Regular medical respiratory specialist appointments.

[Charlene Marshall]

Hi Mary,

Thank you for joining the PF forums and for sharing this post with us. I can certainly imagine your frustration with knowing that your treatment options for your PF have remained the same since 2015. Can I ask if your lung function tests have changed within the timeframe of November 2015 to your most recent visit with the respiratory specialist? Might it be possible that the treatment regimen hasn’t changed for you because it is stabilizing your disease, as opposed to it progressing? Just a question that I am curious about in particular. It is often difficult to stop (or even slow) the disease progression of PF, so if this has happened for you with the treatment option you’re on (Symbicort) then perhaps that is why there has not been a change? I was also on Symbicort for a long time, although I just recently had to change to Zenhale due to not being able to inhale hard enough for the Symbicort turbuhaler due to my declining lung function.

Just curious too, would it be worth it to obtain a second opinion? I know this is easier said than done, but we have to advocate for our needs and if you’re wondering why your treatment hasn’t changed, and you suspect it should have, it might be worth following up with another specialist to ask their opinion? Just a couple of thoughts but I’d love to hear more from you.

Please connect any time!

Warmly,
Charlene

[Mary Echberg]

Hi Charlene – thankyou for your response. My most recent lung function tests were in February, however, I was quite sick for about 3 weeks in January and only now in March I think I’m on top of it. The physician only commented on one positive result which was my perfusion had improved. I know my LFT overall was not asgood as previous results because I had been quite unwell (really gave me an eye opener as to what to inspect in the future). I’ll be more forthcoming at my next appointment in June. I find the forum conversations valuable and helpful but also quite upsetting – a little bit of a reality check. Thank you again Mary.

[Charlene Marshall]

Hi Mary,

Thank you for getting back to me and for providing some clarifications to my questions.

Based on being sick in January throughout March, do you suspect maybe your lung function tests in February were maybe not as accurate as they might have been if you weren’t ill? Just something that crossed my mind, as I know breathing for me is so much harder when I am unwell, and I can’t imagine my pulmonary function tests (PFTs) would be accurate if I had a cold. It seems as though you might be aware of this possibility as well, might it be worth requesting a re-do test?

Has there been any talk of starting you on either of the two anti-fibrotic medications for IPF (Esbriet or OFEV)? Perhaps your doctor is monitoring you and will mention it when you get to the point of needing this medication, just another question that popped into my mind.

I do agree with you, some of the topics on the forums can be overwhelming as you read about other people’s experience with this disease, their PF progression, etc, while at the same time it can be really helpful and comforting to me. I am someone who likes to know what to expect, so I try to reframe my involvement with the forums as that: reading about other people’s experiences, even if they are tough, so I know what to expect. Please feel free to talk about that in some of the forums too, as I am sure other patients can resonate with you about how the forum can be both helpful and scary. We’re hear for you, if there is anything in particular we can help with.

Warm Regards,
Charlene