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.

The First Time I Died -Part 2

To see part one of this story, please click here.

Continued from last Friday....

I woke up to the doctor giving me a “noogie” on my sternum. It really hurt. I grabbed her arm and asked her, “What are you doing?” She then went on to telling me to breathe deep and “stay with her”. At this time I saw another doctor lead my mom out of the room. Just then they attempted to sit me up again. When they tried to sit me up for the second time, my eyes rolled into the back of my head and I stopped breathing. It’s not strange to me that it happened again, but what I saw and experienced, in the short time between losing and regaining consciousness will always be a very distinct and thrilling memory.

What happened next could be real or it could be fantasy, but there is no doubt in my mind what took place.

I saw everything that was happening. I saw a room full of doctors. I saw me, lying on a bed in the middle of chaos. I was overlooking the room and was probably five or six feet above everyone else. It was if I was looking through a video camera and filming what was going on. Then I saw what has burned into my mind ever since. I saw, at more of a ground level angle, a man from the medical team consoling my mom and telling her that everything was going to be all right. I saw my mom react in a way that I had never seen. She looked panicked. She wasn’t calm. Worse yet, she was crying. I had never seen her, until this point, ever worried about my life. She may have been at times before, but she never let me see it. I always remained calm and collected because she was always calm and collected. When I saw her like this, I was extremely saddened. The feeling of seeing my mom so distraught really hurt me. It was then that I woke up.

This time I woke up to the doctor “fish hooking” my mouth. Apparently there is a nerve back there, that when pressured, causes pain. Well not apparently, I can tell you, it does. It hurt worse than the sternum noogie. When I came to, they were hovering over me with paddles. I guess they were expecting my heart to give out. That was kind of scary looking. I’m just glad they didn’t have to give me “the shock of my life”. The doctor was again yelling at me to stay with her. She was asking me if I heard her and how was I feeling. I actually grabbed her arm to get her attention (and to get her hand out of my mouth). Before answering any of her questions, I had one simple request. I said, “Please go and tell my mom that I’m going to be ok”.

That was my only concern. I wanted my mom to stop hurting. She had dedicated her life to help me avoid pain. Now I felt I was responsible for afflicting pain on her. The doctor sent somebody to go and speak with my mom and I felt a sense of relief. I later spoke to my mom about the whole episode and what I saw, her story corroborated. Can it be all a coincidence? Sure. I look at it as something totally different though. For me, it was a kick in the butt. I didn’t look at it as a wake up call to take better care of myself (although I definitely focused more on hydration as a result), but I knew that I never wanted to make my mom feel like that again. I never wanted to put her in a position to where she had to fear whether I was going to live or die.

There have been other times that doctors said “that was a close call” as well. I have had nurses come up to ICU because they weren’t sure if I was going to make it. My lips have been blue from a lack of oxygen. I’ve coughed up so much blood that fellow campers thought there was a grizzly animal attack the night before. Events like this only do one thing for me. They make me realize how blessed I am to be living and to take full advantage of life. I actually feel fortunate that this kind of stuff happens. It makes me focus even more on my health and gives me motivation to stay healthy. I didn’t have a whole lot of time to dwell on what happened that Friday night however. We still had nine games left on the schedule and I had practice on Monday.

Next week I will be posting a blog written by my mom on what she saw, heard and felt during this traumatic event. So ya'll come back you hear!

The First Time I Died -Part 1

I was a high school senior. It was the first football game of the year. I was fortunate to be my team’s starting tailback. After a pretty good half (65 yards rushing and two sacks as a DE), my muscles started cramping up. I always had problems with cramping while playing sports. Staying hydrated was always a major focus of mine. There were two times before this incident when the cramps got the best of me. Once, the summer after 8^th grade, I was rushed to the hospital by ambulance because of severe muscle cramps and the inability to hold down any liquid (I was outside working on a house renovation in the heat of summer without any water. I know. How brilliant of me.) And also when I was visiting my father over one summer in San Antonio, I started severely cramping after a game of flag football. I was rushed by ambulance again to the hospital and luckily my dad (a military hospital administrator) was able to get his friend (a doctor) to meet me at the hospital doors and begin treating me right away. After blood and urine tests (in which my urine looked like Root Beer) the doctor said that he felt I was just minutes away from some of my organs shutting down. Both times was quite a shock to the system and even more of a shock to my parents.

Well, back to my senior year. This episode of cramps was like nothing I had ever felt before. We’re talking here about muscles cramping in areas that I had no idea contained muscles. They started during the game, but I was able to stretch them out. By the time half time hit, they were all over my body. There I was on the sideline, lying on the ground with trainers surrounding me trying to stretch what seemed like every part of my body. We soon realized that they were not going to stop. So now the question was, do we call an ambulance or do we just go to the ER? We decided to just go to the ER. Bad decision. My uncle carried me to the awaiting minivan and off we went. The whole time to the hospital he was rubbing and stretching all of my leg muscles. To try and describe the pain would do the pain an injustice. All I can say is, picture a “Charlie horse”. Now picture a bunch of Charlie horses all over your body. When I (or my uncle) would try to get rid of a cramp in my quad, it would move to my hamstring. Work on my cramping bicep and it would move to by tricep. I’m telling you, every muscle in my body was cramping in differing strengths for different lengths of time. There was a time during this episode that my eyelids cramped open. I couldn’t close my eyes. Never knew that could happen.

We arrived to the ER and my uncle ran in and got a gurney and a staff member. This is when we realized it was a mistake to not call an ambulance. In a move I can still not explain, they determined that I was not an emergency. There I was sitting, or more accurately laying, in the emergency room with every muscle in my body cramping. My mom and my uncle were diligently rubbing the various parts of my body that were affected as I was writhing in pain. We told everybody working there the situation. I had Cystic Fibrosis and this had happened twice before but not as bad. I pleaded with them to please just get me started on IV fluids. At one point, I banged on the glass partition and said, “You really don’t get it, I need help right now!” I felt helpless. Over the years I have learned to gage when I’m really in trouble and when it was something I could work through. I knew I was in trouble. I needed to be seen and I needed to be seen right away. Nothing seemed to get their attention.

That all changed when I started to hyperventilate and get tunnel vision. I had always heard about tunnel vision but I had never experienced it. I remember trying to catch my breath and just not being able to. I was looking at the ceiling and a dark circle seemed to be closing in around me. It got to the point that I could only see probably a foot or two of the ceiling. It was if I was looking through a scope. With this new development, they rushed me to the back.

When I got into the room, I was pretty much out of it. I don’t remember much in between the tunnel vision and actually getting back into the room. When I got back to the room, I do remember feeling a sense of relief. Finally I was going to get “better”. Boy was I wrong. It only got worse. They had started an IV on me and there were more and more people coming into my room. I remember looking to my mom and she was such a calming force. I thought to myself that something must be going on because there are now a lot of people around. I could not catch my breath and I started to panic. The last thing I remember was taking a ton of short and shallow breaths one after the other and a doctor saying, “Ron, you need to calm down and try to take deep breaths”. When she said this, the medical staff was in the process of sitting me up. That’s when it happened. I had respiratory arrest. My eyes rolled into the back of my head, I stopped breathing.

To be continued....

Part 2 coming next Friday

Miss the first "First Friday"? Click here to check it out.