IPF

[Suj28]

Hello,

My dad was diagnosed with IPF a couple of years ago, he took a breathing test in October 2015 which showed his lungs were at about 70%, he has now taken another test and it is at 53%. I'd that normal to change so quickly? He has also been given medication pirfenidone. Anyone using this? 

thanks

[Jessy11]

Hi Suj28, welcome to our forum. I'm sorry to hear your Dad has been diagnosed with IPF.

 I'm afraid I can't help you but I know members here who have this condition & I'm sure someone will be along soon to answer your questions. 

Let us know how you get on with your Dad & hope you get the help you need 💐

[Hidden]

G'day Suj28

Sorry to see you need to use this forum, but glad that you did find us.

IPF is a real mystery today, even to the medico's, with its, at times, rapid escalation and then slowing down and sometimes almost stopping. There is no magic wand to determine how fast the disease will progress.

When you father had the spirometry test done the Dr's would have had the results, hopefully you can get a copy.  One test is the DLCO.   The DLCO (or as it is sometimes shown TLCO) is the reading (given in %). This is % of oxygen which passes thru the lungs and into the bloodstream, and also incorporates the % of carbon monoxide exhaled. So if your dad's latest results show 53% then he is using  aprox half of the normal range.

The % can change abnormally, especially if the patient is not well on the day and can also alter depending on the test equipment .

My wife, Susan (has IPF),  had a reading of 28% and 3 months later 40%, so variation can depend  on many things. Her current DLCO is 28% and my wife is on the transplant waiting list.

Is you dad on oxygen? and do you have an oximeter?

Pirfenidone is the latest drug, along with Ofev in treating IPF, with very good results in some patients, slowing down the disease. It is used in the USA under the name of Esbriet.

Hope this info will help you.

Best wishes

Will (Australia)

[Offcut]

Like a lot of test they are only based on that day so it could of been a bad day?  I have many arguments over my stats I had a GP pop the oximeter on and it showed 96% after I was rested, but he left it on and we both watched it drop to 90% all on it's own and All I got was an OHH?

[Suj28]

thanks for replying.. No my dad is not on oxygen, he does get out of breath but only after a long walk or some activity.. I'm just hoping it was a bad day for the reading! No we don't have an oximeter, but I may get him one.... 

I have also read that is can hereditry? As my grandad died from it and I believe my great grandad did too? Is that right? 

[Hidden in reply to Suj28]

Suj28

Thank you for replying.

There is a university in the USA attempting to undertake research on Genetic transference of IPF.

At the present time there are numerous cases of family members who have it or have passed with the disease.But is the common denominator Genetic, or, at one time, were they all exposed to to whatever caused the illness? 

We just do not know unless there is a specific cause i.e birds or chemical sprays, then it becomes PF. In my wife's case it is IPF The  I representing Idiopathic = Unknown cause.

Please do purchase an Oximeter, it is the only way for you to be able to monitor your father's sats. Do not purchase an expensive one as the units on sale for around $30 AUD work well. The one we have is a Contec brand Model CMS50DL.    Also have a notebook on hand. It is very important to record all aspects of his health.

It is also important that his o2 levels remain above 88, some prefer 90.

Ask dad to sit down and after a minute fit the oximeter and wait for the results. Record these on the front cover of the notebook.

When the SOB (shortness of breath) occurs  you need to fit the oximeter, get him to sit down and see how long it takes for his o2 levels to go back into the 90's and also the time for his pulse to decrease. Record the low levels and the time for his sats to return to normal. Write in your book what dad was doing when these SOB occurred. Was he walking, standing up after eating a meal,or moving from a warm home to the garden (drop in temp).

All this info is very handy to have when he next visit his Dr. Please take your oximeter with you and ask the Dr to use his oximeter and then try your one. It will give you  an indication as to how accurate your unit is. Our one is within 1 point of the Dr's.

Is your dad having coughing attacks?

I trust the information will help you

GOD Bless

Will (Australia)

[HajarIsmail in reply to Hidden]

Hi Will

Thank you for the infor. My mum has been diagnosed with IPF- she has been leading a healthy lifestyle so its very surprising she got it but I guess the cause is unknown as u said Idiopathic.

How is your wife doing if you dont mind me asking

And suj28 hope you are doing well.