No Major Setbacks

Hospital Stay: Day 21

He said – Well, I sure hope I'm coming down towards the end of this stay. After a setback last week, it feels like I've been getting incrementally better, although I wish it was faster and more consistent. Feels like my health is changing by the hour some days. Fortunately, I haven't had any major setbacks this stay so I will certainly count my blessings.

For now, I'll continue to take it easy; Stuff my face with food; Drink about 120 ounces of water a day; and try not to go insane. The end is near.

She said – This stay is flying by. Our days are so jam-packed that they all just flow one into the next. These days have looked a lot like the past days. Every day has been filled with the gym, swim lessons, a playdate or two, and some errands and some naps. There was school Friday and today. This weekend we went down to see Ronnie Saturday after my long run and the gym. We stayed over night, so Mckenna got to have another sleepover with Ronnie, which is her absolute favorite. We also really lucked out because there was an event at the hospital for all the kiddos…so there were booths with people doing hair, makeup and face paint. They had characters in costume, games, pizza and cupcakes. Keni was in heaven! We stayed until mid-morning on Sunday, and then headed back to Phoenix where we went straight to my parents’ house with my brother, sister-in-law, and niece, and we all just hung by the pool.

Today was more of the usual. The only new tidbit was that I volunteered at Keni’s school, which she always loves, and always leaves me thankful I just have one preschooler at home and not 12! Ha!

We are holding tight to hear how Ronnie’s PFTs look tomorrow. I know he is itching to get out. We miss him a lot, so we’ve love for him to get home SOON. That said, we are doing well, so we don’t want him to get out any earlier than he needs!

Single-momming It

Hospital Stay - Day 16

He said – At this time last week, I was thinking there was a pretty good chance of me going home today. Uhhh, nope. Unfortunately, I started to feel new lung pain on Monday and had increased crackles, mucus and coughing. It was slightly better on Tuesday, but still not improved enough not to have an effect on my PFT numbers. I came in at 36, last week 63, this week 56. It's not all in the numbers, but I generally don't like to see them going down while in the Hole. I'll be okay though and we'll come up with a plan. Look forward to being back on the right track soon!

She said – We posted an update on Sunday. It’s Wednesday night. What happened to Monday and Tuesday? Talk about a blur. I’ll fill you in…this, that and the other thing happened…The end ;-)

Kidding.

We have filled our days with swim lessons, the gym, play dates, school, and fun dinners. Mckenna has continued to be a doll. Bennett, despite cutting his top two teeth, has been super flexible with all of our running around and napping on the go, and has been sleeping like a champ at night.

I was really hopeful that Ronnie may get home today. I even thought maybe he was punking me when he said he wasn’t getting home until the end of the week. But punked I am not. It is looking like he will be in awhile longer. But that’s ok. This stay has flown by and another few days to a week, we can do it!

I will share an intimate, slightly morbid, yet slightly empowering thought I had Monday night. I felt a little like supermom as the day was great, I had gotten the kids to bed, and finished picking up the house (clearly my supermom bar is really low). I made my dinner and sat down at the table to eat it. As I sat there in the post-bedtime silence, alone at the table, feeling totally content, I thought to myself, “I think would be ok if something happened to Ronnie. I can do the single mom thing.” Yeah. I warned you. Slightly morbid. I promised Ronnie before we got married that I wouldn’t marry him unless I was totally ok with all of the possibilities of CF, including the possibility of being a young widow or single mom. And I married him feeling like I believed wholeheartedly I was totally ok with it all. Then we had kids, and I thought, “eeeesh…single-momming it is rough!” And it is rough at times…but sitting at the table, eating my dinner feeling confident and fully content, alone, kids in their beds, I felt like I may actually be able to do it! Welp, there you go…an intimate look into my crazy, crazy head! Sorry! Now, let’s hope it’s not going to happen, ever. Our days and lives aren’t as fun without Ronnie around every day. But if God has a plan that goes a different route…I realized for the first time that we could actually do it!

Battleship

Hospital Stay: Day 13

He said - Had another great weekend with the fam. The cherry on top was Keni having a hospital sleepover. She is always very excited about the opportunity when I'm in here, but when it comes down to it, she sometimes backs out and doesn't actually stay over. She's very concerned about doctors coming in all through the night. Well last night she was not deterred and we had a great time hanging out together. She slept like a stud and we both had a relaxing morning together. I even had the opportunity to teach her how to play Battleship before Mandi and Bugs brought us breakfast :)

She said - This weekend has been a goodie. We left off on Friday I think, so I’ll go with the abridged version of the last 3 days so this doesn’t trail on for hours. Friday was filled with swim lessons, a field trip with Keni’s class to the butterfly wonderland (a butterfly exhibit place), naps, and gym. Saturday morning I had the holy grail of babysitters willing to come at 4:45AM, so I could get my long run in before it started getting hot. After my run, I quickly stopped by the gym, and then hurried home to get myself and the kids ready and packed for Tucson. We headed down to Tucson to see Ronnie. 

Ronnie’s mom took the kiddos for an adventure to McDonald’s and a pet store to give Ronnie and I some time sans kiddos. Then we all just hung out, ate dinner, and then Bennett and I headed back to his mom’s house so Ronnie and Mckenna could have a slumber party. Sunday we woke up and Bennett, Ronnie’s mom and I brought Ronnie and Keni breakfast. Then it was just hospital hanging out, followed by an adventure for lunch outside of the hospital (shhh don’t tell), and then we headed back to Phoenix. Once home, we settled back in, played a little, walked for froyo and did our bedtime routine. All in all it was an awesome weekend. Mckenna has definitely struggled this stay when it comes to saying goodbye to Ronnie. There are lots of sobs and devastation. It’s pretty heartbreaking, but once a little time goes by, she gets it together and she’s back to her happy self. She sure loves her daddy! 

