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!
Monday, September 24, 2012
As Ethan Lipman drove towards the goal in his first ever little league soccer game, fans at the Marcus JCC cheered. Ethan Lipman of Team USA had defenders all around him as he dribbled from the right side of the goal. He kicked the ball with his foot as hard as he could in the direction of the small webbed white goal as I, his father, tried to stabilize my camera phone from behind the goal...Ethan did not score a goal that afternoon. He didn't need to score a goal for it to matter to Andrea and I nor the rest of our family.
To understand, you'd have to go back to August 12, 2008. That was the day that Ethan made another debut, his birth. Ethan was born that day with high expectations. I always wanted a boy who I could pass on all my sports knowledge to (most of it useless of course). I'd collected baseball cards for years so that one day I could pass them on to my son.
When Ethan Cole Lipman was born, we were so excited to welcome him to the world. Ethan was named after Andrea's father's father (her grandfather Erwin) and my mother's father (my grandfather Carl), both who were survivors of the Holocaust and had passed away several years ago. Ethan's Hebrew name was Zacharia Nissim which was after the fact that he was a miracle because of IVF and after my sister Wendy who we've raised so much money in her memory to cure cystic fibrosis.
Though we'd been so thrilled to welcome little Ethan, those hopes and dreams were soon shattered. Ethan was in NICU pretty soon after his birth because his oxygen levels were low and during one attempt in which Andrea tried to breast feed him, doctors informed me and Andrea that his oxygen levels had gone from 100% to 20% in a matter of seconds. They believed he was having seizures although Andrea and I still aren't sure that's what happened. What was confirmed was that Ethan had an infarct at birth which is a stroke that happens in the brain. Ethan had major brain damage on his left side which is notorious for affecting speech. Our doctor told us that Ethan had sustained quite a tremendous amount of loss in his left temporal lobe. We were devastated. He did not give Ethan a lot of hope nor any of us really. In a matter of moments, I e-mailed everyone to cancel Ethan's bris, a long-standing tradition for a Jewish family in which a baby boy is circumcised.
There is not a known reason why Ethan had an infarct. Just to give you an idea of how scary an infarct is, here is the Wikipedia definition which I soon looked up after the doctor revealed his diagnosis:
Cerebral infarction is the ischemic kind of stroke due to a disturbance in the blood vessels supplying blood to the brain. It can be atherothrombotic or embolic.[6] Stroke caused by cerebral infarction should be distinguished from two other kinds of stroke: cerebral hemorrhage and subarachnoid hemorrhage. Cerebral infarctions vary in their severity with one third of the cases resulting in death.
Ethan was moved to Scottish Rite Children's Hospital a few days after he was born. We'd never been able to hold him in our arms in our own room. He'd never gotten off the wires that determined his levels. He was soon on an apnea monitor and seizure medication. High hopes for our son had turned into massive concern. Andrea and I were crying all of the time.
Still we believed in our son and thank God for Andrea. She investigated all of the possibilities concerning stem cells since she had been the one to save Ethan's cord blood. I, at the time, was having difficulty coping with this. I'd let my anxiety and depression get to me. I did not know how to handle all of this. Still I looked in my son's eyes and I believed he could get out of this; I just didn't know what to do to help him. I remembered hearing how my parents were told their son would not live to see his teens yet still here I was so I knew anything was possible.
Andrea did the grunt work and found a study at Duke University for a stem cell transplant. She contacted them and got Ethan into the study. I'm positive that if almost anyone else had been his mother, there is no way that Ethan would have been on a soccer field yesterday. Thank you Andrea for your hard work - it probably saved our son's life or at least his way of life.
Ethan received the stem cell transplant early in 2009 and has since overwhelmingly proved our doctor at Piedmont wrong. He is off seizure meds and has been so since a few months prior to his first birthday. He is no longer on an apnea monitor either. He is in speech therapy, which again Andrea was able to find him a case worker. He is speaking and is age equivalent in all areas. He goes to the neurologist annually and our doctor says unless you're looking for it, you can't tell which side is his weaker side. He now plays soccer and takes part in gymnastics.
It's hard to believe that it has been four plus years since that frightening day in 2008, the day we thought we'd lost our little boy. Now every time he dribbles the ball it doesn't matter if he loses focus and starts playing in the grass. It doesn't matter if someone steals the ball from him. It doesn't even matter if he scores a goal. What matters is that he is on this earth. He is healthy. I still have a load of baseball cards to give to him though right now he prefers Power Rangers and playing X-box college football.
On Sunday September 23rd, Ethan raced towards me with an opportunity to score yet still he did not score a goal...
he actually scored two.
http://www.youtube.com/watch?v=k5Eip9EJMiI - here is the first goal of many. He later scored another goal and nearly a third.
Shortly after his first goal, Ethan gave me a high five. I'm not sure which leg he used to kick the ball in the goal. What I do know is that it doesn't matter because there will be plenty of more goals to see.
Never stop believing.
Love,
Andy
A wonderful weekend of firsts
This weekend was awesome. On Friday night, we went to a surprise 40th birthday celebration for a close friend.
On Saturday, we made our way up to Athens where I got to stand on the field with the other 40 under 40 honorees and wave to the thousands of Bulldog fans who were in their seats 30 minutes prior to the game. I actually decided not to stand and wave. I instead did my Heisman Trophy pose. I figured I'd probably never be on the field again so why not.
