Coughing Is Fun

This has been a struggle. I am getting nervous that I am going to be nowhere near ready for this half marathon. After my last post I went to the gym and was able to do 3 1/2 miles on the treadmill and I thought “wow, my body is already adapting and getting back to shape.” I went back the next day and I couldn’t do a mile without having to walk. It has been like that ever since. A few days later the weather was in the low 60’s here so I took my run outside. I ran/walked 4 miles. That was tough. It was more walking than running. Lots of coughing. Almost threw up about 8 minutes in because of the cough. Had a woman turn around after passing me to make sure I was alright. She was being very nice but I don’t think I will ever not feel embarrassed when I cough like that. Well, embarrassed, annoyed that I have to cough so violently, angry that I have the disease, tired of constantly fighting the disease. I could keep going here but I think you get the point. Coughing sucks and every time it happens it sets off a chain reaction of emotions.

Went running on Saturday and haven’t been since. On Sunday I woke up in the middle of the night and threw up and then had a fever all day Monday. Slept on and off the entire day. I could barely move. Fever had broke by Tuesday but was still wiped out. Today is the first day I have had an appetite and a bit of energy since Sunday.

Spring cannot get her soon enough!

I’m feeling a little down about all of this today. Don’t really know what to write. Perhaps my trip to the gym will help pull me out of this funk. Off I go, wish me luck.

CF SUCKS!

Thanks for reading.

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Back In The Saddle

I have not been feeling great the past few weeks. I have woken up coughing several nights, have coughed up blood, my mucus seems thicker, my lungs feel tight and my overall energy has been low.  So yesterday I went to my doctors. I was fully intending to have my doctor tell me it was time to go on IV. As I always do while travelling to my doctors on the subway I went through the last few weeks in my head in order to give detailed information on my health. I take an inventory of when I think my health started to go south and what has taken place since that time. I traced it back to about three weeks ago when I started waking up coughing in the middle of the night. Let me tell you, that sucks having to get out of bed, go to the bathroom and have a 10 minute coughing attack. Fun nights. Anyway, it also occurred to me that around that time my prescription for Albuterol ran out and I have been too lazy to get a refill. How lazy, you ask. Put it this way, the pharmacy is a half block away from my house and I walk past it everyday and I still didn’t get the prescription refilled! Come on, it’s been over three weeks! So I tell my doctor all of this and an amazing thing happens. My PFT were just around normal so she says she thinks we should start on a course of Cipro and I should start taking Symbicort for the tightness. She says that usually when I am ready for IV, I look sick and she said I look healthy. Sweet! I took some Symbicort and filled my prescription for Albuterol and began coughing like crazy yesterday. Tons of junk came up, even a few small plugs. Today my lungs feel much better and with a renewed sense of energy(perhaps a bit psychological because I avoided IV) I hit the gym to start training for the New Bedford Half Marathon. So use my stupidity as a lesson, don’t forget to renew prescriptions even if you think the medication isn’t that important, which is how I felt about Albuterol. Oops, I was wrong about that.

As I said in a previous post I am running the New Bedford Half Marathon. Training started two weeks ago, I however did not start training. I have been extremely lazy(See above). Not completely lazy, I have been going to the gym, doing elliptical and the wall climber but running has been nonexistent. Which is kind of sad because the weather in NY has been relatively mild and I should have been taking advantage to run outside.

So today started my official training for the half. There will be a new set of challenges awaiting me for this training. One is going to be motivation. What will be motivating me to get out and train on those days when I don’t feel like running, which I have to say there are many.For the marathon it was easy, I was motivated by the distance, could I conquer 26.2 miles. Well for the half I can’t use the distance because I know I can run 13.1, I did 26.2 for crying out loud. I can’t use speed because I am not fast and never will be fast. So I have settled on my health. I saw a significant boost in my PFT’s when I started training for the marathon so I know it is beneficial to run. I seem to cough more plugs and more crap from running than any other form of exercise. I think the pounding acts as a form of chest PT. It’s like an extended vest treatment without having to sit next to some noisy machine.

The other challenge is going to be that it is winter and most of my runs will probably have to be indoors on a treadmill. I have said it before, I HATE running on a treadmill. Music,  television, it doesn’t matter, nothing helps me to pass the time. It is a mental struggle from the time I push start until the end.

I found today that the same issues were coming back from when I started the training for the marathon. Self conscious about all the coughing I was doing, and not having stamina to run the entire time. It is back to square one, the old run/walk method. When I say square one I mean, run two minutes and walk two minutes. It is exactly like when I started the marathon training. At least I know that if I stay diligent in my training I will build the stamina back. I just hope that starting training so late still gives me enough time to rebuild the stamina and doesn’t do me any harm. Whatever, I will be crossing the finish line in New Bedford no matter what.