The end is in sight…and we are all ready for it!

Blueberry Scones. Yum.

Hospital Stay: Day 10

He said – Today was a pretty lazy day. I did get outside to catch some rays and get the heart rate going a bit, but other than that, I was purty lazy. I'm improving daily and feel like I'm probably 50% of the way there or so. As soon as I feel like I'm in a position to succeed outside of these walls, I'm outta here!

They started baking cookies and scones in the cafeteria and putting them out at 9pm. Currently eating a blueberry scone. Gaining weight will be no issue :) 

She said – Today was one of those days when you completely overestimate how much you can fit into a day, but it was a fun day and it went quickly. We took Bennett to swim, came home just in time for our sitter to show up…who I had so I could get a run in and work. She hung with the kids, and then I got home, just in time to take a quick shower, and throw the kids into the car to meet another CF wife and her kiddos at Chick-fil-a to chat and let the kids play. We then popped by my parents’ house because we were up in their neck of the woods. We headed straight to the gym from there so I could get in my back workout and then rushed home to meet our friends at our house to do a pizza dinner in the park. They left right at bedtime, so the kids quickly took baths and I threw them into bed! I did my post bedtime tidy, ate my dinner, and relaxed in bed! It was a good day!

A Big Jump

Hospital Stay: Day 9

He said – Today was a great day. I got to hang out with the fam the last couple of days, and they are certainly the burst of energy that I need while I'm in here...and in a strange way, also an energy drain :) Mandi and I even got to have a date night that consisted of a cafeteria turkey melt and some onion rings. But, and this is a big but, they brought back late night freshly baked cookies to the cafeteria, so we were able to take full advantage. I definitely paid for that decision the next morning.

On the health front, I'm improving. In fact, I made quite a big jump in a week with regards to my FEV1. I came in at a 36% and yesterday I blew a 63%. Now, I didn't feel as bad as a 36 when I came in, but I don't feel as good as a 63 now, so ultimately, the numbers are just numbers.

I'm hoping that in the next week I can start feeling more and more normal and be in a position to kick some booty outside of these walls.

She said – The last couple of days have been fun. We went down to see Ronnie on Tuesday and spent the night at his mom’s house, and then saw him again this morning. Monday night we slept at my parents’ house so Tuesday morning I could get my training run in while the kids were with my parents. Then we headed back towards our house. On the way, we went to Bennett’s swim lesson and the gym and then onto home where we packed up and headed for Tucson. I had a thing for work in Tucson Tuesday night, so we got down there in the mid-afternoon so we could hang out for a bit before I went to my work obligation and the kids went with Ronnie’s mom to Chuck E Cheese. I got back home in time to put the kids down, and then headed back to the hospital for a short little date with Ronnie. Today we brought Ronnie breakfast, hung in the room, played soccer outside, and then headed for home. Once home, we relaxed a bit and then headed to the gym where I met a friend for leg day. It’s always nice to have a buddy at the gym so it feels less awful! Ha! We got home in time for dinner and bedtime routine. One thing I do every night that I haven’t documented here yet is after the kids go down, I do 15-20 minutes of a house tidy. Literally no part of me wants to, but I know that if I don’t, things will get away from me, and then I’ll feel miserable. So I wash all the dishes, pick up, take out the trash, you know, the very basic things you have to do to make your house not look like a war zone. It always feels so good when it’s done, and when I wake up the next day, I’m happy to wake up to a clean house…it feels like a fresh start.

I am so thankful for our time down in Tucson. It sure is nice to see Ronnie’s face in the flesh, even if it’s just for a short amount of time!

Sunny Day

Hospital Stay: Day 6

He said - I finally got outside today and sat in the sun. It was nice, but you would have thought I ran a marathon when I got back. I still have a little ways to go in here ;)

Other than that, today was a lazy day culminating with a meatball sub made by my brother and mom - yummy. My cousin also brought up a peach/lemon Eeggee (slushy type of thing) and it was pretty glorious. I only get Eeggee's when I'm in the hospital, so it's always a nice little treat to look forward to. 

She said - Today was another pretty good day. Bennett is cutting his top two teeth, so he was up a lot last night. That meant I was a little sleepy today, which meant my fuse was a little shorter. But overall, Mckenna had a good day and Bennett was happy and took a great 3 hour nap…probably making up for his lack of sleep last night. I had a sitter come this morning, so I could get my long run in with my running buddy. We even stopped our run at the coffee shop next to our house to grab an iced coffee before walking home. It was so nice to have a morning of adult conversation. The intention was to go to church after that, but Bennett slept through church, and well, momma wasn’t waking that sleeping baby! But his long nap gave Mckenna and I some nice one-on-one play time that I think she really needed. After Bennett woke up, Keni went down for her nap, so I got one-on-one time with him too. Post naps, we ran a couple errands, and then went to hang out with our friends for a little bit before dinner and bedtime routine. 

Another good day in the books. Here’s to hoping Bennett sleeps tonight!!!

I'm Just a Phone Call Away

Hospital Stay: Day 5 

He said –Today was a great day with my family. I wasn't feeling all that great, but I did my best to be present and active while they were here.

I've been battling nausea a lot this stay and it really seems to be taking it out of me. But, the lung pain is improving and I think I'm close to being able to take a deep, full breath. When I'm able to do that, I'm sure things will improve much quicker.

It was tough to see them go, but having them around is a good reminder for why I'm here.

She said – Today we got to see Ronnie! We planned on going down to see him tomorrow, but this morning Mckenna was missing Ronnie something fierce. There were tears. She insisted she couldn’t wait one more sleep until she saw him. I tried selling the idea that we were going to do something fun today and that it would make the day go fast. She asked me if I could go do that really fun thing by myself while she went to see daddy. It was then I knew that little girl just needed her daddy. So off we went to Tucson.