It was nice tailgating with some of my friends up at north campus. I was especially proud of Andrea for agreeing to wear UGA clothing. This was a big moment in our lives...maybe as big as when our first child was born. Things will return to normal next week as UGA plays UT in Athens but still I will always have this blackmail...I mean evidence that UGA is her 2nd favorite team.
Sunday morning, Ethan played his first soccer game and dedicated his first goal to his sister. Then he scored another one. Two goals in his debut. I have the video proof and will post each goal to YouTube as I'm a very proud papa. Later the kids and I went to a Halloween store, played some putt-putt and then went to see Finding Nemo in 3D. I enclosed a cute picture of my two fish.
All and all, it was an awesome weekend...even all of my teams won. The Braves Magic Number to clinch a playoff berth is 2. The Falcons are 3-0 and Georgia is 4-0. I hope all of my teams can keep it up.
I hope that everyone had a wonderful weekend.
Andy
Thursday, September 20, 2012
Wish for Wendy Wednesday
We continue to get great support for Wish for Wendy from restaurants like Goldfish and Tin Lizzy's. Last night our family went to Goldfish and the staff was so warm and inviting. 10% of everyone's bill every Wednesday in September goes to the CFF in memory of Wendy. We hope that you can join us next week. Enclosed is a picture of Avery handing the host at Goldfish a picture she drew thanking them for participating in Wish for Wendy Wednesday.
I hope everyone is well.
Andy
I hope everyone is well.
Andy
Wednesday, September 19, 2012
The Cystic Fibrosis Olympics
I would like to create the Cystic Fibrosis Olympics. I know they already have the transplant games but those are events that include track and field and actual Olympic sports. I'm coming up with events that only people with CF could medal in. Here are the 10 Olympic sports for a CF Decathlete to compete in to win gold. Good luck decathletes!
10. Take 10 pills within 10 seconds while concealing the medication from others. At the end, we'll ask your dinner partner if he or she saw you taking them. If they did, that's a one point deduction. Janet Jackson is disqualified as she is not very good at concealing things.
9. Do your 30 minute vest treatment, use your laptop and watch TV all at the same time. This takes special multi-tasking skills. If you can write without squiggly lines at the same time, bonus points!
8. Come up with 10 acronyms for CF in 2 minutes. Cystic fibrosis does not count. No cursing!
7. Speak to someone while wearing a hospital mask while they write down what you say. If they get it all right, you win. This is like a CF game of telephone. Extra credit if you can watch Honey Boo Boo without watching the subtitles and still understand what they're saying.
6. Write down all of the meds you take without developing a hand or wrist cramp. If you spell a majority of the drugs right, bonus points!
5. Drive while wearing a nebulizer. If you get in a wreck, you are disqualified. Lindsey Lohan and Amanda Bynes are automatically disqualified.
4. Go an entire 30 minutes of therapy without knocking out one of your vest tubes. This is not for someone who enjoys to play X-Box while doing his or her therapy.
3. Do all of your annual blood tests without fainting. I usually have 12 to 13 vials of blood taken and we of course have to fast about 12 hours in advance. It's like CF Survivor without a host...or a tribal ceremony.
2. Explain cystic fibrosis to someone without using the following 5 words: Lungs, disease, therapy, pills or digestive. It's like a CF game of Password.
1. Try to make rings with the smoke that you are breathing out of your nebulizer. While the general public will think it's cooler coming from a cigar, you will be the George Burns of CF nation so stand and be proud.
I wish everyone luck. The medals will be given out during Cystic Fibrosis Appreciation Month along with a free subscription to CF Illustrated.
Thanks!
Andy
A fun 10th Anniversary
Andrea and I were supposed to go to Italy to celebrate our 10th but we decided to do it next year...so instead I brought Italy to Andrea. We went out this past Saturday night. I had a Disco Limo pick us up. There were purple and red colors flashing in the limo while all of these crazy music videos were being shown on the TV's. We went to La Pietra Cucina (I highly recommend it) in Midtown. After, we went to Flip Burger for our favorite milkshakes. It was so much fun.
Avery helped me wave down the limo when it got to our neighborhood. Ethan and Avery checked out the inside to make sure it was okay for mommy and daddy. It was definitely a 10th anniversary to remember.
And as the picture enclosed shows you, Andrea looked beautiful.
Andrea, I love you! Happy Anniversary!
Love,
Andy
P.S. Avery, thanks for keeping the secret.
Avery helped me wave down the limo when it got to our neighborhood. Ethan and Avery checked out the inside to make sure it was okay for mommy and daddy. It was definitely a 10th anniversary to remember.
And as the picture enclosed shows you, Andrea looked beautiful.
Andrea, I love you! Happy Anniversary!
Love,
Andy
P.S. Avery, thanks for keeping the secret.
