Tuesday, September 25, 2012

So it begins...

Tomorrow is the first of several doctor appointments I am not looking forward to. Tomorrow I see my infectious disease doctor. He is great, but it can be a battle to get the iv antibiotics I need. The ID doctor i see while i am admitted has completely different philosophies on treatment then my outpatient doctor. My hospital ID likes to hit these infections with the strong iv meds and usually more then one at a time, which I prefer. My outpatient tends to use the milder antibiotics, saving the strong stuff for major infections down the road. Once the bacteria becomes resistant you are pretty much screwed. However, this infection has been very bad and lowered my lung function dramatically, so this is a major issue. What also hurts me is that in the middle of my out patient therapy, I was admitted and they changed some things around. Now, 10 days later, I have to go back to the outpatient ID doctor, so they will want to go back to being more conservative. All of these problems stem from my insurance company not accepting my in hospital ID as a outpatient. Now I still could see the in patient doctor but it would be another $2500 out of pocket annually plus the office fee of $80 per appointment they require. Since I see my ID like 30 times a year, that's way to much to pay out of pocket. I have been on antibiotics for 1 month straight and there has been improvement but I still need the hard stuff. I had told my outpatient ID doctor I believed this was a severe infection and that it would be at least 2 months of antibiotics, it once again looks like I am right.
The key here is that patients know their body, and I know what's wrong and how long it takes to recover. In case anyone is keeping score I have been right on every diagnosis I believed I had since this all started. The hard part is getting the doctors to realize this before the results confirm it. Those few extra days of treatments that I know will work before the tests come back always benefit me in the long run. So tomorrow will suck because I will have to plead my case to continue my therapy, but I will get it, and will continue to recover. Thursday will be the tough day, seeing my pulmonologist and figuring out a game plan for this up coming lung transplant. I will continue to fight, and never give up. I just hope my brain can handle all the bad news and stay strong. I just want to live and watch my son grow, and grow old with my wife...giving them both all the love I can in the process. I can't write into words how much my love for them grows day by day, and how much it hurts knowing that one day CF will win. I just hope it's not until I am 80.

Sunday, September 23, 2012

Getting back into the action, slowly.

It has been a long 3 weeks of being sick, getting nothing but bad news, and being off the water. However, I am feeling pretty good and I am hoping I can do at least one charter this week. I will never get back to being able to fish everyday with these beat up lungs, but I would feel a lot better being able to fish at least a few days a week. Next week I have several doctor appointments to get things in place to begin the lung transplant evaluation. I will also be setting up appointments with several lung transplant centers in Florida, starting with Mayo Clinic in Jacksonville. Then possibly in Gainsville at Shands, and if necessary look out of state like Baltimore or North Carolina. Today is the first full day of fall, and I am excited to start seeing some cooler temps. Cooler water temps will get those bass feeding up for the winter months. Although I haven't been on the water, I can tell you from experience the fish will begin schooling on shad in the morning hours. My years of fishing in October and November have brought many of my clients some big fish with top water baits fishing shallower waters 4-7 ft in areas with hydrilla that does not come up to the surface. I am also going to add some additional fish attractors over the coming weeks. The ones I had placed last year should start seeing some action as I placed them in shallower water. I finished adding all the LED lights from Blue Water LED to the boat, so this baby lights up like a Christmas Tree now. I love it !!! Also Next month I am going to have a small fundraiser for a friend that also has CF and is going through the steps to have a lung transplant. More details to follow. So if your coming to Orlando in the next few weeks and want to go fishing, I am back so feel free to call me.

Saturday, September 15, 2012

Getting out of the hospital

Its been a long emotional week for me. Having the abdominal pain, lung infection, and being told it's time to start the evaluation process for a lung transplant. Also was diagnosed today as becoming a type 2 diabetic, which requires to keep track of my sugars and take medication. It will however allow me to gain more weight and could improve lung function. We also discovered a micro tumor in my pituitary gland which is causing my body to produce low testosterone. Once the tumor is shrunk through a medication, I will to see a increase in my energy levels and maybe gain some muscle back.

