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tag:blogger.com,1999:blog-59645478362483185022018-08-13T15:19:59.356-07:00I have CF, but it will never have me!This is a blog that Andy has written to describe his battle with cystic fibrosis. Andy is 40 years old and is married to his beautiful bride Andrea and has two miracle children, Avery and Ethan. Andy appreciates each day and hopes to show the doubters that in his world CF stands for Can Fight!Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-40352585862515223522015-11-13T17:03:00.002-08:002015-11-17T06:31:50.844-08:00Friday the 13th: From Nightmare to Gratitude: My Mental Illness StoryI consider myself a strong person and not only because I have fought cystic fibrosis since the day that I was born. Don't get me wrong. Cystic fibrosis is a devastating disease. It is not, however; the only disease that I face on a given day. Like one in four American adults in a given year, I fight mental illness. When most people think of someone having to fight a disease, physical diseases like cancer, heart disease or diabetes probably enter their minds. In my opinion, the struggle against mental illness requires just as much strength to survive as any physical disease. In many instances, suffering from mental illness coincides with battling a physical disease. My emotional enemies are high anxiety and clinical depression. These feelings don't just arise when times are at their worst. Take what happened to me a few weeks ago as an example.

The disease that is often forgotten

I was at Alpharetta's North Park. Wish for Wendy, the event my family and I started to fight cystic fibrosis, raised nearly $600K, a record-breaking fundraising performance. People expected me to do cartwheels and celebrate like I'd just won the seventh game of the World Series, but it's when those final numbers are announced and the day turns to night, my feelings turn to something a bit unexpected. At least it's unexpected to those around me. To a person who is well aware of the fight with depression and anxiety, this is just another day dealing with the struggle.

As the event was ending and friends and family who I'd seen and talked to throughout the day began departing, my thoughts turned to despair. It occurred to me that the next few months would be cold and dark due to the time change. Late fall and winter have never been my favorite seasons. Late fall is when I went to Ridgeview, a mental institution, 6 years ago. Winter is when my CF takes an ugly turn and usually requires IV's.

My family at this year's Wish for Wendy

That Saturday evening, I found myself walking up to the vacant auction room as the rest of the attendees settled down to watch the semifinals and finals of our tournament. That night should have been a time to celebrate but thanks to anxiety and depression, it was a night to cope with my issues. It was a night to quietly sit there for five to ten minutes and calm myself by repeating the serenity prayer and meditating. Nights like these are agonizing for those of us who fight mental illness and I'm pretty sure it's even more so for those that love us. These are what I call my "moments of darkness."

These moments are horrible. I'll be sitting alone contemplating death. I'm not considering suicide rather I'm thinking what death must be like. The lights and television are usually off. It's the middle of the day. I feel like I can't breathe and for once it's not CF-related. All I think about is my life ending and living in complete darkness for the rest of eternity. As my pulse races, I begin to sweat. These "moments" rarely if ever occur in the spring, summer or early fall. They occur frequently as the days grow shorter from November to February.

My goal in this blog post is to show my readers what it feels like to battle anxiety and depression. I think most people think of anxiety as a quick moment where you're worried about getting a test back and depression is just being sad about something. That's part of it but not nearly all of it.

I believe some of my anxiety stems from growing up with cystic fibrosis. My life has been measured by tests since I was a little kid. None of them determining A' or B's on a report card. Each one instead determining the next step in my care.

I am open about my mental health issues. I see a psychiatrist bi-annually, a therapist three to four times a year and practice meditation when it's needed. I am not ashamed of my emotional situation. As someone who deals with physical illness as well, I honestly don't see much of a difference admitting I have depression versus saying I have cystic fibrosis. I believe that being transparent encourages others to ask questions, gain knowledge and perhaps gain insight into what it's like to suffer from mental health issues.

I'm open about my mental illness because hiding it only brought me more issues.

How does one know he or she has a problem with depression and/or anxiety? Read the question below and choose your answer. I'll then explain what my answer is and how it reveals my issues with mental illness.

Question: In the next week, you can have the following happen:

A. You have the best week of your life. Absolutely nothing goes wrong.
B. Nothing exciting happens. Things remain status quo.

My guess is that most "normal" people would choose "A." That would have been my choice for the longest time, however; that is no longer an option for me.

When I was diagnosed with clinical depression and high anxiety, I learned that the only way I could survive on this earth is to live as even keel as possible and therefore I cannot choose "A." While nothing bad may happen to me for an entire week, things can only go down from there hence why my only choice would have to be "B." For me, going through highs and lows is very unhealthy. It was when people put me on a pedestal and lauded at my achievements that I had the tendency to feel invincible and arrogant. I could do no wrong. Addicts can't live in those circumstances.

I am an addict.

My sobriety date is November 13, 2009. Today in fact is my six-year sobriety anniversary. It's a time to give thanks but not to get wrapped up in celebration.

It was a Friday the 13th that I first stepped foot in the Ridgeview Mental Institution. Sobriety is not just about drugs and alcohol. It can be about almost anything. If there's something that constantly nags at you and pushes you to live an unhealthy lifestyle; that is an addiction.

When I was an outpatient at Ridgeview, I witnessed all sorts of additions: drugs, alcohol, self-mutilation, etc. I learned some things about myself too that I probably would not have learned otherwise. I have an inner-arrogance about me that is very dangerous. When good things happen to me, they build into great things in my mind. While most would probably not be too concerned with that, please understand that the opposite happens as well. When bad things happen to me, they turn into extremely horrible things in my mind. I would go from being an egocentric maniac to believing I was the lowest form of scum on earth in a matter of seconds. I would go from feeling invincible to feeling as if I was the poster boy for Murphy's Law. As my therapist explained it, I lived in extremes. I went years not being able to cope.

To me, the definition of anxiety and depression is not feeling nervous nor is it feeling sad. Experiencing these two sensations is like feeling everything at all times. When things are good, the problems tend to mask themselves but when things are bad, the problems are as visible as a huge monster cornering me in a small room.

Now let's revisit a topic I mentioned earlier. Does cystic fibrosis cause my anxiety and depression? I can't know for sure but I know it has not been a factor in fixing it. Having to remember pills and being able to deal with bad doctor's appointments were things I had to deal with growing up. Notice I said "deal with" rather than "cope with." Imagine having a disease in which your life expectancy was that of a teenager. Imagine having to get your care done at a children's hospital because for the longest time adult clinics did not exist due to lack of need because patients generally did not live to see adulthood. Imagine a disease which requires administering hours of treatments and taking copious amounts of pills just to attempt to avoid regular hospitalizations. For most, including myself, it's a devastating feeling to deal with 365 days a year.

The reason for my anxiety and depression?

Over the years, I've developed a skillset to help me cope with depression and anxiety. For one, I repeat the serenity prayer during the worst of times but also when things could not be better. I've learned to call my sponsor if I encounter a situation in which my sobriety could be at risk. Finally, I've learned that I'll never be a "recovering" addict because my issues with depression and anxiety will never go away. I can cope with them now but I will never say that my problems are behind me. They are constantly with me and to ignore that is forgetting everything I learned from my days at Ridgeview.

Thank you for reading and if you do feel like you have an issue with depression, anxiety or any form of mental illness, seek professional help. Getting assistance for emotional issues doesn't mean you're weak.

On the contrary, it demonstrates your strength.

Live your dreams and love your life.

Andy

Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-62659763159711373202015-09-12T17:28:00.001-07:002015-09-12T17:28:32.536-07:00Bad newsYou know when people tell you do you want the good news or the bad news? We all know that the bad news must really suck. I've learned my lifetime when it comes to that is that I always want to hear the bad news first and then in my mind sort of as a filter I want to turn it into good news.Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-6032156531299967512015-08-31T11:17:00.001-07:002015-08-31T18:26:06.528-07:00The Braves Way needs to hit the Highway
John C. Malone

Chairman

Liberty Media

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Dear Mr. Malone,<o:p></o:p>

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My name is Andy Lipman. I'm 41 years old from Atlanta, Georgia. I was born in Atlanta in 1973 but my Atlanta sports allegiance did not begin until 1982.

Let's flash back to that season. That was the year the Braves started the season at 13-0, a Major-League record to start a season. For most, that spring was mostly about wins and losses. Not for me though.

That 13 game winning streak meant a heck of a lot more to me than just baseball. It was around that time I learned my life expectancy was 25 years due to the fact that I was born with cystic fibrosis. My father got me into America's pastime that spring. I needed the Braves then a lot more than they needed me.

