Never Forget 9/11/01

It is a day I will never forget! Where were you on 9/11/01? Every year since 9/11 I have tried to honor those that have died, this year I want to spend it on the water. If you are a Police, Firefighter, EMT, Paramedic, or Military personnel I invite you to come out and bass fish with me. You will receive $50 off your charter on 9/11/14 - 9/14/14. Contact me at kpsfishing@yahoo.com

ICAST Orlando 2014

Fishing has slowed down slightly as the surface temperature of my lake has gone up to 87 degrees. The stronger winds last week were mainly coming from the northeast and really slowed the schooling fish. However bigger fish 4-6 lb range have been hitting sinkos and flukes which wasn't the case two weeks ago. I am expecting the fishing to be exactly what it should be during this time of the year....a slower bite, requiring a slow retrieve with the baits, and slightly lower numbers, usually a single angler will land around 10-15 bass in four hours using artificial. ICast 2014 is coming to orlando in two weeks and I do have a few early morning charters that week available. I am located just 10 minutes from the convention center. Please contact me if your interested in a 4 hour charter.

Summer Bass fishing in Orlando, FLorida

The Florida largemouth bass are in full summer pattern mode on my lake and its only the beginning of May. The last few weeks the temperatures have topped in the 90's during the day and low 70's overnight, which caused a rapid water temperature increase. In a matter of 5 days the surface lake trigger shad both using 10 lbs fluorocarbon with a medium rod. Another key to my recent success on the water has been the result of fishing small areas usually a square 100 yards at a time, painfully slow. Fishing these areas this slow is producing many bites and catches. I will fish an area this size for up to 2 hours at a time. In recent days my clients are averaging no less then 15 bass in 4 hours. This bite will continue to improve over the next several weeks then steady out until mid-august when the water temps are extremely high. temperature went from 72 degrees to 81 degrees. This past week it was obvious by how the fish were biting that the spring turnover was occurring. The bite was sluggish last week but this week the bite has improved dramatically. Also experiencing a dramatic increase in the amount of schooling fish feeding on bait fish throughout the day. This has made some great top water action for some of my clients, and honestly , myself. The majority of the larger fish I am catching has been on a "KP Craw" xtreme stix , a hand poured, sinko, style bait made by Cache Custom Lures. This particular color has been my go to bait for several weeks now. When I come across schooling bass, I have been switch to just a simple XPS popper or a Cache Custom Lure

Awesome bass fishing and awesome lungs

It's been a rough 6 months, a lot of ups and downs with my health post double lung transplant. However I am super excited to just have had my 6 month Bronchoscopy and the report from my doctors that the transplant and lungs are looking great and for the first time since my transplant I will not need weekly bronchs. In fact, the next one is planned for July, I am really just excited about that. 

This also means I can do what I love, Bass fish and do my fishing charters without having to worry about tests and procedures. I know there will be more bumps in this road, but I hope for a few months I can just enjoy the gift I was given.

So let's talk bass fishing. I have been on the water a lot these past few weeks after having to take a month off from transplant complications. The bite has been great, I am defiantly getting people on numbers...usually 20 fish in the boat in 4 hrs. My go to bait for most of my fishing guests are flukes or sinkos, weightless with 10 lbs test fluorocarbon line. I work areas have hydrilla very slow and in depths around 8-10 ft. I will fish an area about 50 square yards for a hour or more at a time, especially if we are catching fish. Working are area that size that slowly is producing a lot of bites. The issue has been getting the big fish to bite. I have managed at least one trophy size fish per charter, it's something that I honestly expect to occur until mid-May. The weather has still been unsteady and keeping the water temps into the low 70's. These temps are causing some of the bass to spawn late, while some are post spawn and just not feeding, and a third of the fish are already in a sum my pattern, feeding constantly on shad and already schooling on shad on the surface. 