We had a nice visit. Poor Ronnie seemed like he wasn't 100% up for visitors, but he rallied for the sake of his Daddy’s Girl! We had lunch, went to the library, and played at the gift shop.

When we left it was brutal. Mckenna was the most upset I’ve seen her about leaving Ronnie. If she made eye contact with him she would just lose it. But we all got through the goodbye, and she slept off her sorrows on the drive home.

We got home just in time for dinner and bedtime routine. I put Bennett down and surprised Mckenna with a “girl’s night”…we watched a show and ate popcorn in my bed. It was a nice way to end the day!

As expected...

Hospital Day #2

He said – I'm not a big napper, but today I was sleepy. I even managed to take a snooze for about an hour. I'm still looking for the truck that ran me over, but I am seeing little signs of improvement.

Little brother made my dinner tonight - chicken breast with BBQ sauce, asparagus and sweet potato fries. And yes ladies, he's single :)

She said – Day numero dos was another success. Keni is seriously nailing it the last couple days. She’s been an awesome listener, tabled the sass, and has been a joy to be around. Bennett has been a little needy, but he only got up to eat once last night again, so I give him a gold star. I even managed to get their naps to overlap by 45 minutes so I could sneak in a little more work and a little kid-free time! #Winning.

Today was packed full again. We got up and had breakfast; went to Bennett’s swim lesson; and then went to the gym. We then scurried home because I had a babysitter coming so I could get a run in (I’m training for another marathon, and I don’t like running on the treadmill). The kids were with the sitter a few hours while I ran and then did a couple hours of work. I came home and surprised Mckenna with a trip to Chick-fil-a for lunch since she had been such a good girl the last couple days. We came home for naps for the kiddos and then left again for a playdate and dinner with friends. Then it was bedtime!

The day flew by and everyone made it through it with happy hearts! Success.

First Day In the Hole

You know when you have known someone for a really long time, except you don’t know their name. They told you it once, but you don’t remember it, and it’s been too long to ask them? Well it kind of feels like to write a blog after not writing one for so long. It’s a little awkward, but at some point, it’s necessary to bite the bullet and ask your name-less BFF their name.

I decided a great way to get back to blogging is to take it back to the basics. This blog started just to document my journey to get back lung function and run a mile, back in 2009 by writing what I did daily. So to get back into the groove, I’m bringing it back old school. I came into the hospital for a tune-up yesterday, so I am going to document my stay and what each day looks like. To add a little fun, we are going to make it a he said-she said format; I am going to write what I did during the day and Mandi is going to share her day…if we are feeling really crazy, maybe Mckenna will share her perspective some days here and there.

Hospital Stay: Day 1 

He said: Today was like most first days in the Hole…It felt like I had poison flowing through my body. I was tired, my eyes were heavy and I was achy all over. I also did PFTs and ended up having the worst numbers I’ve seen since 2009. I’m not shocked, but seeing an FEV1 of 36% was a bit jolting. You know what they say – Nowhere to go but up!

My lungs are certainly feeling much more junky than normal and I have a stabbing pain that is preventing me from taking a full breath. So, are my lungs really that sick right now? Probably not. But I have a lot of work to do and feeling like this is not acceptable, so I’ll do whatever it takes to dig out of this hole.

Looking forward to the challenge.

She said: Today is our first full day of Ronnie in the hole. It started out awesome because both kids slept well! Bennett was only up once in the night to eat, and Mckenna slept in my bed, so I didn’t hear from her except a little snuggle here and there.

We crammed the day full of activities to help the day go faster. First up was the typical morning routine of cartoons and breakfast, then Bennett had a swim lesson, I volunteered at Keni’s school (Bennett came too). After volunteering, Bennett and I came home, he took a nap while I worked, and then we went back to school to pick up Keni. It was then home for naps. While the kids napped I picked up the house and got a little more work in. Post-naps I met a friend at the gym for leg day. After the gym it was home for dinner, baths, and bed.

All in all it was a great day. How Mckenna behaves usually dictates how good the day feels to me…to be honest. Mckenna was a good little listener with a happy heart today, so the day felt pretty smooth. Unfortunately, we did have a couple little crying bouts by Mckenna because she missed Ronnie, but she recovered and was good otherwise. This stay seems like it bums her out more than stays in the past. The stays after Ronnie’s crazy stay where he was in for longer and I had to be with him for 3 weeks, seem to be harder on her. But she will get it one day!

He Said, She Said: The Day We Met

After being reminded by my wonderful mother-in-law about the first time they ever heard me mentioned, I thought I would write up a quick blog about how Mandi and I met.

On June 27th, 2008 I got a call from a friend about meeting up with the group for a movie and some drinks. I politely declined as I was determined to spend the next few months holed up in my house and have no resemblance of a social life. Well, I guess you need the backstory on that...

Just one week prior, my girlfriend of over two years and I decided that it would be best to go our separate ways. We had a good relationship, no real issues to speak of, but we knew that it was not a forever type of a thing and continuing the relationship would be futile. I was more sad about losing a friend and someone I enjoyed hanging out with than I was about losing a girlfriend. 

After breaking-up, I did a lot of soul-searching and praying and something became very clear to me - I wasn't dating the way God would want me to date and I wasn't dating the type of girls God would want me to date. It's very clear that God wants us to be equally yoked, meaning that both the man and the woman are going in the same direction towards the same God. Even though I had been a part of the church my entire life and had been in relationship with Jesus since my youth, I had yet to date or be in relationship with someone I was equally yoked with. I dated plenty of nice girls, just never the right girl. Ultimately, I knew that if I wanted a life-long successful marriage I would have to find a woman who was in-love with Jesus as much as I was.

I vividly remember humbling myself before God and asking for forgiveness by the way I had been dating. I knew I wasn't dating His way. I also knew that if I ever wanted true success, I would have to date His way. 

