Saturday, October 10, 2009

Everything You Always Wanted to Know About H1N1

There's been a lot of talk in the "CF Circles" lately about Swine Flu and the H1N1 vaccine. I thought I would post this very informative article concerning the flu and the newest vaccine from the New York Times. I would also like to hear from you guys. What do you think? Are you going to go for the new H1N1 vaccine or are you going to hold off? What are your doctors saying about it?

As Flu Vaccine Arrives for the Season, Some Questions and Answers

Published: October 9, 2009

The first doses of vaccine for the H1N1 2009 influenza, commonly called swine flu, began arriving at hospitals and doctors’ offices this week. But fear and confusion about the vaccine are spreading almost as quickly as the virus itself.

The earliest vaccine shipments came in the form of a nasal spray, which is now a priority for health care workers and children. The number of children who have died of the new virus climbed rapidly to 76 this week, already nearing the 88 child deaths for the entire 2007-8 flu season. A flu shot form of the vaccine is expected next week.

Web sites and talk shows are abuzz with worries that the government rushed the vaccine. The comedian Bill Maherrecently told his 60,000 Twitter followers that people who took flu shots were “idiots.” Consumer Reports recently released a poll showing that only 35 percent of parents surveyed would definitely have their children vaccinated. Undecided parents said they worried that the vaccine was new and untested.

So what are the facts? Here are answers to some commonly asked questions about the new flu virus, regular seasonal flu and the two flu vaccines intended to prevent them both. Join the discussion at


What’s the difference between the seasonal flu that occurs every winter and this new H1N1 flu virus?


Seasonal flu comes back in slightly different forms each year. But the H1N1 2009 is an entirely new combination of four genetic elements: a bird flu, some human flu genes and two types of swine flu. The H1N1 2009 virus, which has spread worldwide, was surprisingly robust during the spring and summer months. Right now, about 90 percent of the circulating flu is H1N1, although seasonal flu, which typically peaks in winter, has also been detected.


What is the difference between the two flu vaccines?


The H1N1 2009 vaccine contains only the novel H1N1 virus. This year’s seasonal vaccine contains three influenza viruses — one A (H3N2) virus, one regular seasonal A (H1N1) virus unrelated to the swine flu strain and one B virus.


I’ve heard that the new flu strain circulating this fall is mild. Why should I have my child vaccinated?


When it became clear last spring that the pandemic H1N1 strain would not be as deadly as once feared, health officials reassured a nervous public that most H1N1 infections had been “relatively mild.” It created the false perception that H1N1 is not a life-threatening illness. While most people who get H1N1 are sick for three or four days and then recover, a recent New England Journal of Medicine study showed that among Americans hospitalized with swine flu last spring, one in four ended up in intensive care and 7 percent of them died. In the Southern Hemisphere, 14 percent of flu patients in intensive care died.

Since Aug. 30, at least 936 Americans have died of flu symptoms or flu-associatedpneumonia, and it appears H1N1 2009 flu will be at least as deadly as seasonal flu, which kills about 36,000 people annually.


How is this flu season different from every other flu season?


The new flu strain is preying on children and young adults and appears to have a disproportionately high fatality rate in pregnant women. Older people, typically most vulnerable to flu, appear to have some immunity. Since April, 76 children have died of H1N1, including 19 last week, according to the federal Centers for Disease Control and Prevention. During the first four months of the outbreak, 100 pregnant women were hospitalized with the virus, and 28 died. The C.D.C. reports that 37 states now have widespread influenza activity, highly unusual this early in the season. Hospitalization rates for influenza also are higher than expected for this time of year.


Since the vaccine for H1N1 is new, how do I know it is safe?


Every year, the seasonal flu vaccine is tailored to match the viruses circulating at the time, and the H1N1 vaccine was made exactly the same way.


Was the H1N1 vaccine subjected to the same testing and clinical trials as seasonal flu vaccine?