I had believed the spawn was over on my lake, I had a lot of big fish in February, which is the normal peak of the spawn for this lake, but these past two weeks I have seen a ton of new bass beds all over the lake. I have been fishing lake Bryan for 5 yrs and have never seen these bass spawn this late. The bigger fish we have been catching have had marks on their tail and many even bleeding from the tail. Usually a clear sign they are clearing off beds, these bedding fish are bedding along slopes that drop down to 15-20 ft, and seem to be on the slopes in 8-10 ft. So I can't see the beds, but just they way they are striking the baits it's pretty obvious they are bedding fish. 

When the winds are calm, I have been seeing bass schooling on shad pretty much all over the lake. This usually doesn't occur until the water temps heat up in June so when it does happen I try and use some top water baits just to see the fish strike top water. The fishing will continue to be great, so if your coming to Orlando take some time to enjoy some of Florida's great Bass fishing.

The true physical test passed today!

It has been just about 18 months since I last fished from a boat. 18 months away from doing something I have had a passion for since I was a kid. It's been less then 3 months since my transplant, and only since Thanksgiving since I regained mobility in my left arm and foot. After doing everything I could do so far in physical therapy, and honestly exceeding even their expectations with my recovery; today I put it to the test. I fished 4 1/2 hours on one of my best friends boat on Lake Cypress. A lake I haven't fished in years.... It was a cool, gloomy, and windy day on that water but I must have made over 400 casts....and without any fatigue, or pain. Even as I type this out 8 hrs later, I still feel great. 

Fishing was horrible, but 3 hrs into it, bam! I land a 10" bass on a xtreme stix. I set the hook harder and better then I have ever before....it was the greatest feeling ever. My friend Don the followed up with two more maybe 13" bass, and it was starting to get dark. 

It was all the proof I need and in two weeks I will have my first charter, some clients I have taken every year fishing but last year because I was so sick. 2014 will rock for fishing....and I am hoping for some pretty amazing opportunities that I have been perusing for a year start to take shape and happen. 

Happy New Year Everyone !!!

Wrap for a Cause

Fresh Ink Signs and Graphics in Orlando will be installing a new boat wrap for Orlando Trophy Bass. The main focus will be designed to raise awareness about Cystic FIbrosis and the importance of becoming a organ donor. This Sunday Fresh Ink Signs and Graphics will be holding a event with free food and beverages, the opportunity to watch them install the boat wrap, and members from Translife Florida and Florida Hospital Tranaplant Center for you to learn about becoming a donor and even signing up to be a donor. 

Join us from 11 am until 5pm at 

Fresh Ink Signs and Graphics

207 N goldenrod Rd #100

Orlando, FL 

Changes have and will continue to happen

A lot has happened these past few weeks. I have deactivated my listing for a double lung transplant with the Mayo clinic. I am only listed now with Florida hospital transplant center. I really do not believe this decision will impact me in a negative way. I am still on the top of the list at Florida hospital, and deactivating my status at the Mayo will not impact my standing on the national list. In fact I am more confident then ever with the entire team at Florida hospital. They are a smaller and newer center, but the surgeons have combined over 30 yrs of transplant experience. If anything, having a smaller center means I know exactly who will be doing the surgery and because there are not hundreds of patients being seen by these doctors, I am getting faster answers and action when I have a health related event happen. I will also be able to recover from my house, so all the issues and concerns we had about having to relocate are no longer a issue. Since I deactivated my listing, I have had a huge weight lifted off my shoulders. I will now be able to focus on my recovery instead of worrying about the dozens of major factors with having to relocate to Jacksonville. 

Last week I was asked by Florida hospitals PR team to do a live interview on Orlando's Fox 35 morning show. The story was focused on getting more people to become organ donors, and then I was interviewed live in the studio about what it's been like having been waiting for lungs. Here's a link to the story http://www.youtube.com/watch?v=Jp9FUrL5I20

It's been one full year since my doctor made the official request for a lung transplant evaluation. So doing that interview really reminded my wife and I what a fight it has been. It also shows how strong we are as a couple, it's not always perfect but I wouldn't have made it this far without her fighting CF right beside me. It was a nice morale booster, I have been a little down lately because we are getting close to the 9 month mark of waiting

Honestly this process and these past 12 months have really shown me what love really means, and what friendship really means. People have really shown their true colors to my wife and I, and I can say I have already begun reevaluating who and what my priorities will be in the near future and post transplant.  