More than two months  after running the marathon I am still receiving so many kind emails and comments from people. I just want to say that I have read them all and have been moved to tears. Your kind words and your encouragement is what will push me through on this next challenge I have issued to myself.

CF Sucks!

Thanks for reading

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Insurance Fun

So the other day I get an ominous looking envelope in the mail. Having a bad feeling I hesitantly open it. My instincts were right, it was a bill from a collection agency for $2975.69. It seems that Blue Cross Blue Shield(BC/BS) paid for medication that they shouldn’t have. In an earlier post I mentioned that I was having insurance trouble, well I guess I’m still having insurance trouble. I called BC/BS to find out what this was all about.

ME: Hi. I got a bill from a collection agency saying I owe you $2975.69 for Tobramycin that I ordered on 5/18. What is this about?

BC/BS: Yes. You ordered the Tobramycin on 5/18 but your insurance was terminated on 5/15.

ME:Well, why are you coming after me for this money? Shouldn’t you be going after the people you actually gave the money to?

BC/BS: That’s not how it works.

ME: Did you try and get the money from the pharmacy that you sent the money to?

BC/BS: No sir.

ME: That makes no sense. You gave the money to an entirely separate entity and now you want it from me. That’s like if  I gave your father money, then I wanted it back but was making you pay.

BC/BS: Well sir. Did you receive your medication?

ME: Yes. Is that what this is about? Medication? So, how about I order the medication and when I get it I can send it to you? If the medication is what is important,will that satisfy you?

BC/BS: No sir. That’s not how it works.

ME: I still don’t understand how I am being asked to pay for this when you guys, unbeknownst to me, cancelled my insurance then paid for my medication. It was your mistake.

BC/BS: Sometimes it takes our computer a few days to update.

ME: Well that’s not my fault that you have terrible software that works slow.

I wait for a response but only get silence on the other end of the phone line.

ME: So because you guys made a mistake and didn’t update your records fast enough, I am the one who has to pay.

BC/BS: Yes.

ME: Great. Thank you, you have been absolutely no help.

You ask, ‘Hey Kevin, how did you let it go so long that the bill went to collection?’ Well I’ll tell you, the first few letters I received after being terminated from BC/BS were telling me about a great program they offer that I qualify for since I have CF and am one of their clients. ‘But I am not one of your clients’ I thought to myself.  So I stopped opening the envelopes from them after that. I figured the letters were all saying the same thing. They have a history of sending the same letters over and over. Especially when it was time for me to get a new ID Card they ended up sending me 6 separate cards. After the fourth card with accompanying booklet arrived at my door I called them and told them to update their system and stop sending them. I received two more cards and booklets. Prompting me to call back again and tell them that 6 ID cards and booklets were sufficient and that I didn’t need anymore. They finally understood me, or maybe it just took their system that long to update. You know those pesky computers just do whatever they want without warning, especially those insurance company computers.

Dealing with insurance companies is one of my least favorite things in the world. They are in the business of supposedly keeping people healthy but when you find yourself dealing with them they never seem to have any compassion at all. There is so much red tape that needs to be cut through in order to get the care that you need. Do they understand that the stress they put people through affects their health and potentially gets them sick? Thus creating more bills for them to cover. Oh wait, they don’t care because when they start paying more medical bills they just raise the premiums for everyone.

Just another fun thing that goes along with having a chronic disease. OK my rant about insurance is done. Thank you for allowing me to vent. I needed that.

I have been taking advantage of the mild weather here in NY and been running in the park. Short little 2 milers around the lower loop. Lungs feel pretty good, but I am coughing a lot when I am out there. Some major plugs came up the other day immediately following a run. I went to bed that night feeling like I could breath easier. It was a nice feeling. For that brief time my lungs felt relaxed, open and I felt that oxygen was getting to places in my lungs that had been closed off for some time. I had a nice sleep that night.

I am dreading the upcoming winter. It will take some major discipline from me to stay consistent with the running when I am forced indoors. I need to start mentally preparing now so when it comes I won’t get lazy. Signing up for a race will force me to stay consistent. I’m thinking of running the New Bedford Half Marathon.

Off to do my inhalants. It’s not Tobramycin.

Thanks for reading.

CF Sucks!

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The Next Chapter

It has been exactly two weeks since I ran the marathon. It has also been exactly two weeks since I have done any form of exercise. The first week after the race was about recovery and making sure I didn’t get sick. Got through that then went on vacation to Turks and Caicos for a week. So you can’t blame me for not exercising, I had to relax on a beach and go snorkeling. There was one day that I played tennis so I wasn’t completely lazy.

