When my father in law first told us of his diagnosis, we had no idea what it was. I thought it is too serious a name to give to a persistent cough. We didn't look it up as we had a young family of our own to raise and any remaining time I have was spent studying for my post grad paper. He didn't look sick nor is he suffering, except for the occasional cough which really didn't seem that bad. This was 5 years ago. Today he has lost roughly 20kg, is constantly relying on an oxygen supply and is confined in his arm chair. The slightest movement leaves him panting and gasping for air. We went thorough many treatments, stem cell treatments, chinese medication, acupuncture, Prednisolone tablets to name a few. It is hard to say if any of them worked at all. This is a sickness where you don't know what caused it and there is no known cure except for lungs transplant. In Malaysia, we understand lungs transplant is not commonly carried out and the success rates is not known. (At least not known to us)
These are 2 sites I find some very useful information,
http://www.medicinenet.com/pulmonary_fibrosis/article.htm
http://www.pulmonaryfibrosis.org/
Many things I read on this 2 sites, we are seeing my father in law living it now. One advise I have is NOT to listen to just anybody. Many people are concerned and tried to help and their advise may not be wrong but it can worsen the situation. Listen to your lung specialist and ask as many questions you need to ask. Do not just take the advise that there is no cure and leave the doctor's office empty handed with no medication. Ask about medications even though it is not proven to work on IPF patients and request to try them. Listen to people who took care of IPF patients or those who actually suffered from it. Do not listen to the auntie from the pasar, or the people trying to sell you supplements from some direct selling company. Go to traditional chinese doctors who have knowledge of IPF and western medication and have treated people with similar conditions.
Lastly, this maybe a disease with no cure but it doesn't hurt to keep a very healthy lifestyle. Exercise is very important to keep whatever lung function you have. It is tempting to give in to the breathlessness and limit your movement. This is the last thing you should do. Continue to exercise to what your body can take and keep at it. Learn to relax and eat healthily. After all, we are all living on borrowed time.
Looking for a dr who can look after pulmonary fibrosis. Any idea? Thx
ReplyDeleteWe went to many doctors over the course of the illness, at the later stage most doctors turned us away. We went to Dr Ampi from Pantai. You can pay him a visit but I let you decide if he is suitable for you.
DeleteTan Sri Datuk Dr. K. Ampikaipakan
Pantai Hospital Kuala Lumpur
Respiratory Physician
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ReplyDeleteMy mom was detected 3 yrs ago and Doc told same thing there is no cure..now lost 10kg already. l have no idea which specialist is reliable now.
ReplyDeleteI'm really sorry to hear that Amanda. This disease is a very cruel disease to have. Sadly what doctors can do to help patient with IPF is very limited. The truly honest doctors (not out to fleece you) will tell you there is nothing much they can do.. or turn you away. What we can all do, is just to keep healthy, exercise regularly, remain positive and hopeful, tackle problems one at a time and face each day with gratefulness. Take care and leave me a mesg any time if you think I can be of help.
DeleteHi Amanda. Sorry to hear about your mom. Support groups are important and beneficial for both patients are carers in situations like these. As you guys know, IPF isn't widely known here. I have found Inspire to be a good resource tool and support hub. I strongly encourage you to check it out.
Deletehttps://www.inspire.com/groups/pulmonary-fibrosis-foundation-caregivers/
All the best...
I have been suffering from Lungs Fibrosis for 15 years with no success. our doctor told me that there is no cure for Lungs Fibrosis I didn't like what he was saying, so I searched the internet for natural treatments for Lungs Fibrosis. I found a particular Doctor and looked at all the testimonials, everything looked good so I ordered for the medication,
ReplyDeleteIt arrived very quickly and I began to take it. Within 2 months of taking them,I was cured, I am glad. contact the doctor at, drbenson833@gmail.com. for yours too
Wow.. You are probably the first case I heard that have been diagnosed and lived with LF for so long. If you could give more information about the medication and where your doctor is practicing would be extremely helpful. BTW I would never order medication online, what more from a doctor using a gmail account. During that difficult period, we were also offered all sorts of cure that claimed to be miracle cure. Of course it wasn't true but just an attempt to con us of our money when we were most desperate. I hope you understand why I'm skeptical. If you have a website and clinical proven results, do post it. Many thanks.
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