A letter from 40 year old Andy to 18 year old Andy

My chance to be Marty McFly!

Dear Andy 1991,

I just wanted to say hello and talk to you. I'm coming to you from the year 2014. There have been a lot of changes in the world but especially with us (you and me). I know that you're going through a rough time. You just turned 18 and started college and now Howard died and he was your best friend growing up. In 2014, I actually have 2 dogs but I still celebrate Howard's birthday every April 1st. I don't celebrate it by putting a candle in a burger like I used to. Now I just think about him and remember how loyal he was. I have a girl dog Magic and a boy dog Buddy. Magic is like Howard in that she's kind and always there when I do my therapy. Buddy is crazy like Howard was and he has that amazing sense that only Howard had to know exactly when you needed to be licked in the face. Man, I still miss that great ball of brown fur.



Howard was one of a kind.

I know that you feel ugly and awkward and that feeling won't go away for a while. I know you're afraid to talk about your cystic fibrosis and you're even embarrassed by it. I have several promises to make to you. One, things will get worse before they get better...but they will indeed get better. Two, that machine will get smaller and quieter. I know it's obnoxious. You are actually going to want to talk about your cystic fibrosis one day. Remember that being a leader is a lot more important than being a follower especially with the platform that you'll have. Being different is not necessarily a negative. It can lead to opportunities that for many would be impossible.

Andy, you have an issue with anxiety and depression. Get help. You may think you look weak for doing so but it's quite the opposite. Trust me. If you don't get help for you, get help for the people in your life right now and those you will someday meet.

I know you're afraid to date because you feel like girls look at you funny. Maybe you should stop shopping at K-Mart to buy your jeans and comb your hair every now and then. Sorry, cheap shot. Anyway, you'll meet a guy named Aaron and he'll help you with how you dress and a change in attitude in regards to dating. Listen to him even if he insults you a little bit. It's for your own good. You will finally start dating in college and CF will be a topic that you will have to talk about. It won't be easy but you'll see that these girls that are dating you only care about you and that's why they ask. If you care about them, you'll need to be open about the topic and less apprehensive when it comes to talking about it. It's a two-way street.

So here's where we stand in 2014...yes, 2014. You turned 40! I know you thought you wouldn't even hit 25 but you showed the world that you could fight. On your 25th birthday, it came to you that you needed to start making a difference and that dream about that little girl you've been having for a long time, it's finally going to make sense.

You found your one and only and got married. You have 2 kids. Yeah, that's crazy, right? You didn't think you could have kids. Medical science is an amazing thing. I won't tell you what genders your kids are but just know that no one will ever doubt they are your kids when they look at them.

You'll have your ups and downs with cystic fibrosis. You'll be introduced to IV antibiotics and several new treatments. You'll be doubling and sometimes tripling your therapy daily. You'll also become a workout fanatic. I know that sounds crazy because right now you look like a bean pole. You finally ran the Peachtree! Exercise is a key to beating cystic fibrosis. The doctors aren't harping on that yet but I'm right on this one.

You're going to get an opportunity to work with your father. Take it. It has nothing to do with the fact that the company ends up thriving. It has everything to do with getting to know your father. He's a good man.

Here are 20 more things you may want to know:

1. The Karate Kid was re-made. Yeah, I was pretty pissed too.

2. Atlanta has the biggest aquarium in the world now. No ocean but plenty of sea life. Makes sense, right?

3. You hated to read for most of your life and English class was not your favorite subject but believe it or not you end up becoming an author.

4. Your 5th grade teacher told you to sit down one day because you had trouble memorizing a poem and speaking in front of the class. You'll show her.



Ms. Stansbury, thanks for the motivation.

5. Don't stop the corny jokes. A sense of humor is important when dealing with a disease like cystic fibrosis. Yeah, I know you sound like a moron and your friends tell you that your jokes are horrible but it's your comical self that makes you the guy that so many people like. More importantly, that's the person that you like.

6. I know you hate your nebulizer but one day you'll figure out a way to raise CF awareness using it as a central storyline.

7. You are not alone. I know it feels like it right now but there are a lot of people that have the same feelings and concerns that you do.

8. If someone knocks on your dorm room wall because your therapy is too loud, knock back. It's time you stood up for yourself.

