Health Care We Can Afford? Not Likely.

Note from Ronnie: I'd like to present as many different views as I can over the coming months about this debate on Health Care Reform. If you would like to chime in on this topic, please contact me and we may be able to use your commentary on this blog. Comments and questions are encouraged, I just ask that you keep them constructive and respectful. Thanks.

First things first: What an honor to be a guest blogger on RunSickboyRun! Ronnie, thanks for asking me to participate. As much as I hate confrontation, I’m thrilled to be writing about something so important and is sure to change all our lives in one way or another.

Just a short into: My name is Erica. My son, Samuel, is almost two and has cystic fibrosis. Samuel was diagnosed at just 14 days old through mandatory newborn screening in our state. My husband and I had no idea we were carriers of the mutated gene as there was no history of cystic fibrosis on either side of our family.

Let’s be honest: cystic fibrosis is an expensive disease. Medications are abundant, treatments are frequent and highly specialized. There are continual doctor visits, numerous hospital stays and, quite possibly, transplant surgery, to name just a few. When the need for care arises in an emergency, a person with cystic fibrosis requires highly specialized care in a timely fashion.

I saw a sign the other day on the podium at which President Obama was speaking. It read "Health care our working families can afford". This proposed legislation is something that my working family canNOT afford. There is no way this plan can or will give the required quality of care to Samuel. Let me explain why.

Right now, we are blessed to have health insurance through my husband's employer. Even before Samuel was born, we knew we had access to healthcare for the good health and wellness of our family. We are fortunate to have this for our family, however, our health plan still requires us to pay a portion, so it's not free. We happily pay our portion because we are grateful for the quality care Samuel receives. We know he is being seen by the very best physicians, receiving the best care we can get for him. We have chosen to sacrifice some things so we can provide this high level of care. For some to say they become bankrupt because of health care or lack of insurance is simply untrue. The real issue is lack of proper financial planning to prepare for health issues.

I always hear how good Samuel looks. People constantly tell me “He looks so healthy!” I always say thanks and fill them in on the details: we have great caregivers. Samuel’s pediatrician, pulmonologist, nurse, nutritionist, respiratory therapist, along with the many others on the team, coordinate efforts to make sure he is receiving appropriate, integrated care. When something is wrong, I know I can count on this team at our local cystic fibrosis care center to answer my questions the same day I call. We get the best care because it is what we expect from them, along with our insurance company. The Cystic Fibrosis Foundation funds and accredits over 115 care centers across the nation and sets the standard of care at the accredited facilities.

I know the current heath insurance system is flawed. It's not perfect and I don't know of anyone who will say it is. However, let me point out what it has done for me. Our insurance company has negotiated, on behalf of Samuel, the purchase of his high frequency chest compression vest, affectionately known in our house as “the vest”. We would have never been able to afford this on our own, as many families just like our in Ireland have experienced. We also received, the same day it was ordered, his nebulizer, delivered to our home so we could begin treatments that very day. You see, with cystic fibrosis, proactive treatment and nutrition really is the best care.

Because of the cystic fibrosis center working with our insurance agency, Samuel was diagnosed very early in his life. A sweat test performed at 14 days old, confirmed what newborn screening initially picked up. Once we got the diagnosis, we were able to tackle this disease head on with proactive treatments and nutrition. Without our insurance company working on our behalf to get early tests and proactive care, we could have easily missed this vital window of opportunity. We are also permitted to participate in clinical trials to improve treatments for people with cystic fibrosis, not only adding years to life, but life to years.

The people of the U.S. have access to the best medical care in the world. It’s no wonder people from around the globe come here for specific medical attention. Heart care, cancer treatments and other highly specialized surgical procedures are sought after here in the United States. With a system so flawed the government feels the need to take over, how can this be? And, furthermore, how can we, as citizens of the United States, expect the best medical care for the lesser among us, when the federal government takes over. History, economic principals tell us decisions will inevitably be made based on dollars, not days, on protocol, certainly not passion.

Advancements made in the treatment of cystic fibrosis have come a long way in the past 50 years. Clinical trials, of which my son is about to begin participating in, are common for people with cystic fibrosis as new treatments and drugs are consistently being developed and pushed through the pipeline. Unfortunately, those on Medicaid cannot participate in these trials. I can only imagine, should this proposal pass, this would be the expectation. Without constant progress, who then, would lead in drug and treatment development? What nation would take our place as leaders in high quality medical care?

Socialized medicine, almost certainly, would lower a cystic fibrosis patient's already too short life expectancy of 37 years. At the very best, it would stay the same. I want to be able to look at my son in 5 years and honestly say, "Samuel, when you were born, the life expectancy of someone with your condition was 10 years less than it is now. We've come a long way!"

If you're looking for health care the working family can afford, this isn't it. This is the plan we can't at all afford.