Marist, Carrollton and more
Thanks everyone for your well wishes Thursday and Friday at Marist. It was an amazing experience. On Thursday night, I spoke to the Parents-in-Action Group which featured 2 CF families. I did my initial presentation for 40 minutes and it was very well-received. One of the ladies at the presentation came up to me and asked if I lived on West Fontainebleau Drive. I said "Yes, how did you know?" She saw a picture of my house when I was a little boy. She said "Did you live at 2768 West Fontainebleau Drive?" "Yes," I said. She said "That's my house. I live there. We had heard about the girl who passed away and how there was a little boy who lived there." She said "We still feel that girl lives in that house." She told me she thinks Wendy brought her to that speech for her to meet me. I know that seems a little creepy but it was actually pretty cool to me. I truly believe Wendy is out there. The woman said I could visit her house anytime and bring my children to see where their daddy grew up.
On Friday, I arrived at Marist to meet my old high school friend Danielle Langston who hired me to speak at Marist. We waived our speaking fee in exchange for a donation to our foundation from Marist. I just didn't know how much Marist would donate. Danielle walked me around and introduced me to some of the staff. We also got to catch up as we also did the night before. I asked Danielle some questions beforehand. I asked her what was the best speech she'd seen at an assembly but more importantly I wanted to know the worst speech. Apparently the worst speech was the History of Photography in which the speaker read from her notes and bored the students. So I started my speech to 1,200 people with "I'd like to welcome you to The History of Photography Part 2." Everyone laughed. The speech and PowerPoint presentation went very well. I spoke for 45 minutes to the crowd and even got a standing ovation afterwards. Then Danielle (Ms. Langston as the students know her) presented me a check for $1,500. It was very generous.
After the speech, I spoke to the late Erin Sullivan's mother. Erin passed away from CF a few years ago. I was really impressed that she came. I know it must have been difficult. The Marist Volleyball team had raised a lot of money in her memory. I also met a student who had survived a brain tumor. She was inspired by my speech and I was inspired by her.
Later in the day, I got to talk to a creative writing class. The kids asked a lot of great questions. We talked for about 50 minutes until the bell rang. Then Danielle brought me to the lunch room where I got 90 minutes with 4 different groups as we talked about their educational futures. It was a great experience.
Afterwards I left Marist and joined Andrea as we got to walk home from school with Avery. I'd never done that before. It was so much fun though I carried her most of the way. My daughter has me wrapped around her little finger and I love it.
On Monday, we celebrated the Jewish New Year for Rosh Hashanah which means a day off of work. On Tuesday, I went to Carrollton where I spoke to the Carrollton rotary club and sold 14 more books. Today I have a presentation for LinkedIn and a meeting with a potential sponsor for Wish for Wendy. Tomorrow I am an honoree for the UGA 40 under 40 which I'm very excited about. It takes place at the Georgia Aquarium. My friend Seth and my associate and friend Linda Murphy from the CF Foundation will also be attending along with my Aunt Loretta (who nominated me), my Aunt Susie, my cousin Erin, Andrea, Emily and my parents.
The last 2 weeks have been the busiest of my life as far as speaking engagements and other appearances go but still I'm honored that these people want to hear my story.
Again thank you as always for the support. To my Jewish friends, Happy New Year (L'sh'na Tovah!). To my other friends, I hope that you are having a wonderful week and I wish you all a great weekend.
Andy
Friday, September 14, 2012
Today
I'm speaking at Marist School in Atlanta about overcoming the odds. Two weeks ago I spoke to an audience of 3 to prepare me which was my smallest audience ever. Today I'm speaking to 1,200, my largest audience ever. I guess I can't take attendance this time (Andrea came up with that one).
Wish me luck!!!! I'll blog about the speech next week.
Andy
Wish me luck!!!! I'll blog about the speech next week.
Andy
Monday, September 10, 2012
How my kids view my CF
I interviewed my kids about cystic fibrosis. See what they said.
http://www.youtube.com/watch?v=34FpWtkx91I
How my kids view CF. It's not as scary an issue as some may think...at least to my little ones.
andy
http://www.youtube.com/watch?v=34FpWtkx91I
How my kids view CF. It's not as scary an issue as some may think...at least to my little ones.
andy
Top 10 misconceptions about those of us with CF
Here are the Top 10 things you might not know about someone with CF (Humorous):
10. When people play tennis, they develop tennis elbow. We people with CF develop CF Shoulder. That's the pain we get in our shoulder from traveling with our 25 pound therapy machine. I actually develop scratches from it. I don't know if it really affects my tennis game as much as tennis elbow.
9. When you have CF and you travel, you are immediately linked to terrorism. I say that because your machine is checked at security for no less than 10 minutes. People look at you funny like "How could you?," "I hope he's not getting on my plane," and "They got you, you bastard!" We look at you saying, "It's just to help me breathe! Geez!"
8. When you finish doing your vest, people may think you're being abused. I have marks all over my body because of how the vest grabs tightly around me. It looks like I've been caned.
7. Those of us with CF have a bulge in our pockets a lot of times. It's not because we're happy to see you. It's because we have a pill bottle. We might be happy to see you but please know the bulge is just coincidence.
6. If you see smoke coming from our room, please don't assume that we are smoking a couple of packs a day or even that we're "pot heads." That's just our aerosols. It looks even stranger when we're driving.
5. When you see an adult in a children's hospital by himself, don't think the worst of that person. It may just be that there is not an adult CF center available to us as for many years we were only able to go to children's hospitals to see a doctor who specializes in CF. Now if Chris Hanson confronts us, that's another story altogether.