9. A cure is not as unrealistic as it once seemed. Take care of yourself and when the day comes, you'll be ready.

10. Remember everyone who told you that you couldn't do something because of cystic fibrosis. Write their names down. One day you'll prove them all wrong.

11. Don't cry during the movie "Titanic." Your roommate Ross will never let you live it down. My wife (one day to be your wife if you're lucky) has reminded me that if you get an itch one day to dye your hair blonde, don't scratch it. However if you do, make sure NO ONE gets a picture of you afterwards. That's blackmail.

12. If someone tells you about a stock called Enron, don't ever talk to that person again.

13. Game 5 of the 1994 NBA Finals is one of the most important telecasts ever and it had nothing to do at all with the game itself.



A historic moment during the 1994 NBA Finals

14. I realize it's 1991 right now and the Braves are doing amazing. Avery, Smoltz and Glavine are the three top Braves pitchers right now (though we'll get a guy named Maddux soon who is not bad either). I will tell you this. In 2014, one of these 3 is in the Hall of Fame. One of them will most likely be elected next year. And the other will have more significance to you than either one of the other two...it has to do with his last name.



Great name!

15. Listen to your grandmother when she tells you stories about her Holocaust experience. That woman is an example of strength and courage.

16. If you need some alone time, go to a showing of "Glitter" starring Mariah Caray. Trust me, no one else will be around.

17. You'll learn a little bit more about your older sister. I don't want to tell you a lot but you need to ask Mom more about her. I know you just assume not know who she was or why she died but you need to know. It's pivotal to who you become.

18. The Braves won a World Series...yeah, enjoy that day because it's not going to be much better for any of our sports teams for a while.

19. A girlfriend of one of your old fraternity brothers is having a party in 1999. Your friend Ira is going to ask you to go. I don't care what kind of mood you're in that day, GO TO THE PARTY. That's where you meet the girl who will change your life. Dress nicely too. Remember, no more K-mart stuff!

20. The best has yet to come.


Hang in there my friend.

Best Wishes,

Andy 2014

The "Vest" Thing to Happen for my CF in a long time

Hello everyone,

It's been a busy few weeks.

Two weeks ago I got to speak at my alma mater The University of Georgia. The speech went great. I had a lot of good feedback and was thrilled to have so many friends and family members in the crowd. I have 2 more speeches coming up. One is scheduled for Chattanooga and the other in Kansas City where I've made time to visit Kaufman Stadium to watch the Royals play.



Honored to have Abram (pictured) and his wife Cookie at my speech

Andrea, myself and the kids were just in Rhode Island for my cousin's engagment party. It was a wonderful weekend. We celebrated Andrea's birthday while we were there and took a trip to Boston (see the picture attached). The kids were great on this trip. It was great to see my cousin Barrett so happy. It was also wonderful to see my Aunt Loretta (Barrett's mom). She is such a wonderful person. And of course it was wonderful to see Barrett's fiance Alma.



25 again...thanks Aunt Loretta for going above and beyond to make Andrea's birthday special



Boston strong

We got Buddy back from his month-long training session and he seems to be a new dog but a bit bigger. He's still as cute as ever though. Now Andrea and I are the ones who are in training.

On the Health Front...

Well I received the Afflo Vest a few weeks ago, a new product out of Europe that only requires a battery rather than electricity to work. I'm reporting my findings to the Emory Clinic as I am the first patient from the clinic to use this vest. So far, so good. I'm combining it with the Hill-Rom vest in the morning and then using the Afflo Vest at lunch and then driving home. Yes, I said "driving home!" The advantage of this is that I get an extra hour to spend with Andrea and the kids. All I have to do when I get home is clean the nebulizers and charge the battery for the Afflo Vest and Trek S nebulizer machine. I've only been following this plan for a few days but I have to say it's a welcome change. If my PFTs go up after using this vest, this change will be permanent. The other great thing is now I'll be able to do something that I never in my life thought I could do...overnight camping!!! I've always wanted to have the freedom to do something like that. I know it sounds silly that someone could put this on their bucket list but for someone with CF it's not ridiculous at all. If you're worried by the way, doing my vest in the car is nothing like texting and driving. I'm watching the road the entire time. I just hope to avoid any speeding tickets as the officer will probably have a lot more questions than "Do you know how fast you were driving?"