Those 13 straight wins kept me playing baseball and therefore improved my lung capacity. Baseball is a part of the reason I'm 42 this Friday and still thriving with this disease. Like I said, I needed baseball, specifically the Braves, back then a lot more than they needed me.<o:p></o:p>

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Let's turn to present day. The Braves have one of the worst teams in baseball, attendance is dwindling and fan support is at a low I haven't seen since the team moved to Turner Field.

There's a disconnect between the Braves and its fans. Just as an example, I went to the Yankees game yesterday as I am a season ticket holder and I was embarrassed to tell my 7 year old that we are still considered the home team despite the fact that 60% of the stadium wore Yankee pinstripes. <o:p></o:p>

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Mr. Malone, all I keep hearing about is "The Braves Way." I get the marketing strategy to get younger in order to succeed. Heck, I predicted it going into the offseason. I understood the Heyward trade though it pains me to realize that you're essentially saying we couldn't afford him when he becomes a free agent. I understood the Justin Upton trade though once again I'm miffed that you're saying we can't afford him. I understood the Gattis trade because the guy couldn't be a solid catcher. I even understood trading Kimbrel BUT only because you were starting over and you were able to get rid of Melvin Upton. <o:p></o:p>

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Here's what I don't understand. When did the Atlanta Braves become a small market franchise? When did "The Braves Way" become putting the brand over the team? When did ownership stop caring about the everyday fan?

When Ted Turner was at the helm, he either got the big named free agents or at least had the Braves as one of the teams that was in talks with the high-priced guys. I looked at ESPN after last season and the Braves were not listed as favorites for any of the best players in free agency.

Here are some other things I don't understand. Why do we still have Fredi Gonzalez? He's a terrible strategist and knows very little about sabermetrics which is a key metric to winning in present day baseball. I also don't understand why we drafted about 50 pitchers in this year's draft when hitting is our biggest weakness. You may say we'll trade that young pitching for hitters but we haven't exactly brought in any great hitters into our minor league system lately. We then took money we weren't spending on guys like Heyward or Upton and signed an outfielder to a long-term deal who was past his prime and about to go under the knife. Markakis had a decent year but he can't hit for power anymore and his better days are far behind him.

We were told "The Braves Way" meant getting younger but we followed up trading some of our mid-20 stars by signing an aging catcher, several past-their-prime outfielders and a couple of scrap heap relief pitchers.

I didn't expect to trade our number one minor league prospect, a good young pitcher and a few other players for a couple of scrubs and a 30-year old player with an injury history who is still NOT considered ready for the big leagues. That doesn't sound like "The Braves Way." I think Olivera will be our modern day Brad Komminsk. If you don't know about Komminsk, he was supposed to be the next Dale Murphy. He wasn't even as good as Eddie Murphy.<o:p></o:p>

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Mr. Malone, I have never met you and never heard a word from you about the team that has given me and millions of people around the country reasons to turn on the television or walk through the gates of Turner Field. I want to hear from you or John Coppolella or John Hart or Jon Schuerholz or anyone with the name "John" who is a Braves employee as to why we are basically tanking when kids like mine want to root so badly for this team.

We are being insulted as fans that the big deal surrounding this team is a new stadium. We don't care. I don't go to Braves games for the "fan experience." I go to see a competitive team that will play its heart out for our city and I believe that most season-ticket holders will agree with me.<o:p></o:p>

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Somewhere there is a kid like me who needs another "13-game winning streak" to keep his self-esteem going during a difficult time. Somewhere a young Braves fan needs a run like in 1991 for some extra motivation to get him through a tumultuous time. Somewhere there is a kid who needs a CHAMPIONSHIP reminiscent of 1995 so that he doesn't have to focus on all of the medical treatments he has ahead.

Thirty-three years ago I needed our Braves to get through my treatment-filled days. Today I believe that they need me and millions of others to stand by them and bring back the success that our fans deserve.

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Thank you for your time. Please come to Turner Field sometime and witness firsthand the amount of empty seats and the number of fans wearing the visiting team's jerseys. It might be an eye-opening experience for you.

Please help us bring back a professional baseball franchise to Atlanta. If you can't bring this kind of competitive unit to this city, I beg you to sell this team to someone locally who can.

I realize you need some type of stock in return but please consider the working man who spends a good percentage of his salary to attend games. Please consider the lifelong fans who have been watching games since before you were even born. And of course, please think about the kids who are learning baseball for the first time and need a local team to root for. Those are your future season-ticket holders.

They are a lot more important than a few pieces of paper to someone like yourself who honestly doesn't need the money.

It's time to scrap "The Braves Way" and change it to "The Atlanta Way."

We are all in this together.

Sincerely,

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Andy C. Lipman<o:p></o:p>

Atlanta native & a Braves fan forever

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Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-46187745599480481392015-08-25T09:35:00.001-07:002015-08-25T12:33:12.763-07:00It was just...time

Andrea's good friend Juan, who doubled as her tennis coach, asked me from time to time in his easygoing Argentinian accent, "When am I going to see you back on the court?" I had told Juan that I used to play but I just didn't have time anymore.

My son often asked me what sports I played as a kid. "I played baseball, basketball, soccer and some tennis," I always reply. Tennis was always last on my list. It's the sport I wanted to forget. Why? I couldn't even figure it out until recently.

For years, I played competitive tennis as a junior. I was never ranked in the top 50 nor did I ever win a singles tournament. I'm just saying not to compare me to Roger Federer.

I was 18-0 in high school doubles but I was never one of the top players on a highly rated high school team. Still I loved the game and for the most part it loved me back. The constant moving back and forth caused me to release my mucus and therefore kept my lungs in decent shape. As the years went on, I won a round-robin tournament, made it to the finals of a ranked tournament (in which I knocked off the top seeded player in the semifinals) and began taking lessons several times a week. I even gave lessons to young kids over the summers.

The problem became when I won, it was more a relief than a thrill. When I lost, I thought about it for weeks and months and criticized myself for hours everyday. I would throw my racket all over the court and scream when I lost points. When I came home, my dad would ask how I did and it would pain me to tell him when I lost. When I won, I just said "I won. Going to my room now."

After my high school days, I decided not to try out for the UGA tennis team. I used to play the team's racket stringer several times a week and won a few more times than I lost. I knew with that record I was never going to be able to compete on a top ranked NCAA team.

I stop playing tennis my freshman year and only played off and on for the next decade. I played on a club team in the early 2000's and got so frustrated after being eliminated from two straight playoff matches that I had an emotional breakdown in my car while my wife tried to console me. Tennis, while keeping me physically healthy, was emotionally killing me.

Slowly I went from playing on club teams to being able to count on one hand how many times I played per year. Finally, four years ago, I just stop playing. My rackets went from being stored in the house to the garage to eventually the back of the storage room in the basement.

Why was it so hard for me to go back to the storage room, grab my racket and ask someone to play? Then it dawned on me, I realized what tennis was for me.

Tennis revealed my issues with depression and anxiety. The losses were horrible and the wins were acceptable. Tennis may have loved me but in truth I hated tennis. It brought out the worst in me. It triggered my depression.

I learned to cope with all the things that brought out my anxiety and depression. Well, except for tennis. That didn't become clear to me until last fall. Andrea was told that Juan passed away. She was shocked as were all of the tennis players at our facility.

As several hundred people stood on the courts remember Juan, I stood on a tennis court once again with sadness. This time it wasn't about me about it but about a person we had lost way too early.

Juan always asked me to get back on the court. I always refused, claiming that I just didn't have enough time.

But in fact, there was no better time than now.

When we returned from the funeral, I threw my racket case in the car along with my tennis shoes. I didn't immediately go back to playing but I realized I was done refusing the game.

Today I'm taking lessons once a week and I have partners that I play with here or there. I even joined a competitive team. My game is totally different now. Back in my heyday, I was known for lobbying and just keeping the ball in. Now due to my increased workouts, I am hitting the ball a lot harder and with more overspend. I have a completely different game. But the most important thing is that I have a completely different attitude.

Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-33718566875813546032015-08-18T14:49:00.001-07:002015-08-20T14:18:32.754-07:00My Titanic
I don't shy away from being open and honest about my mental issues. In fact, I often discuss my issues with depression and anxiety. Recently, I've been confronting another emotional stressor, that of envy.

