Back in the old days we had Yahoo PID Group ( we did not realize these letters stood for an entirely different disease). My Space, IDF forum and now Facebook are great platforms to find other patients so you don’t think you are the only one in the world with this really odd disease. Many of my old friends from the Yahoo group are now my friends on FB.
I was on a 2 week business trip training a new sales rep about how to work with patients and docs for PI patients and our treatments. It was in the dead of winter in Minnesota – so I was happy to be heading to Phoenix. However, I had been sick and it had turned into bronchitis. At the time, I was unaware of the fact that you should not be flying with bronchitis. I had to learn the why the hard way. In addition to the flight to Phoenix – we also flew to Las Vegas and back, New Mexico and back to meet with docs. I was feeling increasingly worse – but put on my happy face. Since I was in the area for 2 weeks – I had convinced my boss to let me rent a condo so I could make healthy food and not have to eat all of my meals out. Which turned out to be a very inconvenient move.
That first week-end, I was really miserable. I had developed a very noisy and concerning lung crunch and crackle. I was feeling too lousy to even get to a grocery store so living on tea and toast. Saturday nite – I rolled over in bed and the crackle turned into a WHOOSH. I could feel the air leaving my lung. I was alone. My cell was charging in the kitchen. I was scared. What to do?
I had previously had a lung biopsy and the nurse told me when I was discharged that I should watch in case my lung collapsed. She gave me a tip that saved me. She taught me how to self inflate my lung. So I did. Afterward, I sat upright in bed and read afraid to sleep- afraid I might die.
Did I go to ER – no. But I did go to the Yahoo PID site to ask for advice.
“Hi gang, I’m out in Phoenix and I’ve had that virus from hell for over 2 weeks… I thought I was better- now my chest/lungs are rattling and last nite- my lungs were like squishing together when I rolled over on my side, and then they kept making squishing and then a loud whoosh (the sound of collapse I later learned) sound. Any ideas? Need advice please”
Everyone who read it told me to go to ER. But as usual, I was bullheaded and resistant.
Finally, Dr Jamie Weismann ( who I recognized from reading her great book) jumped on and told me that I most likely had collapsed lung, pneumonia, bronchitis, and pleurisy. She told me to get to ER. I FINALLY listened and she was right – I had all of those things she mentioned. I ended up even sicker and had to stay another 2 weeks as I was not allowed to fly home. I am thankful she pushed me into going.
My Immunologist at Mayo used to give her book to all of her newly diagnosed patients, but stopped when she learned that it upset some and made them cry and scared.
I thought the book was terrific and it helped me understand the different ways PI can attack us and how differently it affects each of us.
I recommend it and just an FYI – it’s under $5.00 at Barnes and Nobles on-line.
I must admit that when I was released from Mayo Scottsdale the following morning – I stopped to give a presentation to a group of Immunologists that had been previously scheduled and then went back to condo to SLEEP!
LESSONS TO BE LEARNED
1) Don’t fly if you’re sick – especially if you’re coughing and feel lung involvement
2) LISTEN TO and TAKE ADVICE
3) Keep your phone by your bed – charged
4) Fighting it won’t make it go away
5) Learn emergency self care techniques ( like how to inflate your lung)
6) REST, SLEEP
What would you have done in my case?
Have you ever worked against yourself like I did?
Are you good at taking advice?
Let me hear from you