The F.D.A. does not require a new round of human clinical trials to study minor changes in the flu vaccine each year. However, clinical trials were conducted on the H1N1 2009 vaccine to determine the adequate dose. In addition, because H1N1 is a pandemic, we now have more information from other countries. Of the first 39,000 Chinese to get shots, only four had side effects, including muscle cramps and headaches. “You could argue that this is better tested than seasonal flu vaccine,” said Dr. Paul A. Offit, chief of infectious diseasesfor Children’s Hospital of Philadelphia.


Were manufacturing shortcuts taken to rush this vaccine to market?


Secretary of Health and Human Services Kathleen Sebelius has lauded the government’s quick response to the pandemic threat and the fast turnaround of the new vaccine. That has created perceptions that the vaccine was rushed. The reality is that in 2005, worries of a bird flu epidemic prompted the Bush administration to increase flu vaccine production capacity. It typically takes five to six months to make flu vaccine, and that is about how long it took to produce the H1N1 2009 vaccine. The H1N1 virus itself grows more efficiently than some past flu strains. “We have cut no corners,” Dr. Thomas R. Frieden, the C.D.C. director, said at a news conference. “This flu vaccine is made as flu vaccine is made each year, by the same companies, in the same production facilities with the same procedures, with the same safety safeguards.”


How is flu vaccine made?


The C.D.C. identifies and tests a viral strain, then distributes a version of it to vaccine manufacturers, who inject it into millions of eggs, where it multiplies. Then the virus is harvested, purified and developed into a vaccine.


What is the difference between the nasal spray and the flu shot?


The injectable vaccine or flu shot is made from a killed influenza virus that is highly purified and broken into tiny pieces. It cannot recombine in the body to produce flu, but it can still stimulate the immune system to evoke a protective response.

The nasal vaccine, called FluMist, is made of an attenuated live virus. This is a weakened version of the virus that has been tamed in the laboratory so it cannot cause illness. (Themeasles and chicken pox vaccines also are made from a live attenuated virus.) The attenuated virus can multiply only in the cooler temperatures of the nasal passages, and cannot survive in the higher temperatures of the respiratory tract, said Dr. William Schaffner, chairman of the department of preventive medicine at Vanderbilt UniversitySchool of Medicine. When the vaccine is sprayed into the nose, it multiplies on the mucous membranes in the nose and throat, triggering the body’s immune response without causing any illness. Some studies suggest the nasal mist is more effective than the traditional flu shot.

FluMist is not approved for people with asthma, pregnant women or people with underlying medical problems like heart disease and diabetes.


How long after vaccination does the body develop immunity to the H1N1 2009 virus?


In general, immunity to H1N1 2009 kicks in about seven to eight days after the vaccine, slightly faster than the 10 to 14 days typical of seasonal flu vaccine. However, a child below the age of 10 will need two doses of the H1N1 vaccine, spaced about a month apart, and full immunity will not occur until about a week after the final dose. “Kids get two doses because they don’t develop as high of a protective antibody response from the first dose,”

said Dr. Gregory A. Poland, an infectious disease specialist at the Mayo Clinic in Rochester, Minn.


Can seasonal flu vaccine and H1N1 2009 vaccine be taken at the same time?


It depends on the formulation. A patient can receive two flu shots or a combination of nasal spray and flu shot. But patients who want both vaccines in nasal spray form must wait at least two weeks between vaccinations so the attenuated viruses do not compete against each other.


If I’ve already had the flu this year, do I need either flu shot?


Unless your case was officially confirmed by a laboratory test as H1N1 2009, there is no way to be sure you are protected. If you did have confirmed H1N1, you are still vulnerable to seasonal flu.


Can you get vaccinated against flu if you have a fever or a cold?


The flu vaccine is typically not recommended for patients with any signs of illness, so that symptoms are not wrongly misdiagnosed as side effects of a flu shot.


Can people who are allergic to eggs get the flu vaccine?


The vaccine typically is not given to people with egg allergy. People at high risk for flu complications may be able to work with an allergist to be desensitized so they tolerate the vaccine.


Why are pregnant women at higher risk of complications from H1N1 flu?