I feel as if I'm trapped on the Titanic. Half of the ship is being rescued while my half wonders if we are doomed. In this case, people aren't being rescued based on wealth or social status, rather their survival depends on their genotype.

I feel like I'm never going to get off this boat.

Over the last 12 to 18 months, two major pharmaceutical breakthroughs have helped more than 50% of the CF population improve their lung function. The new drugs, Kalydeco and Orkambi, are not effective for the type of CF I have.

While people like me are happy for those who are being treated, we are disappointed that we are not candidates for either of these drugs. Knowing this makes me feel as if I'm trapped with that disappointed CF population on a sinking ship. Emotionally it seems so unfair to read discussions on social networks like Facebook dedicated to talking about how patients' lives are so much better after taking these miracle drugs. I feel so selfish for revealing my envy.

It haunts me that my "breakthrough drug" may never exist.

I'm not fighting any less to beat this disease. I spend most hours of the day and night doing treatments, running, working out and doing whatever it takes to stay strong with cystic fibrosis. Yet, there is a part of me that is envious of those who take these new drugs and get to feel so much better. I'm sure that one day my genotype will have a breakthrough treatment. I know there are several companies working on one,and the previous FDA approvals only add momentum for future successes. Still, it is difficult to wait and wonder.

Neither new drug is a cure, but then not all rescue boats are guaranteed to reach the mainland safely. Still, like the drugs, they offer hope. I worry that by the time the right drug is available for me, my ship will have already sailed or worse, sunk.

Still, this wouldn't be a post from me without a positive spin. I may have already received my first "miracle" drug 9 1/2 years ago, and then another 2 1/2 years later. I'm referring to the birth of my children.

Avery and Ethan have changed my life. My health is no longer just about me. It's about them too. I want to keep getting stronger so that I can see all of the milestones in their lives. They have changed my life more than any pill could. I think that perhaps each of us has received a miracle drug some time in our lives but might not have recognized it as such because it wasn't something we had to swallow or inhale.

These miracle "drugs" got me to 40!

And they will get me even further.

We each need to find our miracle treatment. It may just be looking us right in the face.

In my case, that couldn't be more true.

Live your dreams & love your life.

Andy
Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-1497426064870731862015-08-11T10:21:00.000-07:002015-08-12T08:44:00.358-07:00 Life & Death

Ever heard the old expression, "Life is an open book"? Like a book, life has a beginning, a middle and an end.

Sadly, a lot of people focus on how the story ends rather than enjoying the development of the characters, the vivid descriptions, or plot line progressions of the story itself.

Just a few years ago, I was strapped to an IV pole, struggling with pain all over and enduring a terrible smoker's cough though I'd never even taken one puff of a cigarette in my lifetime. Just another miserable day fighting cystic fibrosis.

During that episode, I lived in a constant state of fear. I wasn't worried about how I was going to live my day rather I focused all of my energies on how I could outsmart death. What I didn't realize then was that I should have concerned myself more with the former than the latter.

Why is it so important to worry less about dying than worry more about living? I guess in short, everyone dies but not everyone lives. Yes, we all technically live because each of us breathes but I believe the true definition of living should not just be to inhale and exhale oxygen 24 hours a day. Living, to me, is attempting something that scares you. Living is going somewhere that is outside of your comfort zone. Living is accomplishing feats that are considered improbable.

My definition of living probably varies from many of you. I have lived with an enormous chip on my shoulder since I learned of the mortality rate that came with having this incurable genetic disease.

Living with cystic fibrosis provides me with a tremendous opportunity to view life more appreciatively. We each live only once so really it doesn't matter what ends our tour on this earth. What matters is how much we appreciate our days while we are here.

Does this mean that I am grateful every moment that I spend on this planet? Heck no! There are days when I wonder "Why me?" There are mornings that I wake up on the wrong side of the bed. There are occurrences that cause me to question life's fairness. These moments, however, are brief compared to the times that I relish experiencing another day as a part of our beautiful world.

Too many times I hear people complain about the "small stuff." Why is traffic so slow today? Why is there nothing good on television? Why does it continue to rain?

Perhaps it's perspective.

With traffic being so slow, I have more time for self-analysis or to listen to my favorite CD.

If there's nothing on TV, I can take that time to enjoy my family or take a much-needed nap.

If it continues to rain, I can work on a project that I've been pushing aside for months. I can call someone I haven't talked to in weeks or perhaps months or even years.

Life isn't about dying. If it was, we'd all be the same. It's about living and therefore we are all different. We each have the choice to make the most of every moment. If we don't, there is no one else to blame but ourselves.

The final chapter of your story shouldn't be the best one. Don't just skip to the last page; that's not where life happens. Enjoy your entire story. Make it the best book ever written.

As always, Andy

Live your dreams & love your life

Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-57899443027136580402015-05-20T08:04:00.003-07:002015-05-20T08:05:35.020-07:00ChangesSo it's been a crazy few weeks for me and my family.

My company was officially sold today and therefore I am bidding farewell and focusing more on health, family and a passion project (that I'm still figuring out). The company was in the process of being sold for some time so leaving DiversiTech was not an overnight decision for me. It was great to sell the company and have a lot of people prosper from the sale. It was also a relief to sell to a company that was going to keep most of our organization in tact.

Leaving my job is difficult. I've already informed my co-workers and suppliers. I even informed my personal trainer that my days at the fitness center are numbered as it is too far from my house. She looked as sad as I look each time she tells me to do 20 burpies.

If anyone wants to reach me, you can still do so at firstname.lastname@example.com or email@example.com.

I want to continue speaking as a profession. I'm already in touch with a few people as to how to take my speaking to new levels. I remember the final episode of Mary Tyler Moore when Mary and her co-workers are extremely emotional as they leave for the final time. I think I'll leave with those same feelings. The last thing I'll take from my office is the name tag that has stuck to my door for the last 18 years.

Mary, I get it.

CF patients rarely have the strength nor the employer support to be able to keep a full-time job. I've been fortunate to have an understanding team and the ability to work at my company for nearly 18 years. I'm going to miss DiversiTech. When I arrived, we weren't a very big company but as I leave we have been a Top 100 private company in Atlanta for more than 5 years running. Doing treatments prior to work, at lunch and as I departed each day just became too much for me to handle. My last day will be this Friday May 22nd.

In other news, the FDA Advisory Council recommended approval for another great CF drug Orkambi from Vertex Pharmaceuticals. It doesn't yet affect my genotype but we are headed in the right direction as it affects 50% of CF patients. There are lots of cool studies going on. Too many to mention here but we seem to be getting ever-closer to a cure for this dreaded disease.

More great news for the CF Community

The girls' softball team I coached made it all the way to the finals. I was so proud of my Ducks specifically number 9 on my team. That's Avery. She came in with no softball experience and a fear of the ball. She leaves as a top outfielder and a 5-for-5 hitting performance between the semifinal and championship game.

Quack! Quack!

My son made the All-Star team. I'm so excited for Ethan. We've been spending everyday lately at the fields. In fact, Saturday I had the wrong time and we arrived 2 hours early and we ended up warming up for half that time. The kid can't get enough of baseball. Or basketball. Or football. I wonder how he became a sports junkie. Yeah, I know.

Play ball!

Andrea is doing great. She's been very supportive during this period of change. She has done an amazing job orchestrating a new home project. A pool!!! It should be ready before the summer. We can't wait!

It's coming along swimmingly.

I'm dealing with some anxiety wondering how my life will change with so many things up in the air, but over the years I've learned how to cope with these sorts of changes. Overall, this is a very positive change. I guess part of me feels like having a fulltime job was another way I was beating cystic fibrosis. I felt that same defiance by having children, being able to exercise daily and by living past my 40th birthday. I will find other ways to defy it though.

My change in lifestyle won't affect my goal to raise awareness for cystic fibrosis.

Just a few more days till I bid farewell to one stage of my life...

or should I say just a few more days until I begin a new one.

Live your dreams and love your life.

Andy

Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-79246144814992815482015-04-01T08:50:00.000-07:002015-04-01T10:52:00.593-07:00Howard at 39

Today would have been Howard Lipman's 39th birthday. He was my best friend growing up. He was the one I could tell all of my secrets to. When I was dealing with major coughing attacks, he was the one who didn't ask if I should go to the doctor or show constant worry on his face. He just sat by my side and listened to my concerns. He was the one who made me laugh when laughing didn't seem possible. He gave me hope when hope seemed lost. He relieved my fears when I had every right to be scared to death. I loved him and he loved me.

