Tagged: Beginning steps
- This topic has 7 replies, 6 voices, and was last updated 5 months, 3 weeks ago by Kathleen Ryan.
December 15, 2022 at 8:41 am #33883
Hi, I’m starting my PF journey with my dad. It’s not a recent diagnosis but one that has been mismanaged for over a year. He’s 52 and has been coughing for over two years and only recently been breathless on exertion for the past 6 weeks (walking up stairs, slight inclines, physical activity etc). I’ve taken him to a pulmonologist who has ordered him to do a lung function test in addition to blood tests to start the diagnosis.
My dad couldn’t complete the lung function test. He’s unable to exhale long enough for the reading to provide any meaningful information. Not sure if it’s a psychological thing but the lady administering the test said for his age he should definitely go a little longer. He doesn’t believe he can. He exhales, takes a breath and continues exhaling when they want him to do one long breath out. He said on a recent encounter where he had to do a random roadside breathalyser test he attempted it 3 times and wasn’t able to do that either.
Anyways, the lady at the hospital said she would have to call up the pulmonologist to see if there were any other tests they could do that was ‘less patient dependent’. She hasn’t called the pulmonologist yet.
I’m freaking out and stressed. Without this lung function test I don’t think we’ll be able to progress with his diagnosis or get him on any medication to slow it down or find out any further details such as life expectancy.
Do you guys really think my dad can’t do the test? Is there anything I can help him with so he’s able to do the test? Should we go back another day and reattempt the test? Feeling really lost and helpless…
December 15, 2022 at 2:33 pm #33893Linda MaguireParticipant
A diagnosis can be made with a CT scan & is not dependent upon PFT, from what I understand. The PFT gives information about what aspects of breathing & lung function are problematic & which are normal. You might practice a long exhale with your Dad while he is relaxed & not having to “perform”, like during a test. Maybe if you can demonstrate a deep breath in and a long exhale, the two of you can do this together so that he gets comfortable with the process and can practice it in a relaxed setting. Perhaps he’s not taking a deep breath in, so doesn’t have much to exhale. Try having him inhale to a count of 4, then exhale to a count of 4 (or more). When people are anxious, they tend to breathe shallowly instead of from the diaphragm. You can look up diaphragmatic breathing & help him practice this. It is an important relaxation technique, too! There are also breathing exercises that can help increase lung capacity, as well. (google breathing exercises for pulmonary fibrosis). Your Dad’s pulmonologist can help you & your Dad get to a proper diagnosis & treatment, so stay calm & good luck! Linda (dealing with IPF for 7 years now)
December 15, 2022 at 5:37 pm #33900Edward ElliotParticipant
Yes, it can be in his head, but more likely those inhalations can be hard to coordinate when one has shortness of breath. There is a learning curve. Been there.
The PFT’s are tools for monitoring up’s and down’s such as progress or diminishing breathing. Failure to perform the tasks will not alter a diagnosis. So don’t worry. I’ve had a diagnosis of IPF for 5 years. Can’t do the PFT anymore. Now in hospice That’s my sad story.
Years ago I also watched my father fail to learn how to inhale his inhaler. Coordination needed with some more practice.
December 15, 2022 at 2:40 pm #33895Dave SabatelliParticipant
A CAT scan will show the level of fibrosis.
December 15, 2022 at 3:41 pm #33897John K. GrubbParticipant
Immediately sign your father up for a pulmonary physical therapy program. Medicare and most insurance companies will pay for it. The one I just completed was 45 session; I usually did 2 sessions a week – Tuesday and Thursday.
I was in pretty good shape when I started and much better shape after I competed. However, I was amazed at the improvement of people I saw coming into the program and how they improved. I saw people come into the program who could barely walk or talk; after several months they were coming in and doing all sorts of exercises– and they had a smile on their face.
Also by your Dad a device sold OTC and on Amazon called an AirPhysio — it is a simple device that you blow into — it creates some resistance and air baffling in the lungs. Do not know how good it is from a scientific point of view, but it has help me to improve my breathing number — real easy to use.
Try to get your father to take a short walk every day- and over time extend the length.
Talk to Doctor about starting on OFEV– once Dr. clears you to take it, you have to go thru a specialty pharmacy, qualify and have a telephone or Zoom conference with a respiratory therapist — about 6 to 8 weeks before you actually start taking the medicine.
December 15, 2022 at 4:19 pm #33898
Thanks everyone, dad has had the CT scan last year and this year. The pulmonologist wasn’t able to access last years one but for the current one it showed scarring on in a honeycomb pattern on both the bottom lungs in addition to holes from smoking.
I think the pulmonologist wanted to lung function test and blood tests first before deciding whether any prescriptions were necessary.
Dad used to bike and go for walks a lot but has stopped in the past year. He seems to have to visibly lost weight as well. I’ll encourage him to try and go for walks again despite being out of breath.
I’m going to order the AirPhysio to help him practice his breathing. I’ll also go see the GP if there is any rehab program available for him (it’s just hard because he doesn’t understand English and I can’t translate sufficiently…so I’m not sure if there is any rehab program for him in Cantonese or Vietnamese).
December 15, 2022 at 7:22 pm #33904
Also booked in the lung function test again for mid January requesting an interpreter. Will practice the breathing now with Dad before the test. Thanks again everyone and fingers crossed.
December 16, 2022 at 6:58 am #33907Kathleen RyanParticipant
It’s very difficult for me to exhale, and I believe it coordinates to my DLCO – diffusion capacity or exchange of gases. My score is very low. Your dad’s score will be listed on his PF test results. Breathing techniques can be of help.
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