And now back to June 27th...so I declined to meet up with my friends that day because I had a history of not being able to be social, without meeting someone. I know that sounds stupid, but I very rarely had no one around. I pretty much had a girlfriend, someone I was "dating" or "just a friend" from 1994 to June 2008. I was pretty sure that being alone for a while was exactly what God wanted me to do. Well, He of course had different plans.

After repeated calls and requests from my friends that day, I finally said "yes" to going to the movie after I was promised that I could show up when the movie started and leave when it was finished. Sounded pretty harmless to me, and since you can't talk through a movie, I figured I was in the clear.

I showed up to the movie theater with about 5 minutes to spare and found my friends who were already sitting in their seats. I gave the obligatory wave and hello and sat down next to my buddy Bryan at the end of the row. I knew everyone who was there, except I couldn't quite pinpoint who the girl sitting next to Bryan was. I had met her before, but only briefly and had no idea what her name was. Being the gentleman that I am, I introduced myself to which she responded, "I'm Mandi and we're going to get married one day." Just kidding. She just told me her name and reminded me that she was Bryan's roommate's little sister.

I honestly don't remember if Mandi and I talked before the movie started, but I do know that she laughed at basically anything I said to the group or to Bryan. At the very least, I was happy to have her around because I'm pretty sure my friends were tired of my jokes. In my mind, anyone who made me feel like I was funny deserved a spot in the group :) 

After the movie was done (I have no idea what movie it was), I decided to join my friends at a little wine lounge close to the movie theater. 

To be continued...

Ronnie decided a he said-she said was in order after a little discussion unfolded on a picture he posted on Facebook. The picture was of how hideous his face was the first 6 months we dated. HA! I kid…eh actually I’m not kidding. It was ridiculous. But the conversation wasn’t really about that. It was between my mom and Ronnie about what in the world they must have been thinking the weekend we met. Ronnie and my parents got off to a “rocky start” (kind of, not really)…and Ronnie thought it’d be good to share the happenings of that first weekend. To really spice things up, we should ask my mom and dad to each write their accounts of that weekend. Hm, now that I think about it…that may be needed.

So, onto that first weekend. And apparently, I’ve just been informed just that first night…for now.

June 27^th, 2008^th I was home for the summer. I went to school at Syracuse University, but my parents and brother all lived in Arizona, so that’s where I spent my breaks.

My parents moved to Arizona after my freshman year of college and my brother happened to get a job here after he graduated from Penn State. I didn’t know anyone here, but since my brother lived here and had made friends, I tagged along with him. His friends soon became my friends. My brother is an incredible guy. I always loved him when we were younger, but as I grew up, I learned to appreciate my brother even more. He’s a man of incredible character. He is endlessly funny. He is compassionate and fun to be around. He is his own person. He always has been. What you see is what you get when it comes to Josh. It is probably his most endearing quality. He is a social guy, but not a guy to hang out with people just for the sake of being with people. He has always been the type to hold friends near and carefully select who he spends a bulk of his time with. I knew anyone he chose to surround himself with would be a person that was worthy of friendship. In a way, he did all the work for me. I would come home from college and knew that I was spending my days with some of the best people to be found in Phoenix. He doesn’t know this, but one of my favorite parts about college breaks was the fact that I would come home, and get to spend time with my brother in a way I never had before. I got to spend time with my brother as my friend. It completely transformed our relationship in a way I cherish. But anyways, that’s not the point of this blog, I can love on him in another blog. The point is, I came home from college and hung out with my brother and my brother’s friends…who I knew must be good people if Josh was choosing to spend time with them. Fast forward…

That Friday night, June 27^th, we decided to go to a movie. It was my brother, my brother’s then roommate, Bryan, and maybe one other friend (how’s that for memory?) Bryan mentioned that maybe one other friend of his would be joining us. We saved a seat for him…whoever he was. I didn’t recognize the name, but figured if he was friends with my brother’s friends, he must be a cool guy. Bryan’s friend showed up after the previews started. He sat down next to Bryan, who was sitting next to me. Killing time waiting for the movie to start, he began chatting with all of us. For some reason he was throwing out brainteasers, not my strongest area. I kept my mouth shut. My genius brother (I am not being sarcastic, he’s really smart…), on the other hand, ate them up. Bryan’s friend cracked jokes as the conversation unfolded. He was funny. Really funny. “What was his name again?” I thought. I hadn’t really paid much attention, until he opened his mouth and was one of the funniest people I had ever met. I love a sense of humor. Every girl has an Achilles heel when it comes to guys. For some it’s looks, for others it’s money…for me, it’s a sense of humor. If you can make me laugh, you are a winner in my book. I’ve dated guys about as varied as you can find…some short, some tall, some rich, some poor, some smart, some really, really, really dumb (yes, it was that bad). But they all were funny. So anyways, as soon as I realized how funny he was, I took notice. It was too dark to really tell much else about him. I couldn’t really tell if he was tall or short; he was sitting. I couldn’t tell if he was good looking or ugly; it was dark. But he was funny. I got nervous. Really nervous. I’m not sure why, but I clammed up and was afraid to talk because I didn’t want to make a stupid joke. I’m not not funny, but I’m not the funniest person you’ll ever meet, which means I fall right in the sweet spot where I make a lot of really, really, not-funny-at-all jokes. And I’m cool with that. I own it…once I know someone. But this guy was really, really funny. Really, really funny people hate stupid jokes. So I shut up.

….then the movie started. 

To be continued...

Are Gene Patents a Good Thing??

Report finds gene patents prevent competition, don’t promote advancement

BY CONNIE KARAMBELAS

A report published Wednesday by Duke University researchers concluded that gene patents and exclusive licensing do more to deter competition in the gene testing market than they do to further the development of new technologies for measuring the risk of disease.