"We got a code 405082 over here." "What's that, officer?" "I caught him nebulizing, vesting and driving, sarge!"

Just so you can understand how important it is to have a machine that is easy to travel with, here is a shot of my old machine which still lies in a closet in my parents' house. The machine, a 1989 model, still works today but is 50 times louder than the Afflo Vest, has lights to warn me about fire hazards and weighs at least 75 pounds! The loudness was a problem at school when others around me were trying to study hence the constant knocks on my dorm room door whenever I used it. That's enough to make any CF patient feel alienated. The fire hazard always scared me because I had to be sure to keep water away from it. I didn't feed it after midnight or let it see sunlight either just in case. Ha Ha! The weight was the biggest problem as it was almost impossible to fly with it. Thank you Hill-Rom and Afflo Vest for making my traveling a lot easier.



The dinosaur of therapy vests

I'm hoping that my PFTs will improve over last time. I have felt really good lately. I even shocked my trainer yesterday as she thought I'd be begging to quit after our most recent workout. Instead, not only did I not beg to quit, but I broke my record on the row machine. My current record for 250 meters was 2:06. Today I did it at 1:47...and that was at the end of my workout! I hope it's the Afflo Vest or maybe it's the fact that I'm doing my Hypertonic Saline 3 times a day during the week or maybe it's because it's warm out and I'm getting more outdoor activity. I'm also running a lot faster on the treadmill. I ran the Peachtree in 80 minutes and was gassed. I was so frustrated with my performance that I changed my running style. Instead of running 15 minutes at 4.0 on the treadmill. I'm now doing three 5-minute intervals between 5.0 and 7.0 and sprinting the last minute for all three. The change has also shown up on the softball field as I'm sprinting around the bases as if I'm back in my twenties. I hope it will show up at the doctor's office, too.



Just "running" the Peachtree isn't enough anymore

The great thing about the new vest is it seems to reach places that the Hill-Rom vest didn't and has different modes. It's not just vibration. I am continuing to work my tail off in the gym and at home. I'm very lucky to have an amazing wife and two really good kids. I'm not working hard just for me. I am doing this for Andrea, Avery, Ethan, Magic and now Buddy too.

Anyway, I hope that everyone is doing well.

Live your dreams and love your life!

Thanks to a great support system and the new Afflo Vest, that's exactly what I'm doing.

Andy

Another CF drug breakthrough...and what it means to me

It's an exciting time to have cystic fibrosis (CF)!

Who would ever think to hear those words? That sentence alone probably makes me sound certifiably insane.



I mean do I look like a guy with issues? Important note: I'm on the right in this picture.

Cystic fibrosis is one of the toughest, nastiest diseases that the world has ever seen. It doesn't just affect the lungs. It affects the digestive system and the reproductive system as well. It also makes patients more apt to have other diseases and conditions including certain cancers and CF-related Diabetes. Moreover, it continues to be one of the most life-threatening genetic diseases that the world has ever seen.

As cruel as this disease is, there is now some hope. There have been a lot of new drugs hitting the market as well as some great news from drug studies. Here is just one example:

http://online.wsj.com/articles/vertex-says-late-stage-cystic-fibrosis-treatment-studies-meet-endpoint-1403610720

Now if you read this article, the results state that improvement averaged only 2 to 3% and some patients got off the drug due to side effects. There are many that say these numbers indicated that this isn't much of a breakthrough. The truth is though that any type of a breakthrough is still a breakthrough and I as a patient am very excited not only about this new treatment but about the potential of having even more of them.

As a kid, I would have given anything to hear the kind of news we're hearing today. There were no breakthroughs when I was growing up. There were no adult CF clinics. Very few people lived that long. Most people who knew me had never even heard of cystic fibrosis. The common questions then were "Is it contagious?", "Can you just have it removed" and "Is that bad?". Some even asked if it contributed to my poor sense of humor. Due to all the notoriety these new treatments and studies are getting, those questions are becoming fewer and fewer...well except the last one.

Whenever I would go in to see my doctor as a kid and even as an adolescent, the typical answer in regards to when a potential breakthrough would hit was "7 to 10 years" which sounded more like a prison sentence rather than a hope for a cure. I felt defeated because those numbers never changed. I'd heard "7 to 10" when I was 10 and I heard that same timeframe when I was 20.