4. If you hear from a hospital room, "Blow, blow, blow, come on, blow! Take it all in!", get your mind out of the gutter. We're doing our pulmonary function tests.
3. If you see us going to the bathroom and then coming out 30 seconds later, I promise that we are not having bladder issues and that we are washing our hands. It's just that we're not really using the bathroom. We're spitting phlegm into the toilets. Not that that's any more pleasant.
2. If you hear us talking about how much we enjoy our vests because when we were little our parents hit us all the time, don't call DFCS. Our parents had to do postural drainage on our backs, sides and fronts to loosen the phlegm in our lungs. Now that the vest is available, we don't need our parents' assistance anymore.
1. And finally, if there's a sign on our door that says, "When the room's a rockin', don't come a knockin!", don't get the wrong idea. We are just doing our therapy.
I hope you guys enjoyed this.
Andy
10. When people play tennis, they develop tennis elbow. We people with CF develop CF Shoulder. That's the pain we get in our shoulder from traveling with our 25 pound therapy machine. I actually develop scratches from it. I don't know if it really affects my tennis game as much as tennis elbow.
9. When you have CF and you travel, you are immediately linked to terrorism. I say that because your machine is checked at security for no less than 10 minutes. People look at you funny like "How could you?," "I hope he's not getting on my plane," and "They got you, you bastard!" We look at you saying, "It's just to help me breathe! Geez!"
8. When you finish doing your vest, people may think you're being abused. I have marks all over my body because of how the vest grabs tightly around me. It looks like I've been caned.
7. Those of us with CF have a bulge in our pockets a lot of times. It's not because we're happy to see you. It's because we have a pill bottle. We might be happy to see you but please know the bulge is just coincidence.
6. If you see smoke coming from our room, please don't assume that we are smoking a couple of packs a day or even that we're "pot heads." That's just our aerosols. It looks even stranger when we're driving.
5. When you see an adult in a children's hospital by himself, don't think the worst of that person. It may just be that there is not an adult CF center available to us as for many years we were only able to go to children's hospitals to see a doctor who specializes in CF. Now if Chris Hanson confronts us, that's another story altogether.
4. If you hear from a hospital room, "Blow, blow, blow, come on, blow! Take it all in!", get your mind out of the gutter. We're doing our pulmonary function tests.
3. If you see us going to the bathroom and then coming out 30 seconds later, I promise that we are not having bladder issues and that we are washing our hands. It's just that we're not really using the bathroom. We're spitting phlegm into the toilets. Not that that's any more pleasant.
2. If you hear us talking about how much we enjoy our vests because when we were little our parents hit us all the time, don't call DFCS. Our parents had to do postural drainage on our backs, sides and fronts to loosen the phlegm in our lungs. Now that the vest is available, we don't need our parents' assistance anymore.
1. And finally, if there's a sign on our door that says, "When the room's a rockin', don't come a knockin!", don't get the wrong idea. We are just doing our therapy.
I hope you guys enjoyed this.
Andy
Wednesday, September 5, 2012
How you know when your office mates might need a boot camp?
How do you you know when your office mates might need a boot camp to get in better shape?
How about this? It's your birthday and instead of blowing up balloons and throwing them in your office, the person who bought them tells you that it's too tough to blow them up so here was the result. I thought I was the one with the lung disease! HA HA!
Either way, it's great to be 39!
Thanks DiversiTech for a great cake, great friends and great fun.
Oh, and my cake was a joke on the fact that I speak a lot and have met celebrities through our foundation. It was a take on Anchorman. It read:
"I'm kind of a big deal around here."
Thanks Andrea for taking me to the Braves game on my birthday. We had a great time. Thanks to Andrea, my parents and Emily for taking me out on my birthday the night before. Thanks to everyone who called, texted or e-mailed me a Happy Birthday. It meant a lot. I can't believe that I'll be 40 in 364 days.
Andy
How about this? It's your birthday and instead of blowing up balloons and throwing them in your office, the person who bought them tells you that it's too tough to blow them up so here was the result. I thought I was the one with the lung disease! HA HA!
Either way, it's great to be 39!
Thanks DiversiTech for a great cake, great friends and great fun.
Oh, and my cake was a joke on the fact that I speak a lot and have met celebrities through our foundation. It was a take on Anchorman. It read:
"I'm kind of a big deal around here."
Thanks Andrea for taking me to the Braves game on my birthday. We had a great time. Thanks to Andrea, my parents and Emily for taking me out on my birthday the night before. Thanks to everyone who called, texted or e-mailed me a Happy Birthday. It meant a lot. I can't believe that I'll be 40 in 364 days.
Andy
What is it like to have cystic fibrosis? A message on my 39th birthday
Many of you ask me about my health and what it's like to have CF. I wanted to give it a shot and explain it. Unfortunately, there is no simple answer.
Before I begin, there are worse things in this world than having cystic fibrosis. I also want to be clear that I am lucky compared to most people with CF. There are many people with far worse symptoms and who deal with quarterly hospital visits. I've been more fortunate. This is not a pity party. I have been truly fortunate in my life and I want you, the reader, to be aware of that before you go any further.