Today I broke my lazy streak and went for a run in Central Park. It was a beautiful 65 degrees, the leaves are all bursting with color and the park was filled with people enjoying the last gasp of warm air before the arctic freeze. The leaves weren’t the only thing bursting with color, the mucus from my lungs was also very colorful. Started out light green for the first .80 then ended up dark red for the last 1.20. With the difficulty of this run today I have no idea how I ran a marathon. I started out feeling great for the first twenty strides then immediately wanted to stop. I pushed through that mental block and felt OK until I started coughing the blood. Blood was the last thing I thought I would be seeing today. It was a blow to my psyche. I’m kind of over this up and down crap. One minute feeling good the next your coughing blood. It really sucks. Anyway, I fought with myself to keep going. The first deal I made with myself was that I would push it to 1 mile then stop. When I made it to mile 1 I then talked myself into going another mile. Despite coughing the entire second mile and leaving a trail of blood like Hansel and Gretel I finished.

I feel like I am back to square one with my running but I won’t let it stop me. I am going to start looking for races to run. Something to give me a goal. It is amazing what one can accomplish when one has a goal and commits to it one hundred percent.

The reach of my story has kept on growing. Brandeis University has asked me to come and speak to their Genetic Counseling graduate students about my experiences. The program emphasizes the importance of learning about life with a chronic illness. The talk will focus on dispelling stereotypes. Hopefully my story will help a family or child learning of a CF diagnosis.  So now begins the next chapter of this blog.

Thanks for reading.

CF Sucks!

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The Aftermath

The NYC Marathon changed my life.  It is possibly the best decision I have ever made.  I have changed as a person, not just physically but emotionally and spiritually as well.  The outpouring of love and support has really been a testament to the kindness in humanity. Race day exceeded any expectations I had.  I am still processing not only the race itself but everything that has happened around the race.

Throughout the training people would tell me time and again “it’s about the training.” I would nod and say “yes, yes I know.”  But I never fully understood what they were saying.  The week leading up to the race when I was speaking with reporters (more about this later) about this “journey” it dawned on me that yes, it was about the journey. I’m not sure if I wasn’t asked to talk about it and really reflect, if I would have appreciated how far I actually came.  I have spoken to other CF patients about this and we have a tendency to ignore what we are really feeling like and just push on through and then before we know it we are sick and on IV.  The deterioration and clogging of the lungs is so gradual that each day we just accept that this is how we are feeling.  This is normal, nothing we can do about it so get on with it.  There is not much reflecting going on.  It is more about the moment and the future, however long that will be. So I was asked to think back to all the ups and downs, the struggles, the days I wanted to quit, the numerous times I questioned my ability to do it.  But I pushed through, with the help and encouragement of my now fiancee, and I did it. From having to walk to finish a mile to running 26.2, I did it!

As I said in my very first post, oh so many months ago on February 23rd this blog was intended to be as candid as possible about my experience having CF while training for a marathon. I never thought that it would go beyond my circle of friends who would be interested in running. Somewhere along the way my story got out. It has gone way beyond anything I ever thought it would be. I have said it before but it really has taken on a life of its own. I am overwhelmed and humbled by the attention this has received. The last few days have been a whirlwind. The story has taken off on the internet. It seemed yesterday that every hour someone was emailing me with a new link to a picture or video or someone else’s blog that mentioned me. There was even a blog that was from the perspective of my mother! I have been getting emails and donations from strangers telling me that I have inspired them or have given them hope for their child who has CF. It has been an extremely emotional few days. I am trying to wrap my head around and make sense of it all.

So about the race itself. I will go through mile by mile with a recap so I hope you like to read. Just kidding, I’ll give you the ESPN highlights. It was an emotional day all around. The first of many times I cried was walking up to the start, turning the corner and seeing the massive Verazzano arches. I thought “I am actually about to run a marathon.” The bridge was so fun to run but tough. I started coughing right away on the 1 mile incline. We got passed by everyone and so many runners would pass and say words of encouragement. Lots of love right from the start. Brooklyn was amazing, mile 4 my doctor, Emily DiMango, who I have raved about on the blog, was waiting there to cheer me on. Now if that isn’t the most awesome doctor ever then I don’t know what an awesome doctor is. She not only keeps me healthy and alive she comes out on a Sunday afternoon to cheer me on in a marathon! Also at mile 4 we met up with my good friends Terry and Wendy. They are the couple responsible for inspiring us to run a marathon. Their passion and enthusiasm for our endeavor was infectious and pulled Katie and I through many times.  Around mile 7 we took a detour into a friends house along the course and used his bathroom. Awesome! Don’t worry we didn’t cheat, this did not cut any distance off of our race it actually added some distance. Worth it. Mile 8 my family was there and much crying happened again, along with pictures. The rest of Brooklyn was incredible, friends who I had no idea were going to be out there were there cheering me on and pulling me through. Queens was where it started to get tough. Legs got tired, feet got sore, and coughing increased. Queensboro bridge was where I was able to tell Katie everything I wanted to say about how I felt. It was my proposal speech to her as we walked that dark lonely stretch. She had no idea what was about to come. More crying. Man I sound wimpy. That might be the last time I admit to crying for the rest of this blog. First avenue, so much love! So many friends along the avenue to cheer us on. Willis Avenue bridge is where I started to cough up serious blood. To the point where one runner got concerned and asked if I needed medical or water. I think I coughed on all of the inclines during the race but I pushed through. Had one more coughing fit as I entered the park and because of the severity was forced to stop for the first time. We turned the corner onto the final stretch and all aches and pains went away. I don’t remember feeling my feet hit the pavement. We saw so many friends on that stretch that before we knew it we were at the finish. There is a great video of me pulling Katie over to the side where I was going to propose. I will post when I get a copy. The rest is sort of a blur. I do know I got engaged, finished a marathon and got a medal.