Howard was a crazy guy. He used to drive the girls wild. He was extremely affectionate, but he could be tough too. He once stood up for me when a bully attacked me. Still Howard got in a lot of trouble and I know there are times when my parents wanted to ship him to Antarctica. I'm glad that they never did because Howard...

saved my life.

In the 15 years I knew Howard Lipman he didn't speak one word yet his constant listening spoke volumes. Howard believed in me when the Vegas odds would have called me a longshot. Howard was there when I read the encyclopedia article that told me I would not see 25. Sadly the truth is that my life expectancy was always greater than his but he showed me that living in the moment was all that mattered. Howard was there when I got my first therapy machine. Though he was scared at first, he still sat with me as I turned on that noisy metallic monster. He never saw me as the kid with cystic fibrosis. He saw me as his best friend.

Howard died 23.5 years ago.

The fact that Howard was a dog does not lessen his loss one bit. I never saw him as "just" a dog. I saw him as a brother. I saw him as a great friend. A best friend. And I will celebrate his memory every April 1st until the day I pass.

Howard wasn't just a dog.

We got Buddy last summer. The primary reason I wanted a young dog was for our other dog Magic to have a playmate. What I didn't realize is that we'd found a crazy, mischievous dog who licks everybody who gets close to him. I always wanted my kids to meet Howard. Seems like they're getting that chance with Buddy. As much as I want to beg him to stay out of trouble some days, I look into those doe-like brown eyes and I see that brown crazy mutt who wrecklessly ran into my life 39 years ago...more like ran into my heart. I see my best friend. I want my kids to experience that same unconditional love.

The moment my kids first held Buddy they began to feel a love I'd never thought they'd get to experience.

Now they're experiencing it.

Glad "Howard" is back...

though I still miss the original.

Love you Howard.

YOUR BEST FRIENDAndy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-84621041241930952362015-02-10T08:58:00.001-08:002015-02-10T09:14:05.548-08:00What's the point?So I was thinking about something the other day.

What's the point of doing my best when I'll probably die from this disease anyway?

What's the point of spending every moment of my life dealing with an incurable beast?

What's the point of having dreams when they seem so unattainable?

Some people would say "Well that's a defeatist attitude!" Until you have a terminal disease like cystic fibrosis, it's difficult to judge a person for that opinion. These were the questions that filled my head throughout my early college days.

I have a doctor's appointment this Thursday and I don't know how it is going to do. I work my tail off each day to fend off the effects of cystic fibrosis but honestly during some of the more exhausting days of working out combined with the trials of having CF, that question still pops into my head a time or two.

It's taken me a long time but I do understand now "What's the point?".

The point is that there are no dress rehearsals in life. You're dealt a hand and those are the cards you have to work with. You could give up and die. That's your prerogative but you're not getting a second chance.

I look at cystic fibrosis as an opportunity to do something great. I look at it as an opportunity to build a legacy. I look at it as a way to create hope for others.

My parents were told I wouldn't see my teens. When I was 8 years old, I read that I wouldn't see 25. Most of my life I've been chasing the median life expectancy. Now it's chasing me. I prefer to live my life like anyone else. I have dreams. Heck, beating CF is a dream in itself. I'm not adjusting any of these fantasies because of cystic fibrosis. Yes, the path to achieve them may take longer and that path may involve some obstacles and U-turns but it's not going to change my motivation to get there. My wife and I had to go through IVF to have children, but fortunately it worked out and we have two beautiful kids. Not the ideal way to have kids but it worked. Dream accomplished. I wanted to run the Peachtree Road Race. When I train, there are times that I have to stop and spit and catch my breath. I've run it 18 consecutive years. Dream accomplished. I wanted to go to college. I had to understand compliance with my meds, deal with my depression and learn from emotional and academic failure. I graduated college in 5 years. Dream accomplished. Not the ideal route for any of these things but the end result was all that mattered...although each journey taught me a lot.

When I was a kid, I was scrawny and sickly - the ideal picture of cystic fibrosis.

As I got older, I realized that the ideal picture could change.

"What's the point?" The point is anyone can die but not everyone can live. I want to live. I have a dream that my tombstone one days says "Andy died from natural causes." BUT even if I do die from cystic fibrosis, I hope that no one says I lost the battle to cystic fibrosis because I will fight everyday to ensure that CF never beat me. By the way, I don't think anyone has ever truly lost the battle to cystic fibrosis. Each of us fights at some point at varying degrees.

We were always taught that life isn't a fairy tale but with hard work, maybe it can be.

"What's the point?"

We each have a terminal disease. It's called life. Whether I die at 45 or 95, I'm going out on my terms not the terms of the disease that has been affecting my body for more than four decades. Cystic fibrosis has given me amazing opportunities. I've gotten to run with the Olympic Torch and tell my story to tens of thousands of people. I've gotten an opportunity to help people who were void of hope. I remember the line from Spiderman. "This is my gift, my curse." That in one sentence is cystic fibrosis to me. Yes, CF is a curse because I deal with pain, hours of therapy and taking copious amounts of meds every day. It's a gift too though. It helps me to appreciate every single day which a majority of people cannot do. It gives me opportunities that other people my age will never have. It also made me focus on some things that I otherwise would not have been interested in. I got into working out because I knew it might be the only solution to save my life. Now I'm a workout fanatic. I don't think I would have had my heart set on helping a charity if I didn't deal with the struggle of fighting the disease that the charity supports. I don't think I would have developed my sense of humor if it wasn't the best defense mechanism in my arsenol. One of the reasons I was introduced to my wife was because of my story...and for that reason alone, I cannot regret having cystic fibrosis.

"What's the point?"

The point is that I'd rather spend my life living than concern myself every moment with dying. And who knows? We might just see a cure in our lifetime...and I definitely want to be in the best possible situation to take advantage of it. I just refuse to give up on that possibility.

That is the point.

Live your dreams and love your life!

Andy

Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-20135035549199850172015-01-13T08:39:00.001-08:002015-01-13T08:39:10.407-08:00Foster CareSeventeen years ago I signed up as a free agent at Atlanta Club Sport so I could meet people and play softball. This guy Tim had an opening on his team and selected me. I didn't know Tim nor did I know anyone else on the team. I was the second youngest guy on the team but liked the group that I was playing with. We went to parties together, went out after games and talked about our love lives, our jobs and whatever else we could think of. I kept one thing from all of these players, the fact that I had cystic fibrosis. I never talked much about my CF. I was embarrassed that I wore a vest every morning and took pills before every meal. I just wanted to fit in. I wanted to be a softball player. I wanted to be Andy Lipman. I didn't want to be the guy with the terminal disease.

A few months into my run with Fluffy En Fuego, one of our players, Bob Foster, told us that he needed our help...again. "Again?" I wondered. Apparently Bob ran a tournament every year called the Cigna Sports Challenge. Bob wanted volunteers for this event which featured Tug-A-War and putting for holes in one just to name a few. Bob told us it was all for a good cause...the Cystic Fibrosis Foundation. I hadn't visited the CF Foundation since I was a kid with my mom. I tried to separate myself from it. Everyone on the team volunteered and finally I relented and agreed to help out. Bob was one of those guys you wanted to support. His car tag read "BMOC" (Big Man on Campus). That's how he carried himself. He was one of those guys who you wanted to befriend. Bob and I went to the softball field early some days and played catch. He was the guy who hit a ton of balls over the fence and had this arrogant, yet funny, way about him.

I took part in the Cigna Sports Challenge as a volunteer and saw 2 young girls with CF who received a standing ovation from everyone afterwards. Bob announced that they were the reason that he did this event. Bob didn't have CF and to my knowledge he didn't have any close friends or family with the disease. Still out of the goodness of his heart, he helped put this event together over by Georgia Tech every year. That day a bell went off in my head. I wanted to run something for CF. That's where the idea of Wish for Wendy developed. Bob's influence had changed my life. To this day, I owe him for giving my life special meaning.

Our first year running Wish for Wendy was 2000 and Bob, as he promised me, put his own team in to help the cause. His Intellisales team had several of my teammates on it and I still have a note from Bob on the first Wish for Wendy poster which told me he was proud to help with this cause. Bob and I eventually went our separate ways as Bob got married and moved to Florida. I still thought about him often and looked him up to see what had happened to him. I hadn't heard anything until a few weeks ago.