I acted tough back then but in reality I was scared to death of my prognosis.

Vertex and the CF Foundation continue to work to find a cure and while there is no cure as of yet, there are several new drugs in the pipeline (like the one in the article above) that are either now available or will soon be available to those who badly need them. The combination drug for my genotype is not available yet but I know they are now working on it both in Israel and the United States.

I remember the days when I was in my twenties and had to go to a children's hospital to see my CF doctor. When I went for X-Rays, they asked where my son was as they assumed I was the father since a) very few people lived to adulthood with CF and b) I was in a children's hospital. Or maybe they were taking a stab at my maturity level. They would not have been the first.

Cystic fibrosis works harder than any person in the world. It never takes a second off. Even when we as patients sleep, mucous tends to fill our lungs and we have to cough up several cups of phlegm when we wake up.

CF has changed throughout my life but it has never been removed from my Most Wanted List. As a young kid, it annoyed me because I had to lie down for 30 minutes a day while my parents hit my back, sides and front - a procedure called postural drainage. As a preteen, it aggravated me because I couldn't do the things that a lot of kids could - overnight camp, trips without my parents and being around anyone with even a sniffle. As a teenager until my early twenties, I felt alienated because of my CF. I hated traveling with a 50-pound machine even though it beat postural drainage. The irony was that CF patients are mostly skinny and lack energy yet the machines we used were remarkably heavy for even weight-lifters to carry. For the last 20 years, CF has affected me in trying to have a family, dealing with IV treatments and trying to live life without interruption as an adult.



It didn't matter whether I was a youngster...



or an adult. Cystic fibrosis got the better of me for a long time.

I hate this disease and a few decades ago I would take that hate and use it to hurt myself. I would give in to depression. I would stop doing my meds. I would refuse to read anything regarding research or things I could do to better myself.

Today I have reversed that sense. I now comply with my treatments everyday - now twice a day and sometimes three times a day. Over the last 20 years, I've rarely missed a med or a treatment. I make sure to go to the doctor at least once every 3 months and I am a workout fanatic. I know that somewhere there is someone who thinks that he or she is working harder than me. I refuse to let that be the case. I still deal with depression but I also see a therapist and psychiatrist and take antidepressants. I don't believe that admitting that I have a problem is a shortcoming. I believe, in fact, that it is one of my biggest strengths. I now read countless articles regarding research and listen to other patients to see what they're doing that has helped them be successful in the fight against CF.



Running the Peachtree Road Race, a 6.2 mile run in Atlanta, every year (this year marks #18) is one way I fight against CF.

As tough as CF has been, I'm very fortunate. I have a loving wife. Andrea has helped me with my IV's and been by my side through everything. She knows when to give me encouragement and when I need tough love. Anyone with CF knows that our partners play a huge role as to how well we do.

I have been fortunate in other ways too. To be successful with In Vitro Fertilization once is a miracle in itself. Andrea and I have been fortunate twice. I don't just give my all for me anymore. It's about Andrea, Avery and Ethan too.



I have a lot of people in my corner.

Each day I do 2 hours of treatments, take 30+ pills and make sure to exercise for at least 30 minutes. I used to be bitter about the regimen I had but now I'm proud that I can still do these things and be a CF fundraiser, a full-time employee and a loving family man as well.



New treatments or no new treatments, I'm beating this disease!

My pulmonary function has diminished over the years which is common for people with or even without cystic fibrosis. Still I'm in really good shape for someone with the disease. Maybe in 7 to 10 years I won't have this disease anymore.

Now more than ever that seems possible.

Like I was saying, "It's an exciting time to have cystic fibrosis!"

And now you know why.

Live your dreams and love your life!

Best Wishes,

Andy

An update on my health

As I sit here on a warm day in mid-June, I have a lot to be thankful for. I have been working my tail off the last few months to get my health back to where it needs to be. I think I've done a good job. My PFT (Pulmonary Function Test)numbers have gone from the high 60's to as high as 80 on a recent PFT at home. I did a PFT at home yesterday and my score was 78. My weight has gone from the mid-160's to around 175. I'm now doing my treatments three times a day as opposed to two. I'm also doing a device called the Acapella three times a day as a way to get rid of mucous. I'm also in the midst of ordering a new vest which will be much lighter and easier to transport. I have been working on eating better which has included more fruit and less M&M's. I have to thank my wife for all the mangos and grapes. I continue to work out 7 days a week which includes working out twice a day some days. I continue to go to a trainer twice a week.