A woman’s immune system is compromised during pregnancy. Late in the pregnancy, the fetus pushes up against the thoracic cage and decreases a woman’s lung capacity, putting her at risk for respiratory complications if she contracts flu. A New England Journal study found that pregnant women with swine flu were nine times more likely to be in intensive care.


Is flu vaccination an option for people with suppressed immune systems?


A flu vaccine works by stimulating the body’s immune system to produce antibodiesagainst the virus. A person with a suppressed immune system cannot generate an immune response and does not benefit from vaccination. This includes many cancer patients undergoing chemotherapy, asthma patients who require large doses of steroids and those taking immune-suppressing drugs after an organ transplant. Patients who are immune-compromised should talk to their doctor about whether they should get a flu shot.


Do adjuvants added to flu vaccine increase risk of an autoimmune reaction?


This is a myth perpetuated on some health Web sites. Although substances called adjuvants are sometimes added to vaccines to make them more effective, no flu vaccine sold in the United States, including the H1N1 2009 vaccine, contains any adjuvants.


Does the new vaccine contain the mercury compound thimerosal?


Flu vaccine packaged in a multidose vial contains thimerosal, a preservative that prevents contamination of the vial during repeated use. One dose from a multiuse vial contains about 25 micrograms of mercury. By comparison, a tuna fish sandwich contains about 28 micrograms of mercury. Repeated studies have shown thimerosal to be safe. However, people who want to minimize mercury exposure can ask for a vaccine in a single-dose package, which has only trace amounts. Thimerosal is not used in the production of FluMist.


What about the severe complications associated with the 1976 swine flu vaccine?


A 1976 swine flu vaccine was associated with Guillain-Barré syndrome (pronounced ghee-YAN bah-RAY), in which the body damages its own nerve cells, causing weakness and sometimes paralysis. The data on flu vaccine and Guillain-Barré syndrome are not conclusive. One study suggested the 1976 vaccine posed a 1 in 100,000 risk. Another study found flu vaccine in general carries a 1 in one million risk for Guillain-Barré syndrome. By comparison, 1 in 8,300 Americans dies of flu each year.


If I think I have H1N1 2009, should I see a doctor?


Most people will recover without needing a doctor. High-risk patients should see a doctor at the onset of flu symptoms and may be treated with the antiviral drug Tamiflu.

I'd love to hear your thoughts on this subject. Will you get the vaccine? Why or why not? It's time to sound-off people!!!!

Friday, October 9, 2009

The First Time I Was Told To Quit Running...

...while I was actually running. So this past week marked a couple of firsts in my life when it comes to running. I ran 3 miles. I ran one mile in under 10 minutes (first time since high school). And I was told to stop running by a, in my opinion, overly concerned yet sweet old lady. Let me set up the story before we get into the dialogue. Mandi has been pushing, sorry, encouraging me to try and run 3 miles for quite some time now. Granted, maybe it's only been a couple of weeks, but trust me, it feels longer (kidding, Mandi honey darling). I finally decided to cave in when Mandi told me that she would be going for a long run herself and that she was stepping up her training for the 1/2 marathon she's running in next month. She informed me that she was going to do 7 miles and then maybe push it further "depending on how she feels". Well, being the competitor that I am, I couldn't take that laying down. Not that Mandi and I compete against each other (not saying that we don't either), but we definitely push each other everyday to be better than we were the day before. So anyway, Mandi took off on her run and unbeknownst to her I decided to try the 3 mile loop.

I'm running along, feeling good and thinking to myself, "man, I'm going to kill it today". My breathing was doing really well, my legs felt good, my music was jammin', I didn't have a care in the world. After almost 1.25 miles I was thinking I might be able to push it to 4 miles! Just then, the uphill came and brought my little fantasy back down to earth. It was great while it lasted though. I was about half way through my uphill climb when I saw a car make a u-turn about 100 yards in front of me. That same car then pulls up along side of me and rolls down the window. The following conversation* took place...AS I WAS RUNNING!

*Names have been changed to protect the innocent


Sweet Lil' Old Lady: Excuse me...

Me: [Taking head phone out] Yes?

Sweet Lil' Old Lady: [With a "I'm lost" look on her face] You don't look so good.

