What are the stages of IPF?

[grannyjeanette]

I am 69 and was diagnosed with IPF about a year ago. I'm still able to do small chores. Vacuuming is difficult and even making the bed, knocks me out. I go for short walks but have to take my oxygen tank with me. Anybody else at this state?

[Katinka46]

I do not have IPF so I can't say, but I think all lung diseases are varied and peculiar to the individual, and it is not easy for anyone, doctors included, to give a clear description of the process. There are special patient forums for those with IPF and it may be possible to get more specific help there. However, there are many people here with IPF and will happily share their understanding. And it is a brilliant site with the most supportive group of people.

All the best

K xx

[Hidden]

G'day Jeanette,

My wife ,Susan, was diagnosed with IPF 2 years ago, and the road we travel is a rocky one.

Do you have an oximeter,and are you seeing a lung specialist? Have you had a spirometry test done?

Susan is on o2 and has a portable concentrator and o2 cylinders for external use and a home concentrator (frees up her hands).

Main early symptoms are SOB, clubbing of the fingers and toes, coughing, trouble climbing stairs or a hill.

Please do not look on Dr Google for info as most posts are old and do not give a real perspective as to the current improvements in dealing with this "beast" of a disease.

The most important function is exercise, this greatly aids anyone with lung fibrosis.

Susan is on the waiting list for a bilateral lung Tx at present.

If you desire any further info I am only a keyboard away.

Will (Australia)

[grannyjeanette in reply to Hidden]

Thank you for your response Will. Sorry to hear about your wife. This disease certainly does alter your lifestyle. So many things I used to take for granted, I find very difficult now.

I am seeing a lung specialist. I had a surgical biopsy done July 31 2015. This confirmed that I am in the moderate stage of IPF. It certainly has changed our lifestyle. I also have cylinders to use for travelling out of the home and a home concentrator.

I have had breathing tests done about every 3 months and am due for another on June 22nd. The last one I had the dr. said that there wasn't much change from the time before. This was good news to us.

Curious to know what kind of exercise Susan does. I do go for walks but even doing this has become more difficult.

Again, thank you for your response.

Jeanette

Canada

[Hidden in reply to Hidden]

G'day Jeanette

My apologies, I did not see your return reply last month.

Susan's exercises:: At rehab clinic

Sitting breathing exercises

Stretching using elastic fabric ,Diff colors represent harder tension

Treadmill

Steps

Exercise bike

Weights (hand type only)

Walking (under supervision)

At home

Susan has a treadmill and work bench which she lies on and uses hand weights to 4k

Regarding your initial post Stages of IPF

We have learned that there are no stages

The three levels of the disease are

Slight

Moderate

Severe

These are determined by the spirometry test.

The DLCO or as some use TLCO is used to work out your level.

85% ..65% slight

60...45 Moderate

40% and under Severe

Severe means you qualify for Tx assesment here in Australia.

Susan,s DLCO is 25%

This means her lungs have shrunk by 75% and the lung cavity has also reduced.

Hope this may help you

Will

[Catsmam in reply to Hidden]

Hi burraboy, I've been reading your posts and learned a lot I like the way you've explained things. My hubby's TLCO was 2.7 what does this mean please

[Hidden in reply to Catsmam]

G'day Catsmam

Thank you for your email.

When looking at the TLCO it should be shown as a %.

If you can send me this I can give you an opinion.

Hope your hubby is handling the situation with a positive outlook.

This disease can be beaten.

Will

[joke]

Hi Jeanette

I was diagnosed with onset IPF(usual) March 2013 spirometry test then showed FVC of 51% I embarked on a regime of Tai Chi and walking and this gradually upped to 66% my last one this May showed 78% so exercise works and is definitely our friend whilst bed and sofa are our enemies.

thing is not to overdo things but have a look at this youtube.com/user/UHNPatient...

regards Kevin