Also, I just had my most recent appointment (Friday August 31st). Some of my numbers were down and others were up. My doctor said she could basically tell that as a whole I am quite a big stronger. I also had my annual blood tests (picture enclosed). I had to give 12 vials of blood at 9am and then another vial of blood at 11am. I could not eat from midnight the night before until I had my last vial taken at 11am. I also had to drink an orange drink that tasted like a very sugary Sunkist. It was not pleasant.
Still I was satisfied with the results but not ecstatic. I always expect better. Like most people, I'm my worst critic.
Having cystic fibrosis (CF) is in a word, different. Every morning I wake up and have to do 40 minutes of treatments which include my vest and two aerosol treatments. I do them anytime between 5:30am and 6:30am. Following my treatments, I usually work out for 30 to 40 minutes and then I either do my TOBI treatment which lasts 40 minutes or I get ready for work and do my TOBI treatment in the car with my portable machine (I call myself the superhero known as "THE NEBULIZER DRIVER"). Prior to my TOBI treatment, I go through my pills and pick out 12 pills for the day (13 on Mondays, Wednesdays and Fridays when I take Zithromax which is an antibiotic) plus my 20 to 25 pills for pancreatic digestion. I have to make sure I bring my pill bottle with me to work or anywhere I go every day or I have to go back home and get it. It's not like CVS or Walgreens carries the pills I take. I get them from an on-line pharmacy. Every day before I leave for work, I make sure I grab my wallet, my cell phone, my keys and most importantly, my pill bottle.
At night, I have to do the same treatments except I don't have to do my Pulmozyme aerosol unless I'm sick. During the day, my mind can be consumed with when I'll find the time to do my night time treatments yet still get time with my kids and wife and yet still not go to bed near midnight. It's tough to balance sometimes. When my kids go to bed, I want that time to spend with my wife. The latest I usually do my treatments is around 9:30pm. I find myself watching TV, answering e-mails, writing my newest blog or playing X-Box during my treatments.
Traveling with CF is in a word, time-consuming. I have to pack about 40 pills for each day that I'm gone plus I bring an extra day of pills in case there is bad weather or something comes up where I cannot make it home at the expected date. I also bring 3 to 5 nebulizers per day depending on if I'm on TOBI that month or not. I also have to bring my vest therapy machine, my aerosol machine, my inhaler and all of my sinus meds. So for a 7-day trip when I'm on TOBI, that's 40 nebulizers (including the extra day just in case), 320 pills and all of my nasals meds, aerosol meds and machinery. Yes, I still have to bring clothes though I would probably be have the most luggage at a nudist colony.
The emotional difficulties of having CF are many. I worry about each doctor's appointment. What am I going to tell my family if the results are poor? How am I going to cope? Will I have to spend more time doing IV's or extensive treatments? What's the newest antibiotic and where will it fit in my 40-pill rotation?
The emotional difficulties with traveling are there too. What if I forget a certain medication? What if my therapy machine stops working (it's happened before)? What if I get sick? Where is the nearest hospital?
It's also difficult knowing that since the day I was born that I have had a very low median life expectancy compared to the people around me. When I was born, my median life expectancy was 12 years. So that means my mid-life crisis would be around the age I was learning to ride a bike. That means I was considered elderly in grammar school. Sadly, it signifies that I would die just as I was entering high school. That just seems crazy to me.
When I was dating, CF was tough to hide. Every night before a big date, I used to do my therapy early and hide my machine in case the girl came home with me. Every night I had to take my pills by hiding them in my hands and swallowing them when she would go to the bathroom or order her food. With every relationship came the big CF talk which I never looked forward to bringing up. Fortunately, I ended up with my soulmate, Andrea, who accepted me for me and not the guy with a lung disease and poor sense of humor. I added the poor sense of humor part but I don't think Andrea would disagree nor would any of my other friends or family for that matter.
Now as a parent, CF provides a whole new worry for me. What happens if my kids get into my pills? Andrea was smart enough to create a lock box that they can't get in. Still sometimes I leave my bottle out unintentionally yet Avery and Ethan understand everything about my meds. In fact, when Ethan sees my pill bottle out, he grabs it and gives it to me. He's only four.
What will my kids do if I don't make it to see them graduate, go to college or get married? I worry about this but it doesn't usually hit me unless I'm at a doctor's appointment or I'm feeling really under the weather.
How much time do I have to make a difference in their lives? I am 39 so I have passed the current median life expectancy of 37 so I like to look at life as if every day I have is icing on the cake. I was not supposed to be here. Still every day is an opportunity to make a difference in my kids' lives.
How do I explain to them about the disease that daddy fights everyday? That's a tough one but I have explained a little to my kids. I think they get it to an extent. My daughter is 6 going on 35 so she may get it better than many people my own age.
CF is also difficult financially. I am fortunate to have great insurance but the price of my machine is the equivalent of buying a car. My meds cost thousands of dollars a year. Between sputum cultures, pulmonary function tests and bone density tests, I spend several thousand dollars annually. Andrea and I spent several thousand dollars on each of our In Vitro Fertilization attempts in order to have our children. I am also fortunate to have a full-time job and make money that way. Most people with CF do not have the strength to have full-time jobs which makes the financial constraints an even greater burden.
I go to a psychologist and a psychiatrist for my anxiety and depression. I believe that I experience these two components because as a child I had to grow up very fast. I didn't go to the doctor and think about getting a lollipop or a sticker. I had to worry about sputum cultures and chest X-rays.