Me: [Confused because I thought I would be giving directions] What???

Sweet Lil' Old Lady: You don't look very good, I mean, you're REALLY red.

Me: Oh, that's ok.

Sweet Lil' Old Lady: No seriously, you look bad [she says in a matter of fact kind of a way].

Me: Oh no, it's ok [still running, wondering how long this tug-o-words was going to go on].

Sweet Lil' Old Lady: You know I can take you wherever you are going. Why don't you just get in the car?

Me: [With a "Did this lady just ask me to get in her car WITHOUT offering candy?" face] This is how I get when I go for my runs...

Sweet Lil' Old Lady: Well you look really flush, I think you should walk.

Me: That's ok, it's just how I get.

Sweet Lil' Old Lady: Well, ok, but I really think you should think about walking, you're really flush!

Me: [Now feeling more short of breath because of the in-depth conversation I'm having with this sweet old lady who is obviously just concerned for my welfare, but has no idea that I'm going for a personal distance record] Ok. Well I appreciate it.

Sweet Lil' Old Lady: Ok [nervous giggle]. Good luck!

Me: Thanks! [Head phone back in]


Needless to say, it was quite an interesting experience. I'm very grateful that she was so concerned for one of her fellow citizens, but I just wish we could of had our debate at another time. My pace slowed down quite a bit after talking with her as I was trying to regain my breath and ease into a consistent breathing pattern. I did end up making it the whole 3 miles though and in the big picture, that's all that really matters. Plus, if that wouldn't of happened, I don't know what in the world I'd be writing about today!

So am I the only one? Have you ever been asked to stop running? Working out? Coughing? Jumping? Prancing? Dancing? Dipping? Dodging? Diving? Come on, give me something, please tell me that I'm not the only one!!!???

Thursday, October 8, 2009

CF Cyster Inspiration!!!

- I'm so thankful for my bloggy cyster Sara! She introduced me to the running plan that I recently completed and is also a huge inspiration for me. We're talking about a girl who ran in and completed a half-marathon within a handful of months of getting her transplant. You want to talk about "no excuses"? This girl is it. We've also been able to hang out socially (of course obeying the vaunted CF six foot rule) with her and her husband Mike and have had a great time together. Thank you Sara for all of the positive influence that you have brought into my life within the short time I have known you.

-I'm so thankful for my new running shoes. I've been able to give them some time to break in and so far, so good. My feet have not hurt AT ALL which is truly unbelievable to me. To go from the pain I was having to literally no pain has been such a huge blessing. It's allowed me to stay on track with my running schedule and has no doubt benefited my lungs. It's actually kind of funny how my shoes came about actually; I'll keep this short, I promise. I went in with Mandi last month or so to get her shoes. While in the store she convinced me to at least let them look at my feet and put me in a shoe (I hate spending money). She then convinced me to buy a shoe with the help of the salesman. I said "ok", but absolutely no Nike shoes (only because I've had a couple runners who I respect tell me to avoid Nike running shoes). I, of course, ended up with a pair of Nike running shoes which I love.
- I'm thankful that my step dad Mark is going to be able to fly back and see his dad for which may be the final time. My grandpa Andrew has lived what many would consider to be a great 90 years plus and has done much of it with a smile on his face. I'm thankful for all of my fond memories of him. Racing him at the age of twelve when he was in his 70's (and he won). Getting in a snowball fight with him in front of his house (he probably won that too). Sitting next to him and my grandma on the front porch of our house when they were out to visit from Iowa. Thanks for all of the great memories grandpa!

Wednesday, October 7, 2009

Spread the CF Wealth (of Awareness)

First, I'd like to start with a little bit of blog updates and thingamajigs....

1. I would ask that you take a look at the new comment section under the post today, try it out and tell me what you think. I'm trying to spice things up a bit on this blog and I figure I would start with the comments section. Supposedly this platform allows you to connect with your profiles on other social networks (Facebook, Twitter, etc) and gives options not available on the standard blogspot comment section. If it stinks, it stinks; if it's good, it's good. So, please use it, comment and tell me what's up.