I got a note from one of my old teammates Cary that Bob had Lymphoma and nothing was working. He was trying something experimental but odds were it wouldn't work. I contacted Bob's wife to check on him. She forwarded me a letter from Bob to all of his friends. The experimental procedure didn't work. Bob, as we speak, is in hospice care and probably won't be around much longer.

Bob, if you're reading this, thank you for all you did for the Cystic Fibrosis Foundation and for being a mentor for me. I will always be grateful that you took a naive 20 year old kid under your wing and showed him what being a leader is all about. You are a true inspiration and your family will always be in my prayers. It's ironic that the man who gave so much to those who had a disease that diminished their life expectancies is now the one battling a disease that will take his life way too soon.

There's aren't many Bob Foster's in the world. I'm just honored and forever indebted that I got to meet one of them. Bob, we love you guys and your legacy will last even when you're gone.

All my best,

Andy

Bob, Jennifer and their beautiful familyAndy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-71416248091552734492014-12-08T14:01:00.001-08:002014-12-08T14:01:59.361-08:00A health update & life in the world of CFHello everyone,

I hope that all of you are doing well. My pulmonary function numbers were up in November from 74% to 82% so I was thrilled about that. Some have asked what I think the reason could be. I'm using the new Afflo Vest twice a day during the week along with the Hill Rom once a day. I'm also running quite a bit more on the treadmill. I've doubled the time and distance on my runs. Other than that, I have not made a lot of drastic changes. I know that it's only a matter of time before cystic fibrosis rears its ugly head this winter. That's not me being negative. I'm just being realistic. I've enclosed my latest picture from the gym to show you how hard I've been working.

CF must stand for Can Fight (notice my hand gestures)

I've been traveling around the country quite a bit the last few months speaking to raise awareness for cystic fibrosis. I have spoken in Reno, Orlando, Kansas City and Chattanooga. I have to admit that while I enjoy spreading the message that traveling with all of my CF equipment is extremely difficult. First off, it's heavy and it's usually just me. Secondly, the security line involves an extra 15 to 20 minutes for me to explain what the heck that vest is. Third, it's stressful making sure that I don't forget any of my meds when I travel. Still, if I reach one person along the way, it's all worth it.

It's been a tough winter for me emotionally. The CF world has been filled with death including the husband of one of my friends. I didn't know him very well but I often followed his journey and knowing that his wife lost her husband and his adorable son lost his father is quite painful. It's forced me to wonder what my kids would do without me. How would they turn out? They have a great mom so I know they would be okay but I definitely want to play a role as they grow up to be young adults. All I can do is work hard and hope for a little luck along the way.

I may be on her shirt (thanks Aunt Susie) but Avery as well as her mommy and brother will always be in my heart.

While asking CF patients around the world about being in our Katy Perry video, I've come to learn that most people have trouble doing the video. The reason is generally not because they don't have enough time nor is it because they're embarrassed to show their nebulizer on camera. The reason predominantly is because they're in the hospital. That's an unfortunate part of having this disease. That's the reason why this video needs to be made and why we must find a cure. Too many people are getting sick. Too many people are in the hospital. Too many people are dying.

Fear has surrounded me my entire life thanks to cystic fibrosis. One subpar doctor's appointment when I was young meant talking about months of antibiotics and more visits to the dreaded pulmonary division of Grady Hospital, the same hospital where people were carted in after being shot. (On a strange note, Grady is the hospital that is now featured in The Walking Dead). I've noticed that those memories have kind of programmed me to be the way that I am. I live in extremes when it comes to health. My daughter comes to me to tell me about a headache the other day and in my head I'm thinking...brain tumor. My son falls and my first thought is a break, a possible surgery and a lengthy rehab. These aren't exaggerations. These are true examples of just the past few weeks of how I think the worst when it comes to health. Some people try to imagine the worst case scenario just to be prepared. I seem to think it's a reality that it's going to happen so I don't even think about any potentially good news. When I wrote "Alive at 25", I interviewed several people with CF. It was the first time I'd had any sort of contact with CF patients other than one previous encounter when I was a kid. I spoke with two fellow patients over the phone and through e-mail. Both Jason and Kathy were great athletes. Jason worked for the Charlotte Hornets at the time while Kathy played college hockey. Both told me how important exercise and sports were to succeeding with cystic fibrosis. Both were role models of mine who gave me hope that this disease was beatable. Both died several years ago from complications of cystic fibrosis.

CF is not prejudiced. It doesn't care what religion you are, what color your skin is or how old you are. It just kills anyone that it can. First, it destroys your lungs and pancreas. Then it steals your hope. Then it takes your life.

Does this mean I won't work hard because I think everything I'm doing is useless? Absolutely not. One day there will be a cure and my goal is to be ready for it and my second goal is to show those that are younger than me that they can be ready for it too. I'm not invinceable. Not even close. But I am a fighter. I am someone who doesn't quit when the going gets tough. I can't. I have too much on the line. I have a beautiful wife and two amazing kids. I won't quit on them. I can't quit on them. What kind of example can I be to my children if I just sit in bed and mope? You'll find a lot of CF patients who are like me. We can joke about bad news. We can smile when everyone around us is frightened. We all grew up a lot faster than we should have had to.

It's easy to fight a disease when you have a support system full of superheroes.

As I conclude, I don't want to give the impression that everything is negative. There have been a lot of positive things this winter, too. My Nana Rose, a survivor of the Holocaust, turned 90 last week. The same woman who lived underground and saved a little baby from her likely demise is still going strong. She is amazing! My softball team is once again in the final 4 as we play tonight to try and win our 3rd championship in the last 3 fall seasons. Ethan is playing basketball this season and Avery is back at it with gymnastics. Andrea is kicking butt on the tennis court and we have a lot of fun plans this winter. The Katy Perry video is coming along nicely though I still have yet to reach Katy herself. Still I'm not giving up. That's one thing cystic fibrosis has taught me. Quitting is not an option.

Happy 90th Nana Rose!

I wish all of you the happiest and healthiest of holidays.

Live your dreams and love your life,

Andy

 Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-18200422527490287542014-11-11T11:14:00.004-08:002014-11-11T11:14:47.578-08:00And the winter is...Many of us watch a two-hour movie like "Rocky" and think we can overcome the odds like that. We can win against even the toughest of opponents. Success comes to those of us who work for it no matter what.

First off, that was a movie.

Second of all, it takes a far longer time to defeat a resilient adversary than two hours.

Third, Apollo Creed doesn't hold a candle to depression.

Depression is a much tougher opponent

I'm generally a positive person as most of you who know me would probably attest. Still I'm having a difficult time these days staying positive.

It has nothing to do with my family. Andrea and the kids are doing amazing. Ethan's sports enthusiasm, Avery's humor and Andrea's love are what keep me from losing it most days.

From those who don't suffer from depression, I hear the usual remarks. "Why are you so down?" "Smile once in a while." "There are so many people worse off." "But Wish for Wendy was so great!"

What people don't understand is that depression isn't usually caused by one thing in particular. It's just a feeling that gets progressively worse and people like myself need medication and/or to see a therapist to maintain some sense of sanity.

This time of year is predominantly worse than any other season for me. I discussed this fact with my therapist the other day and decided to detail all of the things that have caused me to despise the winter time. I'm dedicating today's blog to providing a list of these issues.

For most individuals, winter depresses because we wake up and it's dark and we leave work or school and it's dark. That's a part of why the winter brings me down but only a small part. My reasons are more specific to my past.

As I write this, I also just got the news that one of our closest family friends Dr. Laurence "Larry" Rivkin has passed away. Dr. Rivkin was an amazing man who was close with my parents and was like a family member to me. Dr. Rivkin was also a pulmonologist and was always one to give me advice regarding my physical and also my mental health. He was a key in getting me into Ridgeview years ago, a move that dramatically changed my life. My family will miss Dr. Rivkin greatly as will so many others. This means I will be going to a funeral this week as well as facing my doctors at my CF Clinic. It's not going to be a great week.

Dr. Rivkin was always there for our family. It seemed whenever we had a question that he had an answer. Sadly I know that there will be so many questions left unanswered.

Here are 7 reasons that winter has been a tough time for me and how I'm looking for solutions to make things better.