What's it like to have CF? Challenging. First off, CF affects my lungs. Some days it's like breathing through a coffee straw. Many CF patients end up getting lung transplants. I'm hoping to avoid it by working out every day but I know that doesn't mean my lungs won't get worse. CF also affects my digestion. I'm constantly taking pills to aid with this issue. CF affects my reproductive system. My wife and I had to go through In Vitro fertilization because of me (98% of CF males are infertile including myself). Having CF means I also have very smelly stools. I sweat excessively though my dog Magic loves to lick the salt off of my arms and legs. I am more prone to getting colds and having them last longer. I have a better chance of having colon cancer. I can get CFRD (Cystic fibrosis related diabetes). I have a better chance at getting osteoporosis which requires annual bone density tests. I already have osteopenia which is the step before it. I have a hiatal hernia and acid reflux. Also, having CF, means it is very difficult to gain weight. I take supplements to gain weight though I don't take them as much anymore as I am at a healthy weight right now. Most CF patients have extreme difficulty keeping their weight up. Thanks to all of these problems, I also deal with the emotional issues I mentioned above - anxiety and depression.
Having cystic fibrosis is not a walk in the park but I repeat that there are worse things in this world. I am fortunate for many reasons. I have a family that can financially support my issues and who loves me very much. I live in a country that I have the ability to get many of my meds through an on-line pharmacy through my wife's amazing insurance. I have very supportive friends who look out for me.
I wonder quite often how I would adjust if CF is one day cured. These are some of the questions I'd have.
What would it be like not to have to take a pill bottle everywhere I went? For as long as I remember, I've carried a pill bottle with me.
What is it like not having to worry about getting germs from other people at all times? I feel sometimes like the boy in the bubble. When someone sneezes, it's like I'm in the movie "Outbreak" and have to run away.
What is it like not having to plan my days around my treatments? I'd be more than willing to do more household chores in exchange. Andrea, stop smiling.
What is it like during a storm not having to worry if the power goes out that I will have to stay up until the power is back on or go to someone else's house so I can finally do my treatments? I'd rather worry about finding a flashlight or having to deal with the A/C going out like most people who lose their electricity.
What is it like to have every doctor's appointment not be a big deal? I feel like each quarterly appointment is make or break. It's stressful. I've heard that most people have annual appointments only. That would be so nice.
Thanks for taking the time to listen to this. If you have cystic fibrosis, I hope it made you feel better that someone else empathizes with you and what you go through. If you don't, please know that I'm not saying that what you deal with on a daily basis is any easier; it's just different.
One funny CF-related joke I was just thinking about. One time my buddies and I were talking back in the day when we were single and we asked each other what 3 things we would wish for if we were stuck on a deserted island. I don't remember the specifics exactly but it went sort of like this.
One guy said "Britney Spears, a 6-pack of beer and a big screen TV."
Another guy said "Jessica Alba, a keg of Miller Lite and a lifetime subscription to Playboy."
My answer was simple.
"My therapy machine, a lifetime supply of meds, a working generator so that my machine would always work...and Britney Spears."
They were generous enough to give me the option for a fourth thing!
What's it like having cystic fibrosis?
DIFFERENT!
I hope all of you are living your dreams and loving your life.
Andy
Before I begin, there are worse things in this world than having cystic fibrosis. I also want to be clear that I am lucky compared to most people with CF. There are many people with far worse symptoms and who deal with quarterly hospital visits. I've been more fortunate. This is not a pity party. I have been truly fortunate in my life and I want you, the reader, to be aware of that before you go any further.
Also, I just had my most recent appointment (Friday August 31st). Some of my numbers were down and others were up. My doctor said she could basically tell that as a whole I am quite a big stronger. I also had my annual blood tests (picture enclosed). I had to give 12 vials of blood at 9am and then another vial of blood at 11am. I could not eat from midnight the night before until I had my last vial taken at 11am. I also had to drink an orange drink that tasted like a very sugary Sunkist. It was not pleasant.
Still I was satisfied with the results but not ecstatic. I always expect better. Like most people, I'm my worst critic.
Having cystic fibrosis (CF) is in a word, different. Every morning I wake up and have to do 40 minutes of treatments which include my vest and two aerosol treatments. I do them anytime between 5:30am and 6:30am. Following my treatments, I usually work out for 30 to 40 minutes and then I either do my TOBI treatment which lasts 40 minutes or I get ready for work and do my TOBI treatment in the car with my portable machine (I call myself the superhero known as "THE NEBULIZER DRIVER"). Prior to my TOBI treatment, I go through my pills and pick out 12 pills for the day (13 on Mondays, Wednesdays and Fridays when I take Zithromax which is an antibiotic) plus my 20 to 25 pills for pancreatic digestion. I have to make sure I bring my pill bottle with me to work or anywhere I go every day or I have to go back home and get it. It's not like CVS or Walgreens carries the pills I take. I get them from an on-line pharmacy. Every day before I leave for work, I make sure I grab my wallet, my cell phone, my keys and most importantly, my pill bottle.