I am glad to be going home and hopefully have the boost needed to gain more weight and start working out to get some lung function back.

It could be a very tough couple months and we are at probably the most serious time of my life, where I will need a transplant or I could die.

So as of today, I have to take over 20 different medications daily, spend 1- 1/2 daily on breathing treatments, eat at least 5,000 calories daily, plus while on iv antibiotics spend 6 hours a day infusing these meds.

I am just glad to be going home tow my wife and son. I want many more years with them.

Monday, September 10, 2012

The blog that gives me life

I wear my heart on my sleeve and living through these high and lows has really impacted me, flooding my system with unimaginable emotions. This past month I was hit with a bad cold, that quickly became a bad lung infection. For several days I couldn't sit on my couch doing nothing and still i was short of breath. After changing some meds around, I quickly felt better, but after lung function tests, my lungs are at 21%. On top of that I have been battling constant abdominal pain. Yesterday I surrendered to the hospital, for some much needed pain relief. Today, CF has become all to real for me. Today I met with Orlando's lung transplant doctor, and was told now is the time to start the lung transplant evaluation. I knew this day would come, I wished is was 5-10 yrs from now these talks would start, but the time is now. It's staring me in the face, and what I see in the future months and how I feel I can't put into words. I know I need to strictly focus my efforts on me for a change.

I am not sure what tomorrow will bring, but what I do know is that I have the entire support of my friends and family. It has been extremely hard for me to realize that its very possible that I may not be here for the two people that are my reasons for living, the two people that have given me the greatest 10 yrs of my life. My amazing wife, best friend, soulmate Michele, and the little man that has changed the meanings of so many things in my life Casey.

From the moment I first met Michele, 11 years ago, I knew immediately she was the love of my life. Her beauty, intelligence, how she always had a goal in life, and her loyalty to her family and career amazed me. Michele was the type of girl I was always to afraid to ask out. It was during the ambulance corps installation night we danced together for the first time, and during that dance, I was so nervous, but it felt so perfect, after that dance everyone said Kevin you two look like you were made for each other. It took a few more days to gain the courage to call Michele and asked her if she would like to join me and hit a few buckets of golf balls at the enclosed driving range. After that afternoon, things just began to fall into place, but of course CF had to get involved. I became very sick and hospitalized several times during the first months we started dating. I was scared she would break up with me once she learned how serious CF is. I have been dumped before because of CF, but Michele didn't run, she stayed next to my hospital bed, everyday then, and everyday now. I was even more nervous when I asked Michele's parents if I could marry their daughter. I have always known CF eventually would get the best of me, and so did Michele's parents. They knew how much she loved me, and they told me how loyal she would be to me. Like they said, she has been amazing, and really what has kept me going these last 11 yrs.
It has not been a fairy tale life, we had our highs and lows, but my love for Michele has always grown stronger over time. I said then, and still do today everything I can to take care of Michele.

Like I said, I loved Michele immediately because she was so goal driven. We married each other with the hopes of starting a family, we also understood with my health sooner would be better then later. If I was going to become a father, I wanted to get as many years with our baby as possible. Things didn't happen as planned, health reasons on both sides, plus several failed IVF's it delayed our time table. Adoption was really our last shot, and knowing that CF could delay or end our final chance to have a child. I was very unsure about the idea of adopting, plus I didn't know how we would pay for it. Some how Michele knew; she knew someone would pick us, and she knew we would come up with the costs. Less then a month after filing the paperwork, Michele got the call that again would change our lives, and again bring us closer together. In two months, I went from being difficult about the whole idea to holding this little blond hair, blue eyed boy, my son Casey Daniel Przybyl. These 3 years have flown by, but have been the best days of my life, I love my family so much. It's all because of the greatest women in the world, a women that no matter what happens to me she will be by my side, and always their for Casey. Tomorrow is another day, a day that will have ups and downs, but it will end and Michele will be who holds this family together and strong. I love you both more and more ever second passes. If the worst does come, I will always be at Michele and Casey's side.