What's my motivation to get better? It's simple. I don't just want to be at my kids' high school and college graduations. I still want to be running the Peachtree Road Race at that point. Speaking of the Peachtree, there are only 15 days till the big race. This will be my 18th consecutive year running this 6.2 mile run.

I was thinking about compliance the other day and realized that I've done my therapy virtually everyday for the last 20 years (since I graduated from college). That's 7,300 days. I put Cal Ripken to shame.

Work is good. When I came to DiversiTech in 1997, we had never had sales of $1 million in a day. Earlier this month, we broke $2 million and have averaged more than $1 million in sales each day this month. We went from a small company in Lithonia, Georgia to a run of over 5 years in the Atlanta Business Chronicle's Top 100 Private Companies in Atlanta. I'm proud to say I played a role in that.

The kids are doing great. Avery has advanced another level in gymnastics and is at gymnastics camp in Tennessee. The overnight camp thing is a bit difficult for me. While many of my friends are going to camp reunions or talking about camp memories, I sadly don't have any. I couldn't go to overnight camp due to my cystic fibrosis. It's one of my biggest regrets. While I'm thrilled that Avery gets to take part in such a wonderful tradition, I wish I'd had those same memories that we could share.



I really miss her!

Ethan has become a sports nut. He loves soccer, baseball, football, basketball, tennis, swimming and I'm sure I've skipped some. I caught the kid watching the WNBA the other day. I think we have the next Bob Costas in our house.



The "E" in Ethan stands for ESPN.

Andrea and I are doing well. We are thrilled with the new house. We also have a new addition...no, not that kind of new addition. Buddy the puppy joined us a few weeks ago. We rescued him from an organization whose founder's husband plays at Wish for Wendy. Small world.



He's our Buddy now!


We just started meeting on Wish for Wendy and I know it's going to be another successful year. I can't wait.

Oh and for those who loved "I Need a Nebulizer," let's just say I may have another idea up my sleeve but not for a while.

I hope that everyone is happy and healthy.

Live your dreams and love your life!

Andy

Prepared for tomorrow

I see my doctor tomorrow and will be doing my PFT's. PFT's stand for Pulmonary Function Test though I believe the acronym should stand for Pressure Filled Test. I have a feeling a lot of people who battle this disease would agree with me.

For those of you who don't have cystic fibrosis or don't know anyone with the disease, PFT's are the equivalent of taking a final exam that means a high percentage of your final grade. In other words, my blood pressure may be good, my weight may be fine and my lungs may sound clear but it's the pulmonary function test that usually determines a good appointment versus a bad one.

When doing a PFT, you have to take a deep breath and then blow as hard as you can for several seconds and then breathe back in. Each patient does this 3 to 6 times or until he or she is completely out of breath. The doctors then use these tests to determine the amount and the rate of air that you breathe in and out over a period of time.

I have prepared for this test since the day the IV's were removed from my right arm back on March 27th. I have been going to a trainer twice a week, adding another aerosol once a day on weekdays and have been gaining weight to the best of my ability. I'm doing treatments three times a day now and working out 7 days a week (sometimes twice a day). I'm even taking practice PFT's with a new portable device.

I'm working hard as I'm motivated to stay strong not only for me but for Andrea and the kids.








Who couldn't be motivated by these 3?

A few months ago, I weighed between 165 and 170 and my doctor was adamant that I gain more weight. Today I weigh between 175 and 180.

The test has me on edge this week but tomorrow I'll put on my game face and show the doctors at the clinic that over the last few months I've been making CF stand for Can Fight.

Regardless of how my appointment goes, I know one thing for sure.

"I have cystic fibrosis but it will never have me!"

I've never been more sure of that.

Thanks for reading.

Andy

Update: Andy's PFT results were a 78 which was 6 points higher than last time. No IV's! Great news!

One Heck of a March!

The journey on IV therapy officially began the morning of Wednesday February 26th when my PICC line was inserted at Emory hospital.