2. You'll notice that below each post are little icons of almost every social network on the planet. If you are familiar with them, I ask that you use them to promote anything Cystic Fibrosis. Whether the content is another Website, blog, article or here on RSR, I really think those of us in the CF community need to take advantage of the ability to "spread the word". The more people that are aware of what Cystic Fibrosis is the better and it increases the chance of getting support for our mission- a cure. If you are unaware of what exactly those icons mean, just click one and investigate a little- I promise it won't bite.
3. I just wanted to give all of you a sincere THANK YOU for reading this blog and your continued support. I promise that we are closer than ever to whipping this CF thing in the butt...I'm not even sure if that was used in the right context, but I know you guys are with me!

Without further ado, my post for Workout Wednesday...

Running has been going better than I could have ever expected. Now, EVERY run is at least 30 minutes long. In fact, my last run was 2.9 miles long which crushes my previous long distance of 2.25 miles. It took me just under 45 minutes (so if you're doing the math at home, I'm still incredibly slow) but I never ever stopped moving forward, and for me, that's what counts. About half way through the run my legs literally went numb and probably helped me push all the way through the finish line. For me, getting past the leg pain is half the battle, so when they go numb, I figure I'm ahead of the game. My numb legs and feet also "allowed" me to trip on a slightly raised sidewalk (don't you hate that?) and almost fall flat on my face, but that's another story for another time. Speaking of another story for another time, here's my teaser for my Friday Firsts post: For the first time ever, I was actually asked to stop running (in the middle of my run) by a complete stranger because I looked so "flush" as she put it. Stay tuned!

On a sad personal note: I was informed today that my grandpa in Iowa has been given about 3 weeks to live due to very aggressive and late-stage pancreatic cancer. I ask you to keep the family in your thoughts and prayers and that he will not experience much pain. Love you grandpa.

Tuesday, October 6, 2009

Human Paperweight

I just had to post this....
OCTOBER 6--Meet Jackie Knott. The Alabama woman, 37, is facing a child endangerment rap for allegedly having her teenage daughter ride in a cardboard box atop her minivan as it traveled along an interstate highway Saturday morning. Knott, pictured in the below Albertville Police Department mug shot, told cops that her 13-year-old daughter Haley was serving as a human paperweight to keep the box from falling off the vehicle (and careening down U.S. 431). While Knott explained that the box was too large to fit inside her van, it is unclear why she did not seek to simply flatten it in an effort to squeeze the box into her crowded vehicle. When stopped by cops, Knott, a Boaz, Alabama resident, noted that "the box was tied to the van with a clothes hanger," according to a police press release. That assurance did not sway cops, who arrested Knott in the shadow of a Tyson Foods poultry processing facility, according to an October 3 police report. (3 pages)

You can find a ton of stories like this and other funny stuff at The Smoking Gun.

Monday, October 5, 2009

Attack of the Bubbly Guts: The Importance of Digestive Enzymes

Saturday night Ronnie and I babysat for his cousin's kids. I simply adore his cousin's kids, but that's another story for another time. The important part of this story is that while we were babysitting, after we put the kids to bed, Ronnie grabbed a slice of pizza. Seeing the pizza in his hand I yelled from the couch, "do you need your enzymes?" in my most loving, nagging voice. "Naa, it's ok," he replied. Wellll it turned out to NOT be ok. For the next several hours, he was rubbing his bloated, turning, rumbling belly.

He had sharp pains in his sides, was extremely gassy (yes, not taking pills can negatively impact EVERYONE around you) and appeared to be several months pregnant. He (and the toilet) continued to pay for his pizza sans pills after arriving back home last night and this morning. Needless to say, it was a good reminder of why we tote around enzymes with us everywhere we go.

We've started to get strategic with our enzyme placement so that we can avoid incidents like Saturday night's pizza bloat. We keep them everywhere. We have a bottle in my car and 1-2 bottles in his. We have a few bottles at my house and a small arsenal at his. But he has a new favorite location: a change purse that is kept in my 'mom bag' (a purse so large that you can fit anything and everything in but can never locate something once its in there). We've found the change purse method to be the most handy because I rarely go anywhere without my purse.

