September is Pulmonary Fibrosis awareness Month and although it’s not September when I’m actually writing this post, it is where I am in documenting my journey thus far so your stuck learning about it today. I’ll give some basic facts about pulmonary fibrosis, talk about the things I miss most, share some of my posts from that month from my online support groups and then challenge you to “breath like me”.
Pulmonary – lung; fibrosis – scar tissue : so simplest definition is scarring of the lung. More than 250,000 Americans are living with PF and more than 50,000 cases are diagnosed annually. There are five categories of identifiable causes; enviromental, auto-immune, occupation, drug-induced and radiation induced. If a patient’s PF cannot be categorized it is placed in the sixth category-idiopathic.
THERE IS NO KNOWN CURE but there are treatment options. Those include Oxygen therapy, pulmonary rehabilitation, medications, in some cases lung transplantation and in others, palliative care and/or hospice. It is a progressive disease, which means it worsens over time. As it progresses, everyday activities such as showering, getting dressed, speaking on the phone and even eating can make patient breathless. Showering and getting dressed already does that for me. Eating can if I do it too fast or eat too much.
Common symptoms are shortness of breath, cough and fatigue. Scar tissue makes your lungs stiff. Stiff lungs are hard to stretch, so your breathing muscles have to work extra hard just to pull air in with each breath. Your brain senses this extra work, and lets you know there’s a problem by triggering a feeling of breathlessness or shortness of breath. The shortness of breath in turn can trigger a cough. Studies estimate that people with PF can cough anywhere from 200-500 times per day. Now imagine all that coughing and all that extra muscle work just to breath – now you understand the fatigue.
I think the things I miss the most are things most people take for granted, being able to laugh without going in to what feels like a life threatening coughing fit, being able to sing/dance to my favorite songs while cooking/cleaning, being able to sing in my car on the way to work without sounding like I’m falling off a cliff or simply going for a stroll on a beautiful day without a care in the world, not thinking about where I’m going, how far I’m going, can I make it?, is it flat? how hot/humid is it? is it too cold? and for heaven’s sake NOT having to carrying around that oxygen. It’s a real love/hate relationship I have with it at this point.
Throughout the month of September I weaned off of prednisone and then got my first cold/upper respiratory infection since being diagnosed. I had posted in one of my support groups that my diagnosis is ALL I can think about and it was the truth! Even though I felt about the same as I did prior to knowing what I had, maybe even a little better with the medications, I was totally consumed by it. I wrote “I struggled with some of my daily activities but I feel like knowing what I have and the prognosis has actually crippled me in a sense”. I went on to post when I got the upper respiratory infection that “being sick with this chronic illness is a whole different experience…kinda scary. Oxygen sats are still ok but I get to coughing so hard I get short of breath. And sometimes I cough up huge amounts of mucous all over myself, it’s disgusting! I’ve been doing pretty good, I just came off of prednisone after four months, I hope this doesn’t set me back”. A simple cold, and I was afraid! I was concerned that it was going to set me back and all of my upcoming tests in October were going to be affected.
Now, my challenge to you. During Pulmonary Fibrosis awareness month the Canadian PFF came up with the Pucker Up Challenge.
- grab a drinking straw
- pucker up
- breath
But don’t stop there. Now grab your laundry basket and try to do your laundry while breathing through that straw. Or grab your mop and try to do your floors. Or simple go for your daily walk. Lucky for you, you can take the straw out when it gets hard. The only thing I get is a 10 pound oxygen concentrator to strap to my back to carry around. The breathing doesn’t get any easier. And please, don’t get me wrong, I’m not looking for pity, maybe just understanding and a small amount of empathy of what life is like for me EVERY DAY! ALL DAY!
Let me know what you felt, I would love to hear your experience
Comments
2 responses to “Pulm fibrosis month”
Ok, that sucks big. Carol, you already know I have a little scarring in my lungs, too. Nothing like you though. I tried the “straw breathing” and I cannot imagine living that 24/7/365. You should tell people no cheating though, no breathing through your nose, just the straw. Your anger, your self-pity, your grief, all your emotions are real and justified and should be experienced and expressed so you can get where you’re going. And yes, always wear the damn dress.
Personnally I haven’t tried it so I don’t know if it really feels the same but I would imagine since it does restrict the air you’re able to get that it’s at least similar.