Over the last 4 weeks, I tried to make CF stand for Can Fight!

Whether you've had IV antibiotics one time or fifty times, it's always scary when they tell you your numbers have gone down while you're supposed to be on the drugs that should help you. That's the news I received from my doctors two weeks after I received my PICC line. Instead of getting the PICC line out that day, I was on more drugs and faced a potential hospitalization if my blood work continued to worsen. The drugs had done some damage to my kidneys and my weight had gotten down into the mid-160's. I'm normally around 175. I refused to go to the hospital though. I asked that they take blood again and see if my numbers were a bit better after going off the drug that was negatively affecting my kidneys. If the blood work was still bad, I was okay with being hospitalized. I received a call that evening that my blood work was indeed better since going off the drug and I also had a CT scan to see how my lungs and heart looked. There was a bit of mucous here or there but nothing they wouldn't otherwise expect from a CF patient. I was cleared to continue home IVs but I was definitely frustrated with the PFT results.

As I sit here, I can tell you the most difficult part of being having a PICC line in was watching Andrea do so much not only for me but for the entire family. She was wrapping my arm before showers, mixing my meds, taking the kids places and taking on the role of pseudo-nurse. It was also difficult not being able to carry my kids up the stairs and throw them into bed like I had in the past. Over the 4 weeks on IV's, I'd spiked a fever, been to the ER twice, and had several reactions to medication. It was a tough 4 weeks but there are many CF patients that go through far worse so who am I to complain.



Nurse of the month for March 2014 (the one on the right)

I'm happy to say that a month after the PICC line was inserted, I was finally able to have it removed last Thursday. My PFTs were up from a few weeks prior though still about 7% from my baseline. I did another week of the inhaled Coliston (an inhaled antibiotic) and started a 28-day supply of TOBI (another inhaled antibiotic) yesterday.



Goodbye PICC line!

I had my first personal training session since I had my PICC line removed on Tuesday and considering much of my stamina was not there, I think I did really well. I was walking up and down 10 sets of stairs with 12.5 pound weights in my hands. I was jumping rope again. I was doing everything possible to get stronger. My arm was still a bit sore. As you can see from the picture, it's still not the prettiest thing in the world.



Red is my color.

Over the last month, I've done over 10,000 minutes of treatments and I can tell that my body is tired. I played softball on Monday and did okay. It wasn't my best performance but I knocked in a run and played half the game. Slowly my stamina is coming back.


The last month has been difficult but seeing Avery smile on the medal stand at gymnastics and Ethan shine on the baseball field did a lot for my mental health. I have a pretty good tennis player for a wife too! I'm so proud of all of them.



That's my A!



I knew E would play for the Braves one day.

As we speak, I'm continuing to work out daily and my weight has increased nearly 10 pounds. Just because I'm off IV treatments, it doesn't mean I can take it easy. CF doesn't take any vacation days so I can't afford to either.

On an exciting note, I just got asked to be a speaker at Terry Third Thursdays which is the monthly speaker for the University of Georgia's business school. I will be the speaker for July. Previous speakers have included Jon Schuerholz of the Braves, Bernie Marcus who co-founded Home Depot and Rich McKay of the Falcons. It's truly an honor.

In closing, I want to thank all of you who reached out to me and Andrea and supported us through the last month. I didn't realize how many good people we had in our lives and I feel blessed that there are so many of you. We are here for you as well if you need us.

Thank you for your efforts and your prayers,

Andy

2 long weeks

Wednesday, February 26th, I got my PICC line in but the day prior is when the drama began. I started on an oral antibiotic which was honestly the least of my worries because I'd taken it before. Five minutes after taking it, I started to itch everywhere and the taste of the food in my mouth changed. I knew immediately I was having a reaction. Andrea saw white bumps all over my body. She immediately gave me Benadryl and I drove to the hospital. Someone needed to stay with the kids and I knew I was strong enough to make it. The doctors at St. Joseph's agreed that I'd had a bad reaction to the antibiotic and if I took the drug again it could be life-threatening.

I got home close to midnight thinking this was not the start of the 23 day cycle I wanted. I call it a 23 day cycle because I figure to be on oral antibiotics for 14 days, IV antibiotics for 15 days and TOBI for the final 7 days while on IVs plus another 8 days after that.