Before keeping them in my purse, we'd often have to run back to the car or realize after it was too late that the car stash was out. We just always make sure that the change purse is full and we're good to go. Also, it's nice when they're in a change purse because you can avoid pulling out a huge bottle of pills while at a restaurant or with company (if you're shy about your pills). I'm not sure what Ronnie likes better about this solution, the fact that he is more likely to have pills when he needs them, or that it's become my responsibility to always be fully loaded. Regardless, it has worked for us.

Just thought I'd share our enzyme strategy. I've found that working out simple little systems like this makes it all a lot easier. Also, in that change purse, I always carry a few tylenol so that if he gets achy or a headache out of no where, we have them on hand.

How do you remember your enzymes and where do you stash them? We're always looking for new tricks!

Sunday, October 4, 2009

Check it out, hot off the press!!!!

Disease becomes a motivator

Tucsonan helping others while facing loss of insurance
By Stephanie Innes
Tucson, Arizona | Published: 10.04.2009
Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.
The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Singer Gavin DeGraw's "Free" plays on his iPod. Sharpe hates to run; he absolutely loathes it. But he forces himself to do it at least three times a week.
Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There's no cure, and Sharpe already has lost several friends to the disease.
He's garnered national attention recently, having won a contest sponsored by a vitamin company. The contest, titled "Fuel Your Greatness," asked entrants for inspiring stories. He wrote about his running.
A 50-day hospital stay earlier this year inspired the running fixation and a blog titled "RunSickBoyRun," which now gets an average 300 unique viewers per day from all around the world.
And a local executive whose child has cystic fibrosis is helping fund Sharpe's latest project, a soon-to-launch Web site that he hopes will be international in scope. CysticLife is designed to be a hub for his "cystas" and "fibros," and their friends, loved ones and the public.
But not everything is going well for Sharpe — he's set to lose his health insurance.
His mother, Christine Hiemstra, works in accounting for the University of Arizona's Campus Agricultural Center, and all his life Sharpe has been on her health policy. He's been allowed to stay on the insurance into adulthood because state coverage has always been extended to employees' dependent adult disabled offspring over the age of 23.
But a bill signed into law by Gov. Jan Brewer last month eliminates coverage for Sharpe and 360 other disabled adult offspring of state employees. Also cut from coverage are domestic partners of state employees and employees' offspring ages 23 and 24 who are full-time students. Altogether, about 2,200 people will be affected, Arizona Department of Administration data show.
Though the law took effect Thursday, those slated to lose their insurance are not expected to be cut from their plans until Nov. 24 at the earliest, state officials say. The legislation is still under legal review.
"I have faith," Hiemstra said. "I just don't believe the state will look at all these disabled adults and kick them to the curb."
Sharpe shares his mother's positive attitude. He credits it with keeping him healthy in the face of an illness that is the most common fatal genetically transmitted disease among North America's white population.
"I kind of signed a lease with God on my life. At some point, I'm going to have to return it to him. But I'm going to go way over on the miles," Sharpe said. "We do have more control over our CF than we hold ourselves accountable for. My lung function has gone up 10 percent since I started my running blog."
When Sharpe was born in 1980, the life expectancy for a cystic fibrosis baby was 20.
Dr. Mark Brown, a professor of clinical pediatrics at the University of Arizona who has been treating cystic fibrosis patients since 1983, said the UA's Cystic Fibrosis Center has a patient who is 69.
While he stressed that's rare, Brown also noted that survival rates have been steadily increasing due to better treatments and improved drugs.
The development of artificial enzymes that help those with cystic fibrosis to digest their food was a huge breakthrough during the 1960s. Before that, many children died of malnutrition, Brown said.
Sharpe takes nine pills containing artificial enzymes before each meal.
Because of digestive troubles, most people with cystic fibrosis are thin. And many, including Sharpe, have raspy voices from coughing and from some of their inhaled medications.