At night, I have to do the same treatments except I don't have to do my Pulmozyme aerosol unless I'm sick. During the day, my mind can be consumed with when I'll find the time to do my night time treatments yet still get time with my kids and wife and yet still not go to bed near midnight. It's tough to balance sometimes. When my kids go to bed, I want that time to spend with my wife. The latest I usually do my treatments is around 9:30pm. I find myself watching TV, answering e-mails, writing my newest blog or playing X-Box during my treatments.
Traveling with CF is in a word, time-consuming. I have to pack about 40 pills for each day that I'm gone plus I bring an extra day of pills in case there is bad weather or something comes up where I cannot make it home at the expected date. I also bring 3 to 5 nebulizers per day depending on if I'm on TOBI that month or not. I also have to bring my vest therapy machine, my aerosol machine, my inhaler and all of my sinus meds. So for a 7-day trip when I'm on TOBI, that's 40 nebulizers (including the extra day just in case), 320 pills and all of my nasals meds, aerosol meds and machinery. Yes, I still have to bring clothes though I would probably be have the most luggage at a nudist colony.
The emotional difficulties of having CF are many. I worry about each doctor's appointment. What am I going to tell my family if the results are poor? How am I going to cope? Will I have to spend more time doing IV's or extensive treatments? What's the newest antibiotic and where will it fit in my 40-pill rotation?
The emotional difficulties with traveling are there too. What if I forget a certain medication? What if my therapy machine stops working (it's happened before)? What if I get sick? Where is the nearest hospital?
It's also difficult knowing that since the day I was born that I have had a very low median life expectancy compared to the people around me. When I was born, my median life expectancy was 12 years. So that means my mid-life crisis would be around the age I was learning to ride a bike. That means I was considered elderly in grammar school. Sadly, it signifies that I would die just as I was entering high school. That just seems crazy to me.
When I was dating, CF was tough to hide. Every night before a big date, I used to do my therapy early and hide my machine in case the girl came home with me. Every night I had to take my pills by hiding them in my hands and swallowing them when she would go to the bathroom or order her food. With every relationship came the big CF talk which I never looked forward to bringing up. Fortunately, I ended up with my soulmate, Andrea, who accepted me for me and not the guy with a lung disease and poor sense of humor. I added the poor sense of humor part but I don't think Andrea would disagree nor would any of my other friends or family for that matter.
Now as a parent, CF provides a whole new worry for me. What happens if my kids get into my pills? Andrea was smart enough to create a lock box that they can't get in. Still sometimes I leave my bottle out unintentionally yet Avery and Ethan understand everything about my meds. In fact, when Ethan sees my pill bottle out, he grabs it and gives it to me. He's only four.
What will my kids do if I don't make it to see them graduate, go to college or get married? I worry about this but it doesn't usually hit me unless I'm at a doctor's appointment or I'm feeling really under the weather.
How much time do I have to make a difference in their lives? I am 39 so I have passed the current median life expectancy of 37 so I like to look at life as if every day I have is icing on the cake. I was not supposed to be here. Still every day is an opportunity to make a difference in my kids' lives.
How do I explain to them about the disease that daddy fights everyday? That's a tough one but I have explained a little to my kids. I think they get it to an extent. My daughter is 6 going on 35 so she may get it better than many people my own age.
CF is also difficult financially. I am fortunate to have great insurance but the price of my machine is the equivalent of buying a car. My meds cost thousands of dollars a year. Between sputum cultures, pulmonary function tests and bone density tests, I spend several thousand dollars annually. Andrea and I spent several thousand dollars on each of our In Vitro Fertilization attempts in order to have our children. I am also fortunate to have a full-time job and make money that way. Most people with CF do not have the strength to have full-time jobs which makes the financial constraints an even greater burden.
I go to a psychologist and a psychiatrist for my anxiety and depression. I believe that I experience these two components because as a child I had to grow up very fast. I didn't go to the doctor and think about getting a lollipop or a sticker. I had to worry about sputum cultures and chest X-rays.
What's it like to have CF? Challenging. First off, CF affects my lungs. Some days it's like breathing through a coffee straw. Many CF patients end up getting lung transplants. I'm hoping to avoid it by working out every day but I know that doesn't mean my lungs won't get worse. CF also affects my digestion. I'm constantly taking pills to aid with this issue. CF affects my reproductive system. My wife and I had to go through In Vitro fertilization because of me (98% of CF males are infertile including myself). Having CF means I also have very smelly stools. I sweat excessively though my dog Magic loves to lick the salt off of my arms and legs. I am more prone to getting colds and having them last longer. I have a better chance of having colon cancer. I can get CFRD (Cystic fibrosis related diabetes). I have a better chance at getting osteoporosis which requires annual bone density tests. I already have osteopenia which is the step before it. I have a hiatal hernia and acid reflux. Also, having CF, means it is very difficult to gain weight. I take supplements to gain weight though I don't take them as much anymore as I am at a healthy weight right now. Most CF patients have extreme difficulty keeping their weight up. Thanks to all of these problems, I also deal with the emotional issues I mentioned above - anxiety and depression.
Having cystic fibrosis is not a walk in the park but I repeat that there are worse things in this world. I am fortunate for many reasons. I have a family that can financially support my issues and who loves me very much. I live in a country that I have the ability to get many of my meds through an on-line pharmacy through my wife's amazing insurance. I have very supportive friends who look out for me.
