Exacerbations

[gil]

1. I had to leave a religious  service because of the insence, it took  more than two  weeks to recover, though I think the damage is still there, my cough is worse since then . Please consider adding insence to your list.

 

 

 

[Charlene Marshall]

Hi Gil,

Thanks for sharing, although I wish this wasn’t the experience for you. How long ago did this happen? I’m sad for you to hear that you think the damage is still there. I typically don’t burn candles in my home anymore simply because I worry about the open flame and my oxygen, but more so, I’m not sure if the smell and the small amount of smoke that is emitted off a candle would bother my lungs. I will add inscents to my list for sure, thank you for sharing this experience.

Another person shared with me that the flu was responsible for her most recent exacerbation and subsequent respiratory decline. I am terrified of getting the flu, so I will keep these in mind for things that could trigger an exacerbation. Have you ever had this happen? It’s really scary and actually took some work with the PTSD specialist for me to ‘forget’ about it happening. It has increased my anxiety for sure around it potentially happening again…

Charlene

[gil]

Charlene ,

Yes  the flu is a problem, leaves me drained for two or more weeks.  Sometimes I am not sure whether I have the flu or I am experiencing ipf symptoms, I suspect the latter is more likely.

[Charlene Marshall]

Hi Gil,

*Knock on wood* I have not had a bad bout of influenza since my diagnosis of IPF. I am hoping to keep it that way for a really long time, as I can’t imagine experiencing some of the flu symptoms on top of the regular symptoms of our disease. Has your Doctor ever given you specific symptoms that would require an automatic Emergency Room visit? For me, if I have a fever over a certain degree, that is an automatic ER visit and likely admission, depending on the cause. Other things include persistently low 02 sats on my home monitor or coughing up blood. I’m curious to hear if others have been told from their Doctor about symptoms that would require an automatic hospital visit for them?

[gil]

Charlene,

The pulmonary doctors said if shortness of breath gets worse, to immediately call and make an appointment; if severe breathing issues to go to my local emergency hospital.  The IPF medical team is about a two hour drive from my home.

[Charlene Marshall]

Hi Gil,

Thanks for sharing. It is interesting that ‘severe breathing issues’ is what your Doctor advised you to go to the local ER, as I would suspect this to be true for anyone even if they don’t have a respiratory disease. How long would it take you to get an appointment if you did experience worsening shortness of breath? Unfortunately appointments here can be 3+ months out with specialists, as our healthcare differs significantly from the US. This can unfortunately mean that if you need to be seen quickly, an ER trip it is ….

[Deleted User]

Hi all!

Just to start – I can’t get to the link above.

I had “flairs”, I guess  you could call them acute exacerbations.  Symptoms included an large unwieldy elephant on my chest, lower O2, and pain in my back/chest/throat on inhaling and exhaling but OK if I held my breath.  It started out like a really bad case of heart burn and got really worse from there.

In my case I suffer from interstitial lung disease syndrome which unlike IPF can be treated in many cases with prednisone and immunosuppressive therapy.

When I started immunosuppressive therapy, Cellcept in my case, the doctors wanted to bring my prednisone down as far as possible.  Once I hit 8mg daily I started having flairs.  The flairs were quickly addressed by my doctors and I was treated with a boost of steroids which quickly resolved my issues.  Once I went to 10mg daily of prednisone I’ve been fine.

 

 

[Charlene Marshall]

Hi Alex,

Thanks for sharing your experience with exacerbations.

I have tried to re-post the link here: https://www.atsjournals.org/doi/pdf/10.1164/rccm.200703-463PP 

It is a PDF article, so if it doesn’t work, let me know and I can try to paste it as an image.

Alex, did anything in particular precipitate these ‘flairs’ for you (or was it purely the reduction in Prednisone)? I’d be curious what types of factors might have triggered them, such as environmental factors. Following these, did you have any decline in your overall lung function? If you did, were you able to get it back through rehabilitation programs or medications, or has it remained a decrease? One of my friends suddenly went into rejection about 2.5 years ago after her transplant and she was doing very well, and her lungs declined 25% overnight, which is terrifying as she wasn’t able to get her lung function back. Thanks for sharing the symptoms of what this was like for you too, I think this will be helpful for many forum members to know and understand, especially if they ever experience something similar.

I am also on Prednisone, and am going to do a forum post shortly about managing the symptoms of this as sometimes I can be so grumpy and I really don’t mean it 🙁 Was the Cellcept hard to adjust to? I know this is a medication that most post-transplant patients are on to help with rejection issues, but I didn’t know people were put on it for other uses. I know this is something I’ll end up having to go on as well so curious what your experience with it was like.

Thanks again for sharing!

Charlene