Sharpe is not thin. He stands nearly 5 feet 9 inches and weighs 185 pounds. Growing up, he played football, soccer, basketball and baseball.
His lung function isn't as strong as it was when he was in high school, and he now spends more time in the hospital than in the past. His average now is 90 days per year. He never gave up athletics, but after his illness earlier this year he decided to make a firmer commitment to fitness.
Each morning, he walks and coughs to remove what he calls the "junky stuff" from his lungs.
"If I eat too late or shower too early, I'll throw everything up," he said last week during a walk through his parents' midtown neighborhood with his dog, Jezzabel, and his girlfriend, Mandi Melin, 22. "My food digests really slow. Throughout the night I'll be coughing and swallowing mucus without even knowing."
He follows the walk with a shower, where he coughs more.
"The shower sounds like a war zone," Melin said.
After his shower, he begins the first of his four daily treatments. Each lasts 45 to 75 minutes. He puts on a vest with built-in equipment and that sounds like a washing machine and pounds his chest to help shake mucus from his lungs. He also uses a nebulizer, which delivers medications directly to the lungs. Before Sharpe got the vest, Hiemstra had to pound her son by hand — twice a day for 20 years.
During and between treatments, Sharpe is on his computer. He sends out short messages by Twitter, writes blog entries and works on the launch of CysticLife. Its funding came from local executive Court Gettel, whose son, Walker, has the disease. Gettel and Sharpe met at a fundraising gala last year.
"Ronnie has a lot of passion for life," Gettel said.
Melin said Sharpe is often on the phone with parents of newly diagnosed children, and also with teenagers who often want to speak with someone other than their friends or parents. Sharpe is a frequent presence at Cystic Fibrosis Foundation events in both Tucson and in Phoenix, where Melin lives.
RunSickBoyRun has sparked emotional debate by posters on issues such as whether people with the disease should be working full-time jobs, and what parents should do about having more children if they are both carriers of the cystic fibrosis gene, which means there's a 25 percent chance their baby will be born with the disease.
Melin graduated from Syracuse University in December and now works full time for CysticLife. She also helps with the RunSickBoyRun blog and is a constant by Sharpe's side.
"Mandi is my rock," Sharpe wrote in a recent blog. "I had my mom to lean on for so many years (and still do) that I knew that I would need a strong and confident woman in my life in order to make a relationship work long term. . . . Mandi does the perfect job of kicking me in the butt, but then bringing me ice."
The risks of exercising with cystic fibrosis include low oxygen levels and ruptured blood vessels in the lungs, which is extremely dangerous. That's why while Sharpe runs, Melin runs alongside, constantly checking phlegm he spits out for spots of blood.
Melin also sets Sharpe's running goals. He'd like to run one of the cystic fibrosis organized walks, which are 5 kilometers. But his runs are often difficult. Last week, he said his phlegm felt like Super Glue, and he couldn't speak for several minutes after he was finished.
Brown, the UMC doctor, said exercise is good not only for clearing out the mucus but also because the big breaths required for exercise help keep the lungs open. And exercise, among other things, releases hormones that promote the development of muscle tissue, so the benefits outweigh the risks, Brown said.
While Sharpe and his mother have faith that the insurance problem will sort itself out, Melin is more concerned. One of his recent hospital stays ran up a bill of nearly $400,000. He's had numerous surgeries, and his medications alone are thousands of dollars per month.
Sharpe has applied for the state's form of Medicaid, the Arizona Health Care Cost Containment System, in the past. Though he doesn't have an income, he has too much money in the bank to qualify, he said.
Melin said the solution may be marrying Sharpe and finding a job with good enough benefits to cover them both.
For now, Sharpe and Melin remain hopeful that a legal review of the new legislation will rule in Sharpe's favor. In the meantime, Sharpe is focusing on increasing awareness of a disease he believes will be cured one day.
And he continues to run.
"When you are feeling sick, that's when you want to push harder," he said. "For most chronic illnesses, a lot of it is your mentality. If you sit on a couch all day and do nothing but feeling sorry for yourself, you are going to die."
Contact Star reporter Stephanie Innes at 573-4134 or