1

PROBLEM: My Health

One, this is primarily the time of year where my thoughts turn toward my health as I've been down and out from CF most winters. Cold weather creates more pulmonary exasperations. I don't just worry about me. I worry about doing less and therefore asking my wife and kids to do more. It seems so unfair to me. I'm already on an oral antibiotic as I called my doctor because my cough was worse than normal. It wasn't all that noticeable to those around me but I could tell. I'm trying to be smart and do things to keep me strong. I have my doctor's appointment this week (Thursday) to check my PFT's and also to do a bone density scan to see if I have osteoporosis. I'll also be checking my glucose in the next few months to see if I have CFRD (CF related diabetes). It's a lot to deal with.

SOLUTION: Positivity

My solution is to constantly push myself in the gym. I'm still working out with my trainer twice a week. I've gone from running a mile a day on the treadmill to 1.5 to 2 miles a day. That's an extra 3.5 to 7 miles a week which should help my lungs. I also have to understand that if my lungs are having issues or if I do have Osteoporosis or CFRD that it's not the end of the world. I will just have to do things to improve them and those are all possibilities. Do I feel horrible right now? No, in fact, I think I'm in as good a shape as I've been in a long time. No test results can change that. Dr. Wolfenden, my doctor who passed away a few years ago from breast cancer, used to tell me that it's not what the results say. It's how I feel that matters the most. The results are for the doctors to make adjustments to keep me strong.

Battling cystic fibrosis is a 24 hour a day, 7 day a week job but in the winter it feels even longer.

2

PROBLEM: Depression

This is the time of year that my depression rears its ugly head. As I mentioned earlier, I spent 3 weeks as an outpatient at Ridgeview several years ago. I don't talk much about it but it was an eye-opening experience for me. I learned how to manage my issues and cope with my problems. I found my psychiatrist there and he has been a big help in turning my life around. I still claim that admitting you have depression and/or anxiety doesn't make you weak. In fact, it does the exact opposite.

SOLUTION: Seek help

My bouts with depression this time of year are why I made sure to see my therapist this month. I also scheduled a bi-monthly massage to cool my anxiety. The important thing is to monitor my issues and communicate them with my wife and my doctors. Sometimes that's easier said than done but it's a must to being mentally strong.

Battling cystic fibrosis is tough. Battling cystic fibrosis AND depression feels nearly insurmountable.

3

PROBLEM: Focused on dying

Many of my CF friends have passed away in the winter time and sadly there have been a lot more CF fatalities lately. It's almost become commonplace to hear that someone from CF is in the hospital or worse, died.

SOLUTION: Focus on living

I'm working on a Katy Perry CF video this winter to bring a little bit of the positivity back. It will be like the nebulizer video from last year. I believe that will help my spirits. I also believe it is my off-season work to beat CF. Wish for Wendy raises money. These videos raise awareness.

Katy, I hope I can "roar" when this winter is over.

4

PROBLEM: Rusty

Four years ago this month I lost one of my best friends as Rusty Sneiderman was shot and murdered. Over the next few years, we dealt with defiant lawyers, hate mail, constant calls from the media and tumultuous trials. It took a lot out of myself, Andrea and everyone else involved.

SOLUTION: Rusty

I can just remember Rusty for all of the good things he brought to me and my family. He left us way too soon. I still miss him most days.

Buddy, I miss you.

5

PROBLEM: Family

Wendy died in the winter. While Wendy was born and died before I was born, I could still feel the pain that Wendy's loss put on my parents. My mom used to remind me every year around Wendy's birthday how lucky I was. I didn't truly understand why she pushed this upon me until I was older and had my own children.

SOLUTION: My new family

The solution to this is to be a good dad to my children and help them understand how fortunate they are to be healthy. A lot of people take their health for granted. Sadly, I've never had that opportunity. My parents have always taught me to be grateful and giving. I hope that Andrea and I will be able to teach those same habits to our children. I also believe that the success of Wish for Wendy gives my sister's life more positive meaning.

It's hard to measure what type of impact a person I've never met has made on my life.

6

PROBLEM: Sports

As far as sports go, baseball is far and away my favorite sport and it is over in the winter. Some would argue it ended early this summer for the Braves. Having to watch the Falcons and Bulldogs unravel is not a cure for making me feel better. My softball season is also over until March.

SOLUTION: From player to coach

This winter, I'm going to focus on playing baseball with Ethan and helping Avery to learn softball. She wants to play next season and I'm going to be her coach. She and I have a deal. I can't wait!

I can't wait to teach them everything I know about the game I love.

7

PROBLEM: Highs and Lows

Wish for Wendy is in the books. I see so many of my friends for 12 hours that day in October and all of a sudden I don't see many of them for another 4 to 6 months. It's as if there is a big high and all of a sudden it's like crickets chirp for the next several months.

SOLUTION: Making an effort

I need to make more of an effort to see my friends even when it's freezing out. The introverted side of me has trouble making that effort. I still remember those days at the TEP house at UGA where I could not walk out of my room. I would grab the door knob, start to turn it and then let go. Sometimes you have to do things that are uncomfortable and for me that means making more of an effort to be social.

Sometimes I feel like this when Wish for Wendy is over. I am still talking but everyone is gone.

CONCLUSION:

So over the next 4 months, I will fight to be positive. I will continue to focus on my health but try not to over-analyze every aspect of it. I will communicate with my family and my doctors and make every effort to socialize with my friends.

This is the time of year where most days are a battle for me. I'm not going to pretend like this is "Rocky" and I'll just fight my way to the top in 2 hours.

My goal is just to be standing in 4 months.

I look forward to the challenge.

Now ring the damn bell!!!

Live your dreams and love your life!

Andy
Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-35719871904570106212014-10-07T08:31:00.002-07:002014-10-07T08:31:57.657-07:00The positives and negatives about having cystic fibrosis

I often get asked what it's like to have cystic fibrosis (CF). It's difficult to explain but I'll try. Here are 5 factors that affect my day and are brought on by CF. I've learned to put a positive spin on even the most negative one.

1. Doing my vest every morning

Negatives:

I wake up each morning knowing that I will be doing two hours of treatments per day. That's tough to stomach especially during the work week. My chest tends to have scratch marks some days from all of the vest exposure. I develop CF shoulder when I travel because I'm carrying the 30 pound machine all over the place. Finally, the machine is really loud so it's hard to hear anything while I'm doing it.

Positives:

BUT it's not like I woke up one morning and all of a sudden I had CF. That's the bright side. I was born with it. I know nothing different. I get to watch as much TV or play as much X-Box as I want while I'm doing my vest. It's not like I'm going anywhere. Now with the battery-powered vest, I can work out and play with the kids too. Also, the kids seem to like how I sound when my chest is vibrating. I've also gotten really good at lip-reading since I can't hear with the machine on.

It can be dull but at least the kids love it!

2. Taking 30 to 40 pills a day.

Negatives:

Each morning I have to organize the bottle that I take to work or on trips. I can't forget a pill. I have to remember to order them when I get low. I can take up to 16 pills at a time so that can be difficult especially when I'm at lunch with people who don't know I have CF. It's a bit difficult to explain. I'm sure outsiders think that I have a drug problem. Ha Ha!

Positives:

If there was an Olympic Games for pill-taking, I've got to be one of the favorites. It's also a great conversation piece and leads to raising awareness for CF.

And the gold medal goes to...

3. Knowing there are others with this disease that are passing away.

Negatives:

I get a post probably monthly and sometimes even weekly about someone with CF passing away. Reality creeps in that I have a terminal disease. My stomach twists and turns. Was this person in my nebulizer video? Am I doing enough to help raise money to find a cure? Am I next?

Positives:

Hard to find but I'd say realizing that every moment needs to be appreciated. The irony is that life itself is a terminal disease so we all should appreciate every moment but I think especially with a disease like CF that I've learned to really focus on the moments and enjoying them.

None of us knows when our time is but CF has taught me to appreciate whatever time I have.

4. The fear of every moment...

Negatives:

I feel like no matter how good a doctor's appointment I have, there's always a concern. Do I have CF-related diabetes? Have I had 14 vials of blood taken yet to prove it? Have we done the bone density test to see if I have Osteoperosis? Should I be screened for any of the cancers that CF makes you more likely to get? And this doesn't even include the biggest problem with having CF...the lungs!

Positives:

I take care of myself like few others. I watch what I eat for the most part. I work out 7 days a week. I go to a personal trainer. I may have CF but I'm actually in pretty incredible shape.

Every morning I have to be in beast mode.

