2 long weeks

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

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

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

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

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



Making IV stand for I'm Victorious!

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

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

Here is my current schedule:

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

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

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

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

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

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

Best Wishes and good health to everyone,

Andy

A 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!"

Disappointing but not discouraging

I 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

Snow-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.

Andy

What'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

An update on my life

Winter is here and it is cold! Record low temperatures right now in Atlanta but things should warm up this weekend. I'm sure people in the Northeast and Midwest will make fun of us as a lot of schools were closed on Wednesday. Were they closed for ice all over the roads? No. Extreme snow? No. Any snow? No. We closed them due to frigid temperatures. Relax, I went to work so don't characterize me as one of those snow-fearing Atlantans.



It feels this cold minus the snow!

So it's winter time and I'm still trying to be positive. I'm trying to focus less on the cold conditions and more on the positive things going on around me. Avery continues to kick butt at gymnastics (picture below). Occasionally I pick her up from gymnastics practice so I get to watch the tail end of her practices. I can't believe the kind of shape she's in. I also try to go to all of her meets. I'm really proud of her because she's extremely self-motivated. The girl is more flexible than a rubber band.



She's a beast (I mean that in a positive way not in the Alec Baldwin sort of way)!

Ethan continues to enjoy basketball. The kid has an interesting scoring line through 4 games. 0 points, 8 points, 8 points, 0 points. I guess he's all or nothing like his dad.



If only the Atlanta Hawks had him, Philips Arena would be sold out every night.

Andrea is doing great as well. She has done an awesome job turning our new house into an actual home. We hung about 100 pictures the other day. I'm beginning to regret all of the sports memorabilia I've collected over the years.

It's still winter and regardless of how positive I am, there are moments when I get down. The important thing is that I recognize these moments and I make sense of them. My health is a little bit on the downturn. I'm currently on two antibiotics after just finishing my TOBI. The new TOBI podhaler I use saves me about 70 minutes a day of treatment time every other month HOWEVER I find it much more difficult to use. I tend to cough more when I'm on it and breathing the powder in is like nothing I have ever experienced. It's almost like swallowing a bug except I know it's coming and swallowing a bug is a bit more disgusting. Still I have to admit that I look really good. That's not a vain thing. That's not bragging and if it is sobeit. That's a pride thing. I've worked really hard. I'm up from 165 to 170 now and I now have a real 6-pack (one that's not in my fridge). My goal is to stay between 170 and 175.

Work is going well. For the 3rd consecutive year, DiversiTech had it best sales year ever. We are now in the Top 60 private businesses in Atlanta. As great as my job is (I'm the purchasing director by the way), I'm starting to think about what I want to do outside of DiversiTech. I love speaking and speak to benefit the Wish for Wendy Foundation and Cystic Fibrosis Foundation about a dozen times during the year. I am now starting to seek paid gigs and start a new business outside of the foundation. I'm still in the early stages of this but I already have some leads. I also thought about being a standup comedian but to be honest I am not sure being funny as a profession is for me. I am more corny as many of my friends will attest. My jokes are not that creative.

I don't really believe in New Year's Resolutions however I would like to work on being more fiscally savvy this year. I feel like that has always been one of my weaknesses. I don't spend a lot of money however I also don't invest it very well either. I'm already in the process of changing that.

Softball is over. I was thrilled that our team took home another title a few weeks ago. It's good to have a break though and I can focus on attending the kids' sporting events.

I'm starting to work on a new event at Wish for Wendy. Thanks to Ray Shelor (the grill master from DiversiTech), Andy Auchmuty and Peachtree Packaging, we are having our first ever Wish for Wendy Home Run Derby sponsored by Peachtree Packaging this fall. We are really excited about it but I'm still working out the details so it's not only fun but brings in a lot of money to help cure cystic fibrosis.



Join the hit parade!

I hope that all of you had a Happy New Year and that 2014 brings you many celebrations.

Best Wishes,

Andy

25 predictions for 2014

I was reading how some people put $100 to $200 bets on Auburn to win the national title before the season with 450 to 1 odds. All of them came close to winning some serious cash. I thought "What are 25 things for 2014 that I would definitely bet on if Vegas took any bet?" Well, here you go:

25. Taylor Swift will write another song about another ex-boyfriend who hurt her feelings.

24. There will not be a single sports title amongst the 3 Atlanta pro teams (if you want to include the Dream, 4) and at least one of those teams will lose in heartbreaking fashion.

23. Dancing with the Stars will feature a few stars but most people we've never heard of.

22. Georgia basketball coach Mark Fox will not have a job by May.

21. Justin Bieber will un-retire and will say it's because the fans wanted him back.

20. Miley Cyrus will do something controversial.

19. Paul Rudd will star in multiple movies.

18. A politician will have an affair that gets ugly.

17. Peyton Manning will endorse something new.

16. A former child star will go to rehab.

15. The Chicago Cubs will not win the World Series.

14. Roger Federer will not win a grand slam in 2014.

13. The Kardashians will be on at least 60% of magazine covers at your local grocery store.

12. Tiger Woods will win a Major.

11. Tiger Woods and Lindsey Vonn will get engaged.

10. Someone will claim to have found Big Foot but will have no proof.

9. A celebrity will come out with a sex tape.

8. Derek Jeter will announce that 2015 will be his final season.

7. Jennifer Anniston will find love...in the mirror.

6. This year's "The Bachelor" will be the most controversial season EVER per Chris Harrison.

5. Tony Gonzalez will return to the Falcons with a few games left to go after one last shot at a ring. They will fail.

4. Charlie Sheen will lose his kids and get them back.

3. There will be a re-make of a classic movie and it will suck.

2. Juan Pablo will propose on "The Bachelor" but they will be broken up by Dec 31, 2014.

1. And the number one thing I'd bet on in 2014, none of you will make a comment on this blog entry. Ha Ha! (If someone does, I reserve the right to change number 1).