Sure, will let you know if I come across anyone who needs them. (To anyone reading this, feel free to drop Gloria an email too if you need these)
      Would like to thank you in advance for your kind heart!

  14. Hi my father just recently passed away due to IPF . Is your father still taking nintadenib ? Because I’d like to donate it

    • Hi there Yong Beng! Thanks for your comment. Very sorry for your loss. Yes, my dad is still on Nintedanib. We are getting it for him as long as we could (it’s just too expensive). I see, would you mind letting me know more about your dad? Are you getting Nintedanib for your dad on your own financial terms? That will be quite a huge sum to pay for.

  15. Hello, may I connect with you to learn a little bit more about your fathers journey to diagnosis and also your treating physician?

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