5. Not being "normal."

Negatives:

It's difficult to turn down an invitation to go out because I have to go home and do my therapy. It's tough not being able to go out of town without carrying a huge vest machine and aerosol device. It's not that fun when security constantly checks your bag in front of everyone. I have to make sure before I go anywhere that I bring my meds because I need them to eat.

Positives:

Many of the opportunities I've gotten have been due to cystic fibrosis. I've been able to speak at many places. I've been able to throw out a first pitch at a Braves game and run with the Olympic Torch. In many ways, CF has made my life very special.

So in conclusion, CF greatly affects my life however it's not all bad. I am afforded many opportunities that I would not have been afforded without CF. Life isn't easy but is it easy for anyone really? Everyone has something. At least I know what my something is and I'm used to it. CF has taught me many things or maybe it's forced me to learn many things. It's taught me how to become self-motivated. It's shown me how precious life is. And most importantly, it's taught me that despite everything I'm very fortunate for the things I have.

Thank you CF!

I am asked often if I would have rather been born without CF and lived a "normal" life. Just when I'm thinking about saying "But of course," I remember a while back someone telling me their kid with CF saw my nebulizer video and it's now their favorite video and it makes them feel less insecure about having the disease. I feel my CF story helps younger people with this disease. Maybe I was given CF to help others. So I guess my answer would be "I'm ok with being born with CF...as long as one day myself and 70,000 others are cured!"

Live your dreams and love your life,

Andy Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-38027217147686335322014-10-07T07:51:00.002-07:002014-10-07T12:40:28.533-07:00Life in AndylandIt's been a while since I've written. Life has been pretty good so far but this is always a tough time of year for me. As it gets colder out, my allergies get worse. As my allergies get worse, my lungs usually follow. Enterovirus 68 is pretty scary. The virus seems to be spreading and it scares me that it can take someone completely healthy and put them in the hospital. Imagine what it can do to those of us with CF. Speaking of having CF, there have been a lot of deaths lately to CF patients around the world including a young person just today who happened to be in my nebulizer video. Many of them were much younger than me. We need a cure so badly.

As for me, I'm continuing to work hard to stay well. The new Afflovest has been great. I do it in the afternoon and in the evening. I'm still doing my Hill-Rom vest during the mornings. The one bright side is our new puppy Buddy loves the Hill Rom vest's vibration so much that he snuggles with me to loosen his phlegm as well.

Along with my 120 minutes of vest therapy,I am doing my hypertonic saline three times a day and Pulmozyme once a day. I am currently using my TOBI Podhaler this month twice a day. I run for 16 minutes on the treadmill almost every morning and work out 7 days a week. I go to a personal trainer twice a week and she kicks my butt. She tells me that I've reached the point where I'm doing things in the gym that she can't even do, that none of her clients can do...and that includes cardio which can be a CFer's worst enemy.

I'm still speaking quite a bit. I spoke at my kids' school the other day and have speeches in both Orlando and Reno coming up.

Wish for Wendy is only a few weeks away and we're about set. I'm excited about the new ambassador program where teams will be playing in honor of so many brave children with CF. I'm also excited that we will exceed $2 million this year.

As far as family life, it couldn't be much better.

Ethan is a sportsaholic but I'm secretly proud of him. We talk baseball all of the time and he's playing soccer, flag football, tennis and basketball as well. He loves to compete. Every night he writes down the scores of the games he was watching and keeps them in a notebook filed away. We are saving that notebook for when he gets older. When I think about the stroke that nearly took him from us when he was born, I realize what a miracle this kid truly is.

Avery is one heck of a gymnast. She can get in positions that I'd be calling the ER to get me out of. She has taken an interest in baseball and wants to play softball this spring but only if I'm her coach. If that's what she wants, I'm game. She has me wrapped around her little finger anyway. She is doing amazing in school. I credit that to her mom and her genes. If she makes the kids around her laugh by telling stupid jokes, then I'll give credit to myself.

Andrea is doing well. She's the tennis queen in our house. She has gotten so good. I remember when I turned her onto the game. I never thought she'd be the champ of the household. Now she even takes me down in table tennis. I'm not liking this.

Overall I can't complain much. I just hope that I can stay well as the weather gets colder. If I get sick, it's not due to lack of effort on my part and that helps me get through the day. I will continue to fight and most importantly I will continue to dream. Looking at my beautiful family, most of those dreams have already come true.

Live your dreams and love your life,

Andy

I'm luckyAndy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-92032587538218240912014-08-11T13:11:00.001-07:002014-08-14T05:54:12.657-07:00A 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 2014Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-58712814177654378992014-08-01T13:53:00.004-07:002014-08-04T10:30:21.230-07:00The "Vest" Thing to Happen for my CF in a long timeHello 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

Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-67293701855364210462014-06-25T13:12:00.002-07:002014-06-25T13:12:36.755-07:00Another CF drug breakthrough...and what it means to meIt'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

Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-15515594615778828662014-06-19T11:48:00.001-07:002014-06-19T12:00:28.447-07:00An update on my healthAs 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

Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-592002510378455922014-05-28T13:19:00.003-07:002014-06-19T12:01:24.271-07:00Prepared for tomorrowI 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!

Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-12837232017690406702014-04-03T10:44:00.003-07:002014-04-03T10:44:52.095-07:00One 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,

AndyAndy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-31876980028730007762014-03-12T13:22:00.000-07:002014-03-12T13:22:18.101-07:002 long weeksWednesday, 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
Andy Lipmanhttp://email@example.com:blogger.com,1999:blog-5964547836248318502.post-73930558079580287452014-02-20T13:41:00.000-08:002014-02-20T13:48:53.344-08:00A Showdown with CF this Friday

"Why Me?"

I ask those two words a lot more than people know. I have moments where I get so frustrated and just want to give up. I'm fortunate to have a strong and supportive family who won't let me quit. The people who primarily accept the role as my ass-kickers are my parents who had to live with me for the better part of 2 decades and my wife, Andrea, who has had to live with me for the last thirteen years. Sometimes I need a kick in the butt when things aren't going my way. Don't we all?

I got a nice note from a 12-year old in California a few weeks ago who said that I'm his hero because of the way I fight this disease and publicize it. It made me feel really good. When I was a kid, I didn't have any CF role models. I'm not saying I'm a role model because I'm far from perfect but just the fact that I'm relatively healthy at 40 years old helps a young kid with CF to believe that he or she can do it too. I hope that my example won't be as rare a decade from now. Heck, I hope there is no such thing as cystic fibrosis by then.

Thanks to the little boy who made my week.

A past I'd prefer to forget

I remember the last time I quit. I was on IVs about 6 years ago and I'd had them off and on for 5 weeks. My doctor, at the time, went out of the country, my IV's were pulled too early and I had several serious allergic reactions while on the drugs. I freaked out and became a shell of myself. I quit on my parents that month. I quit on my wife (who was pregnant at the time). I quit on my daughter. Worst of all, I quit on myself. Not a day goes by that I don't regret how I handled that situation and how I pained the people that I love. Part of me never wants to deal with that physical pain again but another part of me wants a second chance to prove that I can overcome it mentally.

I still battle a lot of bitterness regarding the 40 years I've battled this disease. It sucks that I spend over 2 hours of my day doing treatments when that time could be better spent hanging out with my family. I hate that every doctor's appointment seems to feel like a life or death scenario. Lastly, I hate that I will someday have to explain to my children about my life expectancy and that they are both carriers of the disease that killed their aunt and that their father fights everyday.

When I was younger, I let a lot of this bitterness towards CF consume me but I try not to do that as much now. I try to look at the positives in life but I do have moments when all of these fears and frustrations rear their ugly heads.

The Comeback

A few weeks ago, I began my comeback against CF. I went back to Lori at Bodyrich Fitness and had two extremely grueling 30-minute sessions. Some of the things we do on a weekly basis include running at high speeds on the treadmill, running up 5 and down 5 sets of stairs and doing tons of bicep and ab exercises. I also spend most of that workout fending off her barbs that she uses to motivate me. I love it. Lori definitely pushes me more than I can push myself on my own.

Rising up against CF

I started on TOBI earlier this month. I tried a new technique which definitely helped lessen my coughing. It involved keeping my neck straighter and raising my chin more. The great thing about the new TOBI Podhaler is it only adds about 5 minutes to my therapy morning and night as opposed to the old aerosol which added roughly 40 minutes twice a day. I also learned a better way to clean my nebulizers which decreases the likelihood that germs will attach themselves to my equipment.

