Wednesday, September 25, 2013

The First Time Cystic Fibrosis Was Real to Me

**I recently stumbled upon this post written by Mandi way back in 2009. Gives some of you new readers a good glimpse into the beginning of our relationship and how awesome Mandi is for sticking around!!**

Ronnie's carefree attitude always makes Cystic Fibrosis feel so easy; so manageable. Sure he has his good days and bad days, but for the most part CF doesn't play much of a role in any given day. However, I have come to learn that the CF Ronnie portrays and the CF Ronnie has are two very different things.

After dating for about 6 months, Ronnie and I went to China together to visit my parents. In China, he experienced the perfect storm of a chest cold, polluted air, cigarette smoke galore, hemoptysis, and one long flight back to the US, but I didn't realized just how bad off he really was. I knew he didn't feel well on our flight home. In fact, I spent the entire 12 hour flight watching him as he fell in and out of sleep and consciousness. I'd watch his chest for movement and nudge him if it looked like he was "gasping" for air more than he normally does when he's asleep (anyone else breath like that? It almost sounds like a slow, drawn out bull frog croak). Still I wasn't nervous. He'd give me a reassuring smile here and there, crack a joke or two, and let me know he'd be fine.

We got him back into the country and into the emergency room. We sat there for hours. Ronnie's sats were low enough that the nurses seemed quite alarmed, so they put Ronnie on oxygen, and kept upping the number of liters, from 2 to 4 to 8. Ronnie didn't look like he felt the greatest, but still he gave me a reassuring smile, cracked a joke or two, and continued to tell me he was fine. Around 3 am, he told me to go get some sleep. "I'm just waiting for a room," he said. "Go sleep and I'll be all set in the morning when you get up." So I did.

When I got to the hospital the next morning around 7, I found him in ICU. He was sound asleep, hooked to all sorts of machines making all sorts of noises. The most alarming of all, however, was the bipap. I later found out that they were unable to keep his sats up with oxygen alone, so they had him on the bipap to attempt to get more oxygen into his body. I sat there just watching him. There was no smile for reassurance that I could see through the bipap mask, no jokes, no words of encouragement, or words at all. It was the first time I'd seen him truly sick. The first time he just didn't feel well enough to bring light to the situation. It was the first time I saw that CF could change the game within a split second. It made me realize how much I don't know about CF. It made me understand that it's a very, very serious illness.

That being said, it also made me realize how much of a fighter Ronnie is. Uncomfortable, in pain, uncertain: He just kept on. And as each day passed, he just kept fighting and kept improving. It wasn't long before his reassuring smile was back, his jokes started flowing, and his encouraging words soothed my worried mind. So I guess the best part about the first time CF was real to me, was that I realized no matter how much CF can do, Ronnie will always do more.

4 people had something to say...:

Deb said...

okay, first, is it monday or has mandi now taken over fridays, too?! yeah mandi!

second, you both are such an inspiration. that might sound so strange, but i get so much comfort from your words (both of you).

third, i can SO relate to this post... and i don't know if it would be different if people truly understood the disease, but my son is SO much like ronnie (a younger version) and ALWAYS has his game face on. i adore and admire the fighting spirit and know it gives him a true advantage in his fight against cf, but it also makes people blind to what is really going on in his body.

anyway, i am rambling.

Laura said...

Mandi, I completely understand where you are coming from in this post. My boyfriend has CF. We had only been dating about a month when he went into the hospital for the first time during our relationship. It was so scary. I think for the first year or so(we've been together for a little over 1 1/2 years) I couldn't even begin to comprehend how CF affected EVERY SINGLE part of his life. I still can't even begin to imagine what he goes through and what life is like for him, but somehow he makes it work. Even though I want him to tell me about how he is feeling and about his CF in general, I think he knows that there are certain things that will just worry me. He knows when to tell me everything and when to just go with it and not let it get him (or me) down

Kat said...

Mandi, you are simply incredibly. And then I read a post written by Ronnie and I think the same thing. You two are so made for each other it makes me smile each time I think of good'ol Rondi! :)

Denise said...

God, are so strong. It's great that you and Ronnie found each other. You both are incredible.