I am not sure what's next but I will do everything I possibly can to love, laugh, breathe, and live happily ever after with the loves of my life Michele and Casey.

Tuesday, September 4, 2012

Bling, because I can

Life is short, so I have to say what made me laugh last night....every once in a great while, I look to see what the competition is doing. I really do not worry what other freshwater guides do, especially since I fish on a private lake, and I never see anyone. I have to say, I got a good chuckle from some of what I saw. Since I started, I have been harrassed by several guides over my low prices, and how I do things. I get harrassed, because I am young, and that I am from the North (as they put it). I havent received any calls or emails in a while. But when I get something, I take it as a badge of honor. I must be doing something right since I am still in business 8 yrs later. Anyway it made me laugh seeing them try and copy what I have been doing since day one.I used that positive energy to help me get through what I expected to be a bad day. I can't express this enough, I share my story about Cystic Fibrosis to educate and make awareness to a horrible uncurable disease, not to get pitty. Just this past month we lost a friend and young man that my foundation was helping to this awful disease, Eric was only 13 yrs old. Today I had to face the music and have lung function tests done to see where I stand. Like I figured my lungs have become worse, very bad actually. In March 2011 my lungs functioned at 35%, today it was 21%. I inhale with both my lungs, less then 1 liter of oxygen. A normal person or even a smoker of 30 yrs takes in 3-4 liters each breath. This would normally set off major alarms with the doctors, it sure did with me. This should have led to hospital admission, 24 hrs a day on oxygen, and a emergent appointment with the lung transplant team. However my doctor came into my room, without seeing the results, and said "you look really good". I chuckled and said you didnt see the tests yet, he then looked and reassured me that yes this is a serious infection, but there is no permanent scaring on the lungs from xrays back in 2011. He believes that with the aggressive treatment plan I am on, I should gain all this lost lung function back. I took this as a sign; I have dedicated most of my life to helping others, today I realized I need to dedicate my time towards my treatments, so I can continue to take care of the two most important people in my life; my wife and son. With this being said, I will take another few weeks to focus on my health, not fishing. I am hopeful I can join my friend this Sunday to fish a tournament, but I am not going to push my recovery.I haven't totally eliminated fishing from daily schedule. These past few weeks I added some Bling to my boat. I didn't get anything free from these guys, and I don't promote businesses unless I think they provide good customer service and a good product. That said, if you are looking for some boat bling then check out the LED kits from Blue Water LED. The kit included lighting for all my cabinets, livewells, deck lights, and even trailer. It will help in the early mornings and when I fish night tournaments, but honestly I did it because they look really cool. There are several photos below, and please check their website www.BlueWaterLED.com Thats the update for now, hopefully I can get back on my feet here soon.

Saturday, September 1, 2012

Holy lung infection Batman!

Wish I knew how the fishing is, but for the last two weeks I have been battling the worst lung infection I have had in 9 yrs. I could not even walk from room to room without being short of breath. This past Thursday my doctor and I decided it was time to pull the trigger and use the strongest iv antibiotic as possible to get rid of the pseudomonas growth causing the infection. As CF patients age and get lung infections, the bacterias that cause these infections become resistant to antibiotics. This particular infection only has two antibiotics it's not resistant to. We were using the intermediate antibiotic Merrum but it wasn't doing a thing. So we called in for the hard stuff. I thankfully am feeling a little better each day, I was actually able to walk around home depot without oxygen and without being short of breath. I am hoping these improvements continue!

We did get a lot of rain from issac but it brought some slightly cooler temps, I mean like from 98 degrees to 94 degrees, but that little change will lower the water temps to where the fishing will get back to normal. I am disappointed that I can't do charters this holiday weekend but hopefully I can resume fishing next weekend.