Dr. Robert Cook-Deegan, director of Duke University's Center for Genome Ethics, Law & Policy in Durham, N.C., said, “It's notable that a gene linked to cystic fibrosis is not subject to an exclusive license, yet there is now a vibrant market for tests to identify carriers of the cystic fibrosis gene. This suggests the problem is not patents, per se, but how they are being licensed, particularly by universities.”

Published in the journal Genetics in Medicine, the study’s results are the product of eight case studies on 10 clinical conditions, including cystic fibrosis, hearing loss, breast cancer, colon cancer, Tay-Sachs disease and Alzheimer’s disease. Researchers from the Duke Institute of Genome Sciences and Policy and Duke's Center for Public Genomics conducted the research.

The question of patening genes has been in the news. Last month, a federal judge in New York ruled that patents should never have been granted genes to test for break cancer.

More than 20 percent of the human genome has already been patented by various scientists, academics, and companies. This translates into about 4,000 genes, the Anmerican Civil Liberties Union noted in its case against Myriad Genetics and Laboratories in Salt Lake City, Utah.

Duke researchers found that most of the scientists and researchers they interviewed, specifically pertaining to Alzheimer’s disease, were ambivalent when it came to patenting, and none attributed the races to trace the genetic origins of the disease to patents.

“The races were driven by wanting priority of scientific discovery, prestige, and scientific credit, and the ability to secure funding for additional research based on scientific achievement,” the researchers reported.

While this was reported for Alzheimer’s, the study outlines that the same is primarily true for the other diseases researched. Gene patents did nothing to promote innovation in terms of new technologies or methods for determining disease risk, the Duke researchers reported.

“If patents added ‘the fuel of interest to the fire of genius,’ in Abraham Lincoln’s famous phrase, it was here at best a tiny pile of kindling at the outer margin of a large conflagration,” the researchers wrote.

There are additional problems with exclusivity according to Dr. James P. Evans, a clinical professor in the genetics department at the University of North Carolina – Chapel Hill (N.C.), who wrote “Putting patients before patents,” a commentary on the case studies.

A patent holder exclusively licensing a laboratory to conduct the tests for a certain disease risk results in an “inability to obtain second-opinion testing and concerns over quality, given that the most robust means of quality assurance are not available in the context of a single provider,” he said.

When it comes to retesting, an exclusive license could make a difference, said Kevin Noonan, a patent attorney at Chicago-based McDonnel Boehnen Hulbert & Berghoff. “If I’m the exclusive licensee I can’t quibble with the person who says that yes, there is a cost that is incurred by having a patent,” he said. “There is a cost however, in not having the test in the first place.”

Evans also has another concern with exclusive licensing: Clinicians who are concerned about a certain laboratory have no alternative to choose from. This, he said, allows the laboratory, rather than the patients, to define the terms of testing.

“That’s a hypothetical,” Noonan said. If the exclusive licensee is doing the test in a certain lab and not doing it very well there is a good chance that people will sue over the incorrect test results and the lab won’t stay in business for very long, he said.

“There are provisions in the law, for tests coming from university labs, where the government can step in and grant a non-exclusive license to another lab. If there is evidence that the lab is doing their job poorly then patients can report this and the exclusive licensee would have to accept a sublicense to another lab,” he said.

See original article at http://news.medill.northwestern.edu/chicago/news.aspx?id=162971

No Money for Lung Transplants

AHCCCS cuts could keep some from life-saving transplants

PHOENIX -- Geneva Prendergast can't wait to hit the slopes up north for a snowboarding lesson.

That's something the 26-year-old Mesa woman never could've done prior to undergoing a double lung transplant last month.

"I couldn't breathe, you know," Prendergast said. "And, taking a deep breath -- I couldn't do that."

Prendergast suffers from cystic fibrosis.

Prior to her surgery at Saint Joseph's Hospital, Prendergast's lungs were less than 20 percent functioning.

Now, her lungs function at more than 100 percent.

Prendergast says her new lungs have given her a new life -- one her fiance, Marc Badalucco, is anxious to share with her.

"We're gonna get married," he said. "We want to travel. It's just everything and anything we've wanted to do -- we're making a list and checking it off."

AHCCCS, Arizona's Medicaid program, paid for Prendergast's double lung transplant -- which can cost anywhere from $250,000 to $650,000.

Because she was so sick, prior to surgery, she couldn't work.

And, because she has a pre-existing condition, private insurance companies wouldn't cover her.

Soon, those who are in the same boat Prendergast is in, may not be afforded a "second chance" at life.

In mid-march, the state legislature voted to eliminate AHCCCS funding for lung transplants and some heart and liver transplants.

Prendergast's mother, Barb Garday, says she's worried for those who may be left out.

"It's almost like, if you can't afford private insurance, you're life isn't worth as much as those who can," said Garday. "What will they do? I don't know what we would've done."

The elimination of funding for some transplants is part of an larger plan for cuts to AHCCCS -- which will likely go into effect in October.

It's something many legislators say they didn't want to have to do.

But, right now, with limited funds, they don't have a choice.

Original article at http://www.abc15.com/content/financialsurvival/azstories/story/AHCCCS-cuts-could-keep-some-from-life-saving/xsA2-xNCsU2kq4HJV_8omw.cspx

Health Care Reform: He Said, She Said

Because I know not all of you, or any of you for that matter, read back through comments on this blog, I thought I would highlight an exchange from Your Health or Your Wallet? The "Choice" is Yours post from a couple weeks ago. I present to you a little "he said, she said" concerning health care reform....

He said:

One thought though... For CF'ers (and others as well) you aren't really buying health "insurance." Insurance is a bet, on your part and on the part of the insurance company. They are betting that the premiums they charge you, will, on average, be a larger amount than the healthcare they are obligated to pay for. You are betting that it will be cheaper for you to pay a monthly premium, just in case some huge medical bill occurs.

