September 26, 2018 at 7:41 pm #14657
No matter how hard we try to stay healthy, sometimes falling ill due to our chronic lung disease is out of our control. Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, I have made a commitment that I would be as proactive as possible in keeping myself healthy. I rarely ask or expect others to help me with this, but last night I was reminded that even despite our best efforts; we can become ill from a situation beyond our control.
I am writing this forum post from an ER hospital bed after being rushed here this evening unexpectedly. As I was entering the grocery store, oxygen in tow, I must have missed the gentleman smoking right in front of the entrance/exit doors. As I inhaled he exhaled a puff of cigarette smoke which led to a coughing spasm for me. This isn’t the first time this has happened, but I feel just as frustrated as if it were.
People are entitled to smoke, I understand this. However, in Canada, there are laws about designated smoking areas and I wish this man had followed the law. I realize he didn’t know that I was entering the store with a chronic lung condition, but it also means he might not be aware of others with invisible lung conditions (ie. children with asthma, seniors with COPD); potentially jeopardizing their health as well. Unfortunately, I paid the price of his intentional decision not to follow the law and now I’m left pondering:
What is my responsibility or obligation to ensuring this doesn’t happen in future? No one really did anything wrong in this scenario, with the exception of the gentleman and he didn’t intend on having anything happen to me. However, I’d like to avoid this happening in the future.
How would you deal with this situation?
How do you cope with falling ill at the hands of others who might not take the precautions we need to stay healthy (ie. smoking in designated areas, or covering their cough)?
September 27, 2018 at 11:27 am #14671Patricia HaydenParticipant
So sorry you ended up in the ER last night. We can only do so much for ourselves let alone what others do. Because I am an ex-smoker ( still think about it) I can usually smell tobacco first. Never thought of that as a gift.
When I saw the title of your blog, I related to my best efforts I have made and being set back by this disease in it self. I am having to crank my air up more. Last month I was at 2 and 3 and now it is 4 and 5. Wish someone would invent a cordless device to up the O2 when needed.
Also after finishing Pulmonary rehab (3 months of sessions), I got bronchitis which set me back totally and all the strength I had mastered was gone after a month of this.
I am starting over in trying to get my strength back for transplant. It is so hard. The bronchitis took me down a notch in the disease. I remember at a lecture in rehab, the Doctor said that the disease progress along a straight line and then with an incident, it drops down to a worse then before condition.
Thanks for sharing and giving me an outlet to voice my life and opinion. Healing hugs to you dear girl.
September 28, 2018 at 9:39 am #14682
Thanks so much for your reply and for your kind words – they really are uplifting to me on a tough day, so I am very grateful for the time you took to write me/us.
I am starting to realize that despite my best efforts, I can still fall ill as a result of others’ actions and that is quite upsetting. It is like a vulnerability you can’t control almost, which is frustrating. I’m glad you’re able to smell tobacco in advance, I think that is a gift (although can understand how you wouldn’t think so initially) to avoid a situation like I was just in. Thankfully I am recovering well, but did need high-flo oxygen to bring my saturations up.
Wouldn’t a cordless connection to our 02 be nice? What are you attributing your increase in oxygen needs to, just disease progression? Sorry to hear about the bronchitis too, that definitely would set you down a bit. Hope you’re on the mend now and can get your strength up for transplant. Easier said than done though, isn’t it? Hang in there and thanks again for your kind words. I’m very grateful for you!
September 28, 2018 at 8:04 am #14672William ShermanParticipant
Charlene, really sorry for your need of ER, let’s all hope you are better really fast. You’re our leader and not supposed to get sick. Hoping for the best and a speedy recovery. Keeping you in our thoughts and prayers.
I’m on my third day of Esbriet and no reaction at all Hopefully things will stay that way as I increase dosage. More on topic, I know what you mean about efforts to stay healthy; I’ve been hit with Thyroid problems and have been diagnosed as having Graves Disease. Plus I have a suspected cancer on my Thyroid. Having a biopsy sometime soon. So, so much for being proactive to prevent getting disease which might accelerate our IPF. But I must say the the medication they put me on for the Thyroid (Methimazole) has done wonders for my overall health. Almost forgot, also have afib. Despite it all,I’m feeling great!!!
September 28, 2018 at 9:48 am #14685
Nice to hear from you, thanks so much for your kind words regarding my unfortunate experience earlier this week! Thankfully, I am home now and a lot more comfortable but I did need additional oxygen support (beyond just my cannula) to recover my saturations. Now I have a pesky cough that I am hoping will go away as my lungs recover from this event. I am so appreciative of your thoughts and prayers though, thank you all 🙂
I am SO happy to hear that there haven’t been any unpleasant side effects since starting the Esbriet. I will keep my fingers crossed that this continues for you. Also prayers and positive thoughts for your upcoming biopsy! So glad you’re feeling well despite all of this Bill, that is so important. Thanks for writing to us!
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