To view Erica's blog, please click here or go to thekelleys119.blogspot.com. Remember, keep all comments constructive and respectful. This is a chance at some open dialogue between people who will be directly impacted by new policies formed in the Health Care arena.

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!

Clinical Trials, The Mine and My Competitive Spirit

Here's what I'm thankful for this Thursday:

- I'm so thankful for the availability of clinical trials for those of us with Cystic Fibrosis. I actually just started my first one in a long time and so far so good. Granted, I'm on a med (TOBI) that I've been doing for about 10 years now, but it's a head-to-head trial versus AZLI (Aztreonam). I had a 50/50 shot of being given either drug and I was chosen to do TOBI. Mandi asked if I was disappointed that I didn't get the wonder drug AZLI (it's been shown to increase lung function by 10-12% in a month) but my response was a simple one, "I just hope that someone with lower lung function is given the opportunity to take that drug".

- I'm so thankful for The Mine. The Mine is a bible study that takes place every Tuesday night at my church (it's almost like a church service as there is 500 people that attend) that really digs into the bible. We go verse by verse and really dissect each passage. Last night (Tuesday) was all about how important it is to have fellowship with other Christians who encourage each other to walk with God daily and strive for a life modeled by Jesus while He was here on Earth. I've been blessed to be surrounded by a great group of friends that do just that!

- I'm thankful for my competitive spirit. Although this quality has gotten me in trouble once or twice (ie church league softball and dodge ball), I'm so thankful that it is still in me today. Being in constant competition with myself is often the drive that keeps me going everyday as I am always trying to be better than I was the day before. It's what got me through my run yesterday even with a belly full of Dunkin Donuts coffee and lungs that felt they were swimming with mucus. I just refuse to lose...even to yesterday's version of Ronnie.

"Don't ever strive be better than someone else, just always strive to be better than you." ~Ronnie

Why Push Through the Tough Times?

Today, I wanted to talk about when to push through the tough times and the importance of making up missed workouts. I know better than anybody the ease at which we can make up excuses and continue to push-off exercise to the point that we just forget about it completely. It's vital to our health and our lives to stay ahead of Cystic Fibrosis and continue to "outwork" it everyday of our lives.

To see my new running routine click here.

To see my before pictures click here and here.

To see my way before and after pics, click here.

Asher's First Vest Treatment

I wanted to share this video of little fibro Asher doing his very first vest treatment. I've hung out with his parents Jeremy and Rachel and I'm very impressed with their great attitude and commitment to making sure Asher is the healthiest kid around. You can check out their blog at www.asherolimb.com plus follow them on Twitter at @RachelOlimb, @AsherOlimb, and @AbelDanger. Enjoy, this is a VERY cute video!

The Vest is here from zeropointD on Vimeo.

Proud and Looking to Brag

This Mandi Monday is actually all about Ronnie, but Ronnie Monday just doesn't sound as good. I write today to brag on Ronnie's behalf. I am SUPER proud of Ronnie's running this week, so I'll tell you a little bit about it, from my point of view.

I must say, I've seen Ronnie push himself out of his comfort zone quite a bit. Ronnie, if you haven't learned already, is very willing and eager to give anything a go at least once and gives everything his all. When we work out, he works up a pretty good sweat, gets pretty winded, often dry heaves or even throws up. I've seen him work out in the hospital, with his PICC line dangling, and seen him climb the Great Wall with a terrible cold, high fever, gasping for breath. But even after seeing him push himself through many other things, I have never been as proud as I was this last week.

This week we upped our cardio to running 4 minutes, walking 3 (x4). Tuesday was our first day for this time/distance. Ronnie seemed a little apprehensive about the shift from walking more than running, to running more than walking. But never-the-less, he eagerly laced up his now beat-up looking Brooks, and was ready to go. I tried to reassure him that he was fully capable of running 4 minutes and we were off.

About 1/4 of the way into it I could tell he wasn't feeling great. When we finished up the first running segment, his breath got a little strained. He put his hands on his hips. You could tell he had a little stitch in his side. He coughed a few times until it sounded like he was going to toss his cookies, but held it down. He was hurting. He stayed focused. He glanced at his watch (he pays attention to our time), gasped for a few last breaths, coughed once, and started running again. Each time our 4 minutes of running were up, he'd be more winded, coughing a littler harder and would take a little longer to catch his breath. But each time, he'd glance at his watch and when it was time, he'd start running again. I was impressed.

And when I thought I couldn't be more impressed, he amazed me. The last segment of the run, he ran longer than he had to, by almost a minute. Not only did he push himself to do what hurt, but he had pushed himself to do more than he had to. That I find truly admirable.

Here's the greatest part: he may not feel it this week or next year, but one day it will pay off that he has always done a little more than he had to. He will undoubtedly be able to run faster, run farther, and ultimately live longer because he always went "the extra mile" (terrible pun intended)--for that, I am proud!!

(I thought I'd throw in a video of Ronnie and me at the Great Wall for your enjoyment!)