For CF'ers... it ain't a bet. You and the insurance company know there is absolutely no way you could pay premiums high enough to cover the cost of your care. So bottom line... you are asking other people to pay for care you can't afford for yourself.

I would much prefer an insurance system that functions as insurance, and find the best way to provide that as cheaply as possible. And then find a way to deal with those who are un-insurable. Rather than designing all kinds of perverse incentives into an insurance system, to deal with people who insurance isn't really the appropriate means to pay for care.

Some more random comments on the post above:

Strike all pre-existing condition clauses?

We don't demand that you be able to buy fire insurance to pay for the damages AFTER your house has burned down. Or flood insurance AFTER it is filled with water. Or car insurance AFTER you've gotten in a wreck. Or life insurance AFTER you've died. If we required the above, it should be pretty obvious that what you are buying is no longer "insurance" in any sense of the word.

So why do we demand that people be able to buy health insurance AFTER they have gotten sick?

As I said above, if you have a pre-existing condition, you aren't insurable in the true sense of the word. I'm not saying I know what the solution is for those with pre-existing conditions, but I do think that basically dismantling the insurance system to deal with those issues is the wrong way to go.

More random comments:

"fair pricing despite level of health"

I assume you mean by "fair" that all people pay the same price, regardless of their health?

Once again, compare this to other insurances you buy. Do people demand "fair" pricing for car insurance for someone with a perfect 10 year driving record versus the high school student who has been in 3 accidents already? Or "fair" pricing for life insurance for the 20 year old health nut versus the 95 year old chain smoker? Or "fair" pricing for home insurance for the $100,000 home versus the 4 million dollar mansion?

So why do we demand that all people, regardless of health status, pay the same amount for health insurance?

I know, I know... people don't always have a choice in their health status, while most of the above situations are a choice. But for those who do, I'm not sure I see why their shouldn't be a consequence for health choices. For those who have no choice in their health status... like I said, I'm not sure insurance is the appropriate vehicle for paying for health care.

"My choices in my care should not be made by my pocket book, but they are, all the time."

Not trying to be offensive, so if it sounds that way, blame it on the limits of internet communication...

Why shouldn't choice in health care be made (at least in part) by money? You make choices every day based on money. Where to live, how big your house is, what kind of car to drive, what kind of job to take, what to eat, how to entertain yourself, etc. Why should health care be any different?

In my mind, part of the problem with the current insurance system is that there isn't ENOUGH decision making based on cost. With most PPO type insurances, there is very little connection between what I pay, and how much something costs. I might only pay 10%, or a $20 co-pay, for something that costs far more. Of course, I am also paying for the rest of it, but through my premiums. There is very little direct connection between the value of a health service, and how much I pay for it.

I really think the HSA route is the way to go, because it has a huge connection between cost and value. We just switched this year, and I find myself constantly asking "Is what we are going to pay for this really worth it?" (just like I do for everything else I purchase.) I NEVER recall thinking that on our PPO. If people aren't asking that question, health care is only going to get more expensive, not less. And the public option makes even MORE of a disconnect between the cost and the value.

She said:

Few things that I feel like addressing:

1. Your analogy of other types of insurance is flawed in several ways. If all insurance was ran like health insurance, then we would have a lot of problems. Say that you had a small fire in your house five years ago. It caused no structural damage, few possessions were damaged, you didn't even use insurance money for it, but called out the fire department just to make sure your house was safe. Now five years later you buy a new home and want fire insurance. If they were like the insurance company, they could deny you because of your past history of fire. Or say, you are going to get car insurance. You've never had an accident and have a perfectly clear record. You expect to be covered without a problem. However, it seems your family members seem to crash into anything on the road, and off the road, and have several tickets. The insurance company denies you because of your family history of car wrecks. Both would happen if insurance was ran anything like "health insurance".

Also, not having fire insurance, I take a financial risk if something happens. Not having car insurance, I take a fiscal and legal risk. Not having health insurance? Not only is there a huge financial risk, but you are also risking your life. No other insurance is that true of.

2. Making decisions based on pocket book. Yes, I decide where I live, what I spend descresionary funds on, and how much I drive based on pocket book. But I can live in a cheaper house, not buy that shiny new computer, and drive a 10+ year old car... it's not going to kill me. But not getting drugs, going to the doctor, and millions of other things that are involved in health care very well could kill me.

3. I think of health insurance, or how I think health care should be paid for like the police, or the fire department, or like countless other services that my tax dollars go to. I haven't needed police help in years, but I'm very happy they are there if I need it, and I know that my community is a better place for it. My neighbor had a garage fire this week, that without the quick reaction of my neighbor and the fire department, I would have lost my own home. Again, something I pay for, rarely use, but am very glad they are there when I need it. I don't have kids, but I know that my community is better by tax dollars that go into their education, removing them from abusive situations, and helping them get vaccinated if they can't afford it. I've never been on food stamps, but I know that my community is better if everyone has something to eat. The same thing could be said about healthcare. Yes, I use it often, and many people out there wouldn't, but everyone's lives are made better by everyone having a chance at health. I don't understand how anyone could think differently.

4. HSAs are a crock. Spend a single day in a hospital and the $6,000 bill will eat through nearly every HSA account I've seen. Let's hope you don't need surgery, ongoing medication, or more than one day in the hospital... because not only is your healthcare money gone, but you also can't be insured again.

He said:

1) Sure, the analogy isn't perfect. But it is true that people are demanding things of health insurance that we don't demand of any other insurance we buy. And those demands transform it into something that is no longer insurance.

2) Again, I'll agree health care is somewhat different than other things you buy. Although where you live or what you drive could also kill you. My point was more that your comment implies you should be able to decide on your health care options regardless of cost. That isn't reality, just as you don't make any other decision regardless of cost. Which is why people argue that public healthcare always leads to rationing. Because when we don't pay for it directly (ie we make healthcare decisions with little regard to the true cost) we end up demanding far more healthcare than if we paid for it directly. We demand more healthcare than we can collectively pay for. And since the gov't controls the public option, they end up deciding based on the collective pocketbook. Which is exactly what many people are opposed to.