Friday - The Nerves are setting in

As I'm writing, I just found out my sputum culture results. For anyone who has had to wait on results from a doctor's office, you know what that wait can feel like. It can be grueling at times. When I finally received the results, I was both relieved and concerned. Most of the bacteria they found were the same as usual and there was no trace of pseudomonas which is the scariest CF bug. However they did find one bacteria that was not oral antibiotic sensitive meaning IV antibiotics will probably be necessary. After consulting with my doctor at Emory as well as 2 of my previous doctors, I have decided to take another pulmonary function test this Friday (just 3 weeks after my last one). If the results are worse or un-changed (and sadly I suspect this will be the case), I will go on IVs. If they're better, I will stay the course. I'm trying not to go into this as I sometimes do as just the patient. I can't go into this having my fears block me from making wise judgements regarding my health. I'm looking at the determination whether to go on IV's more as a family decision rather than just my decision. I want to do whatever it takes to keep me strong for not only me but for my wife and my children. I owe them that. The likelihood is that I'll have to go on IV drugs for 10 days to 2 weeks before I can do another PFT to determine if the drugs are working.

I'll keep everyone updated after my Friday appointment. I hope that all of you are doing well healthwise.

Regardless of Friday's report, I won't give up. I can't. I have too many people who I love who depend on me to fight this disease at 100% every second of every day. They won't be disappointed this time around...

And neither will I.

Andy

"Every day with CF is like running for your life...but it's a race I plan to win!"Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-49367093801649983182014-01-31T07:58:00.000-08:002014-01-31T07:58:26.180-08:00Disappointing but not discouragingI don't usually write so many posts in one week but since I had my doctor's appointment this morning, I'm going to go ahead and write another.

The appointment was disappointing but not discouraging. My numbers were down about 6 points so my doctor will check my sputum culture and decide what antibiotics I need to be on. Winter is notorious for being the toughest time for me anyway. I'm also going to change how I do my TOBI Podhaler to see if that increases my numbers.

Like I said, I'm disappointed but in no way discouraged. I'll continue to work hard in the gym and do what I have to do to beat this disease. There are a lot of battles in the war against CF and today my body lost BUT my mind won. I still have a positive outlook and look forward to going back in 3 months and showing those doctors what Andy Lipman is all about.

A long time ago I wanted to be this guy...

I haven't given up on that dream just yet!

Don't worry about me. I will continue to fight and some day I will win.

Thanks for listening.

Andy

Andy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-81424741083479929962014-01-30T08:54:00.000-08:002014-01-30T08:54:00.283-08:00Snow-Pocolypse 2014

Tuesday night was absolutely the craziest driving day I've ever encountered. We joke about Atlanta drivers when snow hits but this was absolute chaos. I watched as people abandoned their cars on the side of the road. My commute home is normally 40 minutes. On Tuesday, it was 400 minutes (six and a half hours). I'm a southerner born and raised but snow doesn't scare me nor does ice. I've driven in both many times. Still what happened in Atlanta a few days ago was like a scene from "The Day After Tomorrow." Everyone was losing their minds. People were calling radio shows with stories of commutes of 8 hours plus and how they were losing their minds. School buses were still dropping kids off at 7 o'clock at night. People were handing out food to motorists whose cars were either stuck on the ice or who had run out of fuel.

The scariest part for me was that I didn't have the choice of staying at someone's house. I had to get home to do my therapy. That's all I could think about. Fortunately I had enough gas and I was given a great shortcut by mom that probably saved me at least an hour. Thanks Mom! I haven't ever seen that many blue lights flashing in Atlanta. There were tons of accidents. I probably witnessed at least a dozen. There was a bright side too. There were a lot of good samaritans out there. People offered their homes to those who needed places to stay. We actually took a family in too. People were handing out food on the side of the road. I saw strangers helping strangers push their cars off of the ice. It was refreshing in many ways.

What has this storm taught us in Atlanta? Probably not much. We probably need a better mass transit system that can reach the suburbs instead of mainly the city. We don't have the equipment to handle a storm like this nor should we spend the money to do so since storms like this occur every 3 to 5 years. I do believe that every kid should learn how to drive on ice when taking their driver's test and maybe adults need to get recertified too. We have over 6 million people in this city and they all left for home around the same time and that was another problem. I wish that our mayor, who quite frankly does not have the ability outside of the metropolitan area, had the authority to tell everyone when they could leave for home. The schools should have left first.

Thank goodness Tuesday is over but it sucks being the laughing stock of the country. Perhaps we'll be ready next time but I doubt it. I know this. If aliens wreak havoc, they'll probably want to start in Atlanta. Chaos is guaranteed especially if they have a little white powder that they can pour from the sky for a few hours.

I hope everyone got home safe on Tuesday or Wednesday.

Enjoy the Super Bowl.

AndyAndy Lipmanhttp://firstname.lastname@example.com:blogger.com,1999:blog-5964547836248318502.post-47991627094777275282014-01-28T09:21:00.000-08:002014-01-28T09:21:41.671-08:00What's up Doc?I'm heading to the doctor this Friday.

The picture above is what came up under Google when I typed in doctor.

This is what I envision though.

I return to the doctor after a 12-week absence. I'm hoping the news will be good. Last time, my numbers went up a little but they still weren't at my baseline. I've gained a few more pounds (mostly muscle) as my doctor advised. The thing about cystic fibrosis though is it doesn't care if you're as positive as Tony Robbins or as muscular as Hulk Hogan. All it cares about is destroying your lungs and your digestive system. I have been working my tail off the last 6 months including using a personal trainer for 3 months. Every morning, I am now jumping rope 100 times, running from 4.0 to 8.0 on the treadmill and working out with weights. On Sunday, I don't lift weights but I still work out my abs, run and jump rope. God may rest on Sunday but people with cystic fibrosis can't afford to.

I have a few other reasons to stay healthy.

I can always tell when my appointment is coming up. I'm a lot moodier during the week and this week is no exception as Andrea and the kids will probably attest to. I think it's just my fighter's mentality that is coming out. I work out a lot harder the week of my appointment as well. I constantly question if there is anything I'm not doing that I could be doing to improve my lung function. The answer I'm sure is always yes but I feel I get the most out of myself in the 24 hours I get everyday.

The truth is that I'm not perfect although I sometimes hold myself to that standard. I did eliminate gummy bears from my diet but I still eat M&M's. I wish I could work out more than 30 minutes a day but with my 40-minute long therapy treatments twice a day, I can't afford an entire hour to work out.

I'm very good about doing my treatments and taking my pills. I'm on a streak that would make Cal Ripken, Jr. proud.

Yeah, but let's see you put on a vest for 80 minutes a day Cal.

I know that there is a chance I'll go in on Friday and the doctor will give me bad news. I am doing my pulmonary function tests and probably having my blood drawn for my glucose test to see if I have CF-related diabetes (CFRD). Preparing myself for bad news does not insinuate that I have a negative outlook. That's just the reality with having this disease. Still I know that I'm doing everything in my power to stay strong especially during this season which is typically when I'm at my worst healthwise. This freezing weather is not helping things. I know that with cystic fibrosis, and pardon the pun, that I'll always have a puncher's chance.

Avery said something that I posted on Facebook the other day that nearly had me in tears. I told her I couldn't make her school service Friday morning in which her class is leading. She told me "It's okay. It's more important that you go to the doctor and stay healthy so you can make more of these things." Before you think she's the sweetest child in the world, she also said something else the other day when someone asked where she got her blonde hair from. I said that I had blonde hair. Avery said, "I didn't get it from you. You have a lot of gray hair. I don't have gray hair." Little does she know she caused some of that gray hair and I'm sure she'll cause a lot more when she's a teenager.

By the way, who was the overall champ in the 7 and under gymnastics this past weekend? This girl. That's who. Sorry I have to brag as a proud father.

Avery Lipman - gymnastics star!

Regardless of what the doctors tell me on Friday, I'll continue to work hard, stay regimented and take the advice of my physicians. Most importantly, I will continue to live my life and be grateful for every moment that I get on this earth. My life isn't easy but there are tons of other people in this world that deal with far worse. I am blessed to have Andrea, the kids, my parents, my sister and a great group of friends and family.

T-minus 69 hours till I walk through Emory's doors.

Ring the damn bell!

Andy

Andy Lipmanhttp://email@example.com