When I started this blog, today was going to be my last post. I intended it to be about the marathon and my training from my perspective. I have to say that speaking publicly about my situation both to reporters and on my blog has been very therapeutic. Because of this I have done much soul searching and reflection and it has had only a positive affect. Since this has become something so much more I am not sure what to do now. I have officially become a runner so I will continue to run. But do I continue to write this blog even though I am not training for a marathon? Do I think about morphing it into some other platform about CF? Or do I just let it go and cherish the memories, the transformation and the journey?

There is still time to donate to the cause. By the way, can you believe I got engaged?!

To donate to Team Boomer, fight Cystic Fibrosis and help me reach my fundraising goal you can go to  http://www.firstgiving.com/fundraiser/kevindwyer/2011INGNYCMarathon

Thanks For Reading.

CF Sucks!

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Game Time!

So the day has arrived!  It seems like ages ago that I started this journey.   Each day I marked off the training on the overview of the entire training schedule.  16 weeks of training and there are no more boxes left to cross off.  It is game time!  I am nervous and excited and will finish this race come hell or high water.  I coughed up some blood today on the final training run.  CF just giving me one last little F-you before I kick its ass tomorrow.

The support these past few days has been overwhelming.  I am humbled by the beautiful article that was in the NY Times.

I love you all!  Thank you for all of your support, advice and encouragement.

It is time for me to get some sleep before I wake up and catch a bus at 5:45am out to Staten Island. Goodnight. If you see me out there tomorrow scream my name loud and know that you are helping me get to the finish line.

Thanks for reading.

CF Sucks!

 

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Last Minute Preparations

Training is all but over.  Tomorrow is a rest day so that means I hit the gym and stretch for an eternity.  Then Saturday is a quick mile and a half run then thats it.  Then it’s race day.

This week has been crazy. It seems that most of it has been spent making sure everyone who is coming to watch is all set with their plans.  This week was also my “media week”.  I did my interview for CBS Morning Show which will air on the Monday following the marathon.  It will run nationally so everyone will have a chance to see it.  I took some pictures at the finish line for the NYRR results magazine, and today I was interviewed by the New York Times.  The article will run in tomorrows paper.  I don’t really know how to respond to all of it.  I was just running to challenge myself and raise money for CF and now it has taken on a life of it’s own.  I am so happy that CF is getting the publicity and attention and hopefully some young person with CF will see it and be inspired to follow their dreams without feeling like CF will hold them back.

I went to the expo today and picked up my race number.  It was very exciting and somewhat overwhelming down there.  A bunch of vendors selling their wares, to the point where I felt like I couldn’t really focus.  I sort of aimlessly wandered around for about 45 minutes picking up random samples of energy bars and whatever else people were handing out.  I am picturing the race in my head all the time.  I am getting emotional about half a dozen times a day thinking about it.  Sunday is going to be an amazing day.  I predict lots of tears.  Tears of joy not pain.

My lungs feel alright.  Luckily, better than last week.  The way my lungs were feeling last week was making me a bit nervous; some blood, lots of thick mucus.  Not as bad this week.  Nothing else to do but extra airway clearance and deal with whatever they feel like on race day.

I want to thank everyone who has been following me through the training.  Your support and encouragement have been a great help in getting me through this.  I couldn’t have done it without you guys. I love you all.  I’ll probably blog before the race but I wanted to say it now.

To donate to Team Boomer, fight Cystic Fibrosis and help me reach my fundraising goal you can go to  http://www.firstgiving.com/fundraiser/kevindwyer/2011INGNYCMarathon

Thanks For Reading.

And don’t forget…CF Sucks!

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