3) So did your neighbor have fire insurance, or did the fire department pay for all the damage caused to his house by the fire? The police only come to collect the evidence after the crime. They do nothing to reimburse you for the ongoing effects of the crime. The fire department shows up to put out the fire. They do nothing to pay for the damage your house suffers (in fact, that is why you buy fire insurance.) I would argue the healthcare equivalent to the police or fire department would be EMTs, which, oddly enough, already exist.

4) Our HSA is working just fine, thank you. And yup, one day in the hospital (which my wife already had this year) will wipe out your HSA account for the year. Which is exactly why you have an insurance policy connected to it. After her hospital stay, we had paid our deductible, and the insurance covers 100%. If I desire, next year I can switch back to the PPO that my employer offers, although I see no reason to do so. HSA's provide an incentive for me to actually attempt to save money, to consider whether the value of the service is actually worth what I am paying for it. It works exactly like insurance should... I pay for the little day to day stuff, but have insurance in case of an emergency. It's not a crock for us, and is actually working quite well so far, even with a major hospital stay.

Here's a great article in the WSJ with some excellent suggestions for how to reform the system, without going to single payer...

http://online.wsj.com/article/SB10001424052970204251404574342170072865070.html

So, who do you think wins this one? The "he" or the "she"?

I love that they both took this opportunity to share their opinions. Thanks guys! If you'd like to share your thoughts and opinions on Health Care Reform please contact me for the opportunity to write a guest post.

The Night We Met by Ronnie and Mandi

In this first edition of Sound-off Saturday I decided that Mandi and I would recap the story of the night we first met. Here's the deal though: We each wrote separate stories and had no knowledge of each other's story while writing. So here it is, a "he said, she said" about that fateful night in June when Ronnie met Sally...I mean Mandi.

Ronnie:

I first want to stress that I had met Mandi about 6 months earlier during the Christmas season while she was home on break from school. It was a very basic meet and greet and I didn't come away with much of an impression. We literally said "nice to meet you" to each other and that was it. The only initial thoughts I had was that she was smart and kind of stiff. Not so much stiff should I say, but she just sounded proper and educated, plus she had these librarian glasses on. Other than that, I knew only that she was the little sister of my good friend's roommate. I wasn't in the market for a girlfriend (my girlfriend at the time actually met her at the same time that I did) and I was enjoying myself listening to some of my friends play in their band, so I wasn't being a social butterfly. The next time I saw Mandi again was June 27th, 2008.

At this time I was again a single man, but not back in the market (or so I thought). I had recently ended a relationship so I had decided to lay low for a while and not even make very many "public appearances". See, I meet people very easily. I'm able to hold a conversation with absolutely anybody at anytime and while I understand that I don't have to date somebody just because I speak to them, I wanted to take that option off of the table. Friday night of that week rolled around and I was planning a nice quite evening at my house to catch up on some movies I had yet to watch. I got a call earlier in the day from friends wondering if I wanted to join them for a movie and I politely declined. The night time had now arrived and just as I was getting comfortable on my couch I got a call from my buddy Bryan, "Dude, why don't you just came hang out with us?" he asked. "Because I don't feel like hanging and I've already sat on my couch to watch a movie" I replied. "If you're going to watch a movie anyway, it should be with us" to which I replied "Dangit Bryan, what theater are you guys at.". Usually I don't succumb to peer pressure, but for whatever reason, that night I decided to appease my friends.

Mandi:

I met Ronnie on June 27, 2008. I was home from school for summer break and since I wasn’t from AZ, I tagged along with my brother, Josh, and his friends to a movie. I had been hanging out with them for quite some time, so I knew all of the people going. We were sitting in our seats waiting for the movie to start (I think it was Wanted that we were seeing) when Bryan, one of Josh’s friends, said, “Ronnie’s coming, so we need to save him a seat.” A few minutes later, here comes a guy with khaki shorts, a t-shirt and “the messy hair look” walking up the stairs, stopping at our row. Everyone said their hellos (all knowing each other) and then Bryan said the words that would change my life forever, “Oh yeah, Ronnie, this is Mandi, Josh’s LITTLE sister.” Boom...fireworks, we fell in love and lived happily ever after. Haha I wish! We sat there waiting for the movie to start, Ronnie was telling riddles and having Josh, who’s a genius, solve them in a matter of seconds. Ronnie made several jokes throughout the first 5 minutes and had me cracking up. Point one for Ronnie: He was a funny man. Because he was so funny, I got super nervous to make jokes because funny people have a higher standard when it comes to funny...and I’m afraid I generally don’t make the mark. Suddenly, hunger struck and I went to get some candy. As I crawled over the other members of our group and passed Ronnie, who was on the isle, I asked if anyone needed anything, to which Ronnie replied, “I kinda need to pee, think you could do that for me?” I playfully rolled my eyes and said I’d see what I could do. When I got back I made sure to get a few sexy, intriguing lines in there like, “Want some m&ms” and (handing him the m&ms again) “Help yourself”. I made occasional eye contact with him as he made little comments during the movie, but there unfortunately, that was it.

Ronnie:

I show up for the movie just in time for the previews (which are my favorite part of the experience) and give a quick greet to everyone. I remember re-meeting Mandi and I believe a friend of mine was sitting in between her and I. I should just warn you guys now, if my story sounds completely different than hers, just believe hers is actually the way it happened. I have a TERRIBLE memory. I'll often recap a story to a friend about something awesome he missed to which he will reply, "Yeah, I was there. I was sitting right next to you". Whoops. Or when I asked Mandi about how much fun we used to have playing Boggle together to which she responded, "I've never played that game". Double whoops. Anyways, I'm getting off track. I don't think there was much conversation before the movie started between any of my friends (although now I'm starting to remember playing some kind of game, but that was a different time I think). So the movie Wanted (I think) started and was entertaining as I remember although I can't recommend it to any of you because of the language. After the movie ended we all decided to head to a local (and favorite) Wine Bar called Armitage.

