[Kate Smithson]

Hello Yolanda:

As I’m not always hungry at the time I’m due to take my ESBRIET tablet,  I have found that eating 1/2 a banana or a piece of cheese works. So far no nausea while doing this.  I’ve been able to maintain the full dose for two years now and in the 3 years since my diagnosis, my PF test results have remained stable.  Best wishes as you continue your medication!

[Kate Smithson]

Carol:

Are you walking/exercising WITH oxygen?

My pulmonologist prescribed using oxygen during exercise, to try to keep the saturation levels above 88.  Mine had dropped to 78 while I was doing the 6 minutes test and while I walked outdoors for exercise. I said I stopped when I felt out of breath and resumed walking when the oxygen levels returned above 90 (this was usually in a minute or two). He indicated I was OK without it as long as the levels came back quickly and I was careful to monitor it. I take my oximeter with me when I walk.

I’ve resisted starting oxygen but feel that the time is coming when I’ll need it especially when air travel resumes.

I’m  in Canada and PF tests are normally done every 3-4 months. The pulmonologist (consultant) interprets the results afterward, comparing results and general progression of the disease. Tests have been a little less frequent during COVID, and consults have been by phone, but unhurried and all questions are answered.
I’m nearing 3 years (August 2021) since my diagnosis and have been on anti-fibrotic meds for 2 1/2 years. I started on OFEV briefly but discontinued due to a ‘possible’ angina-like reaction. (This was a precautionary measure as cardiology tests indicated no evidence of further heart issues.  It may have been totally unrelated or a GERD symptom.)   I then switched to ESBRIET for the past two years.  Both my pulmonologist and I believe that this drug therapy is responsible for minimal change in my test results. I also had a HD chest CT scan last November and again almost no change was noted re fibrosis in the lungs., from the time of diagnosis.
I have also been very blessed to have minimal side effects from either approved drug and  to have the drug costs covered by the government.  As in UK, the benefits must be shown through annual testing, but as I have 3-4 tests per year, one lower score doesn’t negate all.
My biggest complaint, like most of the other participants is the productive cough -some days worse than others.  I notice that almost nobody in this thread has the dry cough that is usually listed as a main feature of IPF.  So far, a daily allergy tablet, Dymista nasal spray, Fishermen’s Friend lozenges and Mucus Relief cough syrup (taken occasionally) have reduced post-nasal drip (which I never had prior to IPF) and kept the cough and clear mucus manageable, though still annoying.
Drinking plenty of water does seem to help.
Again, my pulmonologist reminded me that all coughing is not necessarily a sign on of increased fibrosis.  Other common causes are post-nasal drip, particularly when there is clear mucus produced, allergies and gastric reflux (also common in 80% of IPF patients).

I would encourage anyone who is offered either of the approved anti-fibrotic medications, OFEV or ESBRIET,  to try it. While 35% of patients are reported to have side effects, that leaves 65% who don’t!   If you can tolerate the drugs, the benefits seem to be considerable.  My tests all seem to be within the normal range of acceptable variation, with a slight overall decline in almost 3 years.

I love the encouragement and optimism of the participants in this forum.  Thank you all for sharing your journey, your helpful ideas, and your spirit!

Kate

[Kate Smithson]

Thank you all who responded to my question re POC’s.  I am so appreciative of the information shared.  Your comments have given me much to read before getting set up.
In checking with an equipment supplier, I learned that the OxyGo 5 is manufactured by Inogen and is the name used for the Canadian brand. Apparently they are the same.

I re-read Charlene’s excellent article on various issues facing a young adult with IPF and was so encouraged by her comments that using oxygen had not prevented her from participating in life.  (I have been resisting using oxygen, thinking it signalled the end of ‘normal’ living. )

Your attitude and courage are an inspiration, Charlene.  May you soon be one of the recipients of new lungs and enjoy many years with a renewed lease on life!

Kate

 

[Kate Smithson]

Sorry for all of us ‘coughers’, (and those who have to listen to us!), but glad to read the comments!
I was diagnosed with IPF two years ago.  The cough was what led to my diagnosis but it was quite mild until the past 6 months, when it became more frequent and lasted longer.  At times now I wake, coughing.
Life is still pretty normal for me, apart from the cough – ie. no oxygen yet, but I do tire more easily than before IPF.  (Sometimes I wonder if just knowing I have it makes me tired!  It’s a great excuse for reading!)
I have tried several of these suggestions: a daily anti-reflux tablet (eating late does seems to make it worse), OTC cough syrup (Walmart’s Equate works as well as any), a nasal spray (before IPF, I wasn’t aware of pose-nasal drip, but it seems part of the territory).  One of the best cough relievers for me is actually not a drug, but ‘Fisherman’s Friend‘ lozenges. I’ve tried the Original (my favourite) and Honey Lemon (sugar-free).
Some days/nights, I cough a lot:  others rarely.  It is quite erratic but very tiring when it occurs.  The high humidity we’ve experienced this summer doesn’t help.
My doctor has given me a prescription for Gabapentin, which I have not started yet.

Thanks for all your help on this forum.  I particularly appreciate the commitment of Charlene, here in Ontario, and Mark, in the US, to respond to us all and keep us informed.  (I’ve been ‘a secret follower’ for almost 2 years, but rarely post.)

Kate

[Kate Smithson]

Dear Steve, Charlene and Mark:

It is Kate Smithson here, and I am a registered member of PF News. I sent that message to Steve as I am searching for travel insurance information.   I had a question  for him and didn’t feel comfortable communicating on the public forum, so sent the “friend” request.
I trust that you can reassure him that I’m a legitimate member.  Perhaps because I sent that message (and this one) from my cell rather than my computer was a problem??Many thanks, Kate