I wonder quite often how I would adjust if CF is one day cured. These are some of the questions I'd have.
What would it be like not to have to take a pill bottle everywhere I went? For as long as I remember, I've carried a pill bottle with me.
What is it like not having to worry about getting germs from other people at all times? I feel sometimes like the boy in the bubble. When someone sneezes, it's like I'm in the movie "Outbreak" and have to run away.
What is it like not having to plan my days around my treatments? I'd be more than willing to do more household chores in exchange. Andrea, stop smiling.
What is it like during a storm not having to worry if the power goes out that I will have to stay up until the power is back on or go to someone else's house so I can finally do my treatments? I'd rather worry about finding a flashlight or having to deal with the A/C going out like most people who lose their electricity.
What is it like to have every doctor's appointment not be a big deal? I feel like each quarterly appointment is make or break. It's stressful. I've heard that most people have annual appointments only. That would be so nice.
Thanks for taking the time to listen to this. If you have cystic fibrosis, I hope it made you feel better that someone else empathizes with you and what you go through. If you don't, please know that I'm not saying that what you deal with on a daily basis is any easier; it's just different.
One funny CF-related joke I was just thinking about. One time my buddies and I were talking back in the day when we were single and we asked each other what 3 things we would wish for if we were stuck on a deserted island. I don't remember the specifics exactly but it went sort of like this.
One guy said "Britney Spears, a 6-pack of beer and a big screen TV."
Another guy said "Jessica Alba, a keg of Miller Lite and a lifetime subscription to Playboy."
My answer was simple.
"My therapy machine, a lifetime supply of meds, a working generator so that my machine would always work...and Britney Spears."
They were generous enough to give me the option for a fourth thing!
What's it like having cystic fibrosis?
DIFFERENT!
I hope all of you are living your dreams and loving your life.
Andy
A little humor after a bit of embarrassment
So I had a speech in north Georgia this weekend and I met 3 great individuals who listened to my speech. Two of them had a relative with CF so it was great to hear their input. I sold a few books and donated some too.
Here is the only problem. There were more than 200 people at the overall convention and only 3 came to my speech. I drove 2.5 hours down to this speaking point from Gatlinburg where our family spent the weekend for Labor Day and where Andrea and I got to spend a night out for our 10-year wedding anniversary (thanks Manny for watching the kids). I was pretty frustrated that the turnout for my speech wasn't better and that several people weren't even aware of when and where I was going to speak but instead of getting upset about it, I have decided to turn to humor. Humor is what keeps us healthy both emotionally and physically and it has always worked for me.
I'm not giving out the name of the organization because I don't want to offend these individuals who put this event on. I'm sure overall the weekend went very well and I wish them success now and in the future.
So without further ado, here are my 25 stipulations for future speeches:
25. If my speech does not have enough attendees to fill out a lineup card, it's probably not a good sign.
24. If the number of attendees at my speech is small enough to fit at my kitchen table, it's probably not a good sign.
23. If I can count the number of attendees on one hand, it's probably not a good sign.
22. If when I ask if anyone has any questions and I actually have to say "Neither of you has questions?", it's probably not a good sign.
21. If in the middle of my speech I yell "Sexual Chocolate" and drop my microphone, it's probably not a good sign. (Image enclosed from "Coming to America")
20. If the attendees at my speech could get in my car afterwards to go have a drink, it's probably not a good sign.
19. If I don't need a microphone and in fact could even whisper my talk, it's probably not a good sign.
18. If I've seen more people in line buying groceries at 10 o'clock at night, it's probably not a good sign.
17. If I've written as many books as the number of attendees in the crowd, it's probably not a good sign.
16. If I can count the number of people in my audience by taking a quick glance, it's probably not a good sign.
15. If I thought I was getting a standing ovation but then realized that 1/3 of the audience was just stretching and his name was Larry, it's probably not a good sign.
14. If 1/3 of my audience is booing and I say get "him" out of here, it's probably not a good sign.
13. If I say that two-thirds of the crowd was late and only 2 people were late, it's probably not a good sign.
12. If I knew everyone's name in the audience within 30 seconds, it's probably not a good sign.
11. If I played tennis on the same court with my entire audience and it was referred to as "doubles," it's probably not a good sign.
10. If I go to a restaurant with my audience and the hostess says "Table for 3?", it's probably not a good sign.
9. If the number of hours it takes to get to my speech is close in size to the number of people in the audience, it's probably not a good sign.
8. If I have as many fish tanks at home as people at my speech, it's probably not a good sign.
7. If my son's age is greater than the number of people in my audience and my son is in pre-K, it's probably not a good sign.
6. If I have as many meals in the day as the number of people in my audience, it's probably not a good sign.
5. If there are as many "Back to the Future" movies as people in the audience, it's probably not a good sign.
4. If 2/3 of my audience lives in the same household and they were not part of the Duggar family, it's probably not a good sign.
3. If I add up the number of people at my speech and my calculator spits out "HA HA!", it's probably not a good sign.
2. If the number of people at my speech divided by one is a single-digit number, it's probably not a good sign.
1. And finally, if someone leaves to go to the bathroom and I have to say, we'll just wait till he gets back before I continue, it's probably not a good sign.
Subscribe to:
Posts (Atom)