We got there and claimed one of our favorite couches and just started hanging out. I'm pretty sure that Mandi and I started talking almost immediately when we sat down. I'm sure we exchanged some normal stuff but then we got into the heart of what dominated our conversation for the rest of the night- relationships. Since I had recently gotten out of a long-term relationship, the topic quickly started to focus on my ex. As I recall, I did a lot of mental "dumping" on Mandi about what I thought went wrong and what I would do the next time and what I was looking for and yada yada yada. She then analyzed me like an armchair psychologist and soon was telling relatable stories. It was so nice to meet someone who seemed to understand where I was coming from and could sit there and listen as well as dominate a conversation. I've always been used to being dominate in conversations (not that I want to), so this was a welcome relief. I was able to sit back and just listen to her speak (diagnose my situation). Now, she'll tell you the opposite. That I went on and on about my ex and wouldn't shut up. That she never got a word in. What I remember though was me dominating the first 40% of the conversation and then her bringing home the last 60%.

I also remember her completely ignoring some friends of hers that showed up to hang out with her. This told me something about her that night- she actually about what I had to say and was enjoying our conversation, not just putting on a show. I remember her making me feel like I was the only other person in the bar that night. I have to say, it felt really good. What other impressions did I form that night? Instead of thinking of her as stiff, I realized that she was incredibly smart, articulate, and well-spoken, but anything but stiff. She was full of laughs, jokes, stories and just down right entertaining. I was very impressed by her. Even on that first night I remember thinking, "Man, she's like the total package". There was a couple big problems though, I wasn't in the market for a relationship and she was the little sister of a guy in our "crew". I couldn't be that guy. Plus, if we're going to be honest (which Mandi has heard this before), I really didn't think she was my type. She was blonde and she had freckles- two looks that I generally didn't go for. Throw in the fact that she was "related" and lived 3000 miles away and still in college, the last thing that crossed my mind was a relationship.

Mandi:

After the movie we all went to one of our favorite spots, Armitage, to listen to live music. I “happened” to sit next to Ronnie (You will begin to realize, I’m a VERY strategic thinker). I began to ask him questions and soon realized he had JUST gotten out of a relationship. Minus one point for Ronnie: Baggage. I began to poke and prod about him and his ex (had to know why they didn’t work so I could know what NOT to do, right?). He had no bad things to say. One point for Ronnie: Nice guy. Minutes turned into an hours of talking about him, his ex, his life, his CF. What’s that? It was all about him? You betcha...I managed to make him think I wasn’t a big talker...SUCKER. No, I actually enjoyed listening to him talk about himself. He had a way of talking that hooked me. His laugh, his mannerisms, the way his eyes would light up when I would say certain things. I loved it. One point for Ronnie: He was interesting. So I just kept digging. I couldn’t tell you how long we sat there talking. Conversation just came easy with him. There was never a lull. I was hanging on his every word. I remember wishing this night wouldn’t end and that I could learn more about this green-eyed, playful friend of my brother’s. To ensure this wouldn’t be the last I saw of him, I began to plot again. At some point, someone was leaving and mentioned future weekend plans. I quickly threw out an offer to make everyone blueberry pancakes the next morning (genius: where there is food, Ronnie will come). Ronnie agreed to show and Bryan offered up his house. Perfect, this would not be the last I saw of him.

Ronnie:

We ended up hanging out for a bit after everyone else had left back in my truck listening to music. The conversation turned towards our tastes in music at some point and she had not heard of some of what I thought were "classic" songs I was mentioning. We chatted for a while longer as I played some tasty treats for her ears. I can't recall a single conversation that we had in my truck as we listened to music and I think I was half asleep, but I do know that I loved every minute about it. She was just so easy to hang out with. After an hour or so of music we parted ways and she left me with question (which probably put us on the road to success) "If I make pancakes tomorrow morning for you guys at Bryan's house, will you be there?"

I couldn't wait for the next day.

Mandi:

Ronnie and I continued to talk as people trickled out. We eventually decided to leave since it would be an early morning of blueberry bliss. But as we were wrapping up our conversation, music started to be discussed. One point for Ronnie: He loved music. (If you’re keeping score, he’s up in points big time). Ronnie tricked me into listening to the songs he was talking about that I had never heard. Could it be that he too wasn’t ready for the conversation to end? It gave me a little hope (although he’ll tell you he WASN’T interested at all and really just wanted me to hear the songs). We walked to his car, which, to my surprise, was a Ridgeline truck. Why was that surprising? I have no idea...just surprised me. I didn’t know then, but that was the first of many surprises Ronnie had in store for me. We jumped in the FRONT SEAT (for any of you who were trying to predict the story) of his truck and he began to play song after song on his ipod. Before each song he would swear was better than the last, tell a story to set it up, or act amazed that I had never heard it. We sat singing songs, talking, laughing. A few hours past, and we decided that it was actually time to wrap things up, as we would see each other in just a few hours. I gave him a quick hug, told him how awesome it was to meet him and get to talk (I tried to play it cool while still letting him know that I thought he was the coolest thing since snap bracelets), jumped out of his truck, and walked to my car, on air.

I don’t know if I ever told him this, but I had trouble falling asleep that night. I was like a little kid on Christmas eve, anticipating the morning, when I’d get to see him again. And if I had known what I know now about Ronnie, and if I had knew where we would be today, I would have been even more excited.

This is a bench outside of Armitage. Mandi made breakfast and we ate there for our first anniversary. See the post here.