I got to the hospital at 9am Wednesday morning and the IV surgical insertion went very well. Of course when I got home my arm started getting itchy and before I knew it my arm looked like one big rash. My second nurse realized it was a reaction to Iodine that they'd used to insert the PICC line. I was also having numbness on my lips which was a reaction to one of the drugs. The numbness has all but subsided as they slowed down the speed of one of the drugs. The nurse cleaned off most of the Iodine so the itchiness is still there but not nearly as potent. Notice I mentioned the second nurse. My first nurse was a nightmare. First he smelled like smoke. Secondly, he was coughing the entire time. Third, and thank God Andrea noticed, he mixed my drugs incorrectly. Even worse, he told Andrea it shouldn't make that much of a difference. When I spoke to the pharmacy, I told them I wanted my nurse changed and they immediately made the change.

Last Thursday evening my forearm had swelled to over 13". Just so you understand how big that is, my left forearm is only 10". So at 1am on Friday we were back at the emergency room. The doctor and Andrea were concerned about a blood clot. Fortunately after several tests, everything was ok. I had to keep my arm over my heart 3 times a day and ice it each time for at least 20 minutes. My arm is slowly looking like "my arm" again.

As I write you, I'm on Day 16 of this crazy ride (day 15 with the IVs). Yesterday I had to stop the IV meds because my kidney function was too high and so I had to flush my body with saline for 7 hours over the last 2 days. There are moments that I get a little down and even a bit stir crazy. I've had to cancel my personal training sessions for now as I just can't afford to sweat too much with the IV in. In fact, since the blood tests revealed some kidney issues, I've had to stopped working out until my appointment. Andrea pointed out that is only ONE day. I told her for a terrific athlete like myself that's a lot. She laughed and kept laughing. "Hey, it wasn't that funny!"



Making IV stand for I'm Victorious!

I am still working out for 30 minutes a day on my own (until today)and walk the dog around the cul-de-sac at least once a day including 2.5 miles yesterday prior to getting my blood test results back. Magic has been great. She lays by my side a lot. I got through half of season 2 on "Breaking Bad" but I stopped watching it as I think seeing someone with a lung disease made it a little difficult to watch. I didn't know he had that issue till I started watching.

Andrea has been an amazing nurse. She mixes a few of my drugs every night and stays ultra-positive throughout. I try to stay positive and not let the kids see all of the vulnerability I have. I have made each of Ethan's baseball practices and games and both of their parent-teacher conferences. Still with my medication schedule, I've had to cancel several things on my calendar.

Here is my current schedule:

Time start varies: Work out (30 minutes)
Time start varies: Vest Therapy with Pulmozyme and Hypertonic Saline (Time: 40 minutes)
Time start varies: Clean Nebulizers, take Levaquin (oral antibiotic) and do inhaled antibiotic TOBI (20 minutes)
7:00AM - first IV drug (60 minutes)
8:00AM - second drug (90 minutes)
Time start varies: Walk Magic (20 minutes)
3:00PM - Second dosage of first drug (60 minutes)
8:00PM - Second dosage of second drug (90 minutes)
11:00PM - Third dosage of first drug (60 minutes)

I also take another oral antibiotic Azithromycin 3 times a week not to mention another 30 or so pills for digestion per day.

Honestly it's a bit overwhelming at times but I'm handling it. One thing I am taking from all of this is all the looks of awe when these nurses and doctors find out I have cystic fibrosis. I think they're in shock...and I don't think it's just to make me feel better. Of course, it does just that.

Tomorrow will be nerve-wracking. In a way, I want to see the doctor so he can pull my line but I also am worried he'll say nothing has changed or worse, I'm getting far worse. I just can't tell though you'd think I could. I can definitely tell that the drugs have affected my balance, my strength and my ability to function but I hope they've also done a number on my lungs.

Thanks to all of you for your kind notes. You don't know how much it means to hear "You got this" or "Go Andy!" Those of you who have brought meals or just taken the kids for us are much appreciated.

I hope to have the IV out tomorrow so I can pick my kids up again, hug Andrea tight and grab a softball bat and take vengeance against all the pitchers in my league. But if things don't work out, I'll still do those things...I'll just have to wait a little longer.

Best Wishes and good health to everyone,

Andy