One thing I can tell you will continue is what this website and blog was intended for....fishing. I will come back to fishing once I am recovered enough. Since I will look healthier and feel better I will be changing my boat wrap and logo around. Start fresh, but it will still be the great fishing and lake I was on. Having better health and even more confidence with my fishing abilities, will make for a great experience for my clients. I have been working on technique, learning more about large mouth bass and their habits, and some fun stuff other charter captains won't be able to do or just don't do. I hope to have to initial design work done this week, so keep an eye out for some updates. 

Like I say at the end of all my entries, hopefully this surgery happens soon. 

Week 10 and no call

Well, I am still waiting on that call for my double lung transplant. It has been such a emotional 10 weeks for me. The entire day is spent wondering if today is the day and thinking of the future plans I have. I only get a few hours of sleep every night, mainly because I can't fall asleep or I wake up in the middle of the night worrying that I missed a call while I was sleeping. It's a continuous cycle since the day I was listed and I understand 10 weeks really isn't that long of a wait, but it seems like its been a 10 years. Physical activity in the smallest amount is exhausting, and being a person that has had a job since he was 14, this not being able to contribute very much financially but more physically even around the house has been pure hell. I continue to hope this call happens today, if not today, hopefully tomorrow.

Week 2 of waiting

Another week has past and no phone call yet. The anxiety is running high in my mind. Sleepless nights and long days laying around trying to gain weight and not doing anything too physical that would burn major calories. Each passing day, I have become more and more in favor of the whole idea of getting new lungs. my fear of waking up intubated plus massive pain is still there but again I am ready for it. I am ready to start a whole new chapter in my life, and once the pain subsides my goal will be get into the best physical shape as possible, so i can finally play with my son, and to restart the job I love of being a fishing captain. It will be better then ever! I want this surgery right now, so I can be back on the water by later summer, and prepare for the busy season and hopefully start fishing some serious tournaments.

Hopefully that call comes soon, but not like at 2 in the morning....I am hoping for a morning or afternoon call like before. Driving 3 hours at 2 am might be rough. Thanks for all the support and emails, I love to get them. Thank you !

First dry run

This past Saturday we were shocked when the mayo clinic called at 2pm requesting us get to the hospital as they may have a donor for me. We quickly grabbed some things, I told my son how much I loved him, while crying at the same time. I told him it was time for my big surgery and that I loved him more then anything...the look I got back made me realize my 3year old son knew what was happening. Thought he was going to cry, he just hugged me really hard. During our 3 hour drive we ran into heavy traffic and of course a major road shut down on i95 for a brush fire...40 min detour...but somehow my wife showed she has her driving skills from her days as a EMT. We arrived at mayo at 5pm. We were immediately sent to our room in ICU, where iv's we started, X-rays, blood work, iv antibiotics, breathing treatments, and more. Met many members of the team and my nurse. Who was awesome! I had so many emotions flowing through my head I couldn't cry, laugh, or really talk, I just looked at my beautiful wife and remembered all the good times since we met 10 yrs ago. She is my rock and the one that will keep me moving forward after the surgery. After many hours of waiting the surgery was set for 10pm, and the staff coming to move me to OR at 935. I was pretty ready, but five minutes before the time, the team doctor came in with bad news. After viewing the donors lungs, they determined there may have been issues with the right side and therefore canceled the surgery. They call this a dry run. I call it another anxiety attach waiting to happen. Going through the drive and the emotions will be hard again. I am looking forward to all the amazing things my body will go through after surgery, but not looking forward to the initial pain and being intubated when I am waken up. So we are home back on the list waiting for another call. God bless the teams and the donor and the donor's family!

Officially listed at number 1

As of this moment I have been actively listed for my double lung transplant. Currently I am number 1 on the small list at Mayo clinic. This means at any moment we could be called to start heading to Jacksonville. My emotions are all over the place, can barely focus on one thing let alone the 100 things we need to get in place right now. I am full of fear, excitement, and sadness. The not knowing how this will end and knowing very well when I say good bye to all my family it could be the last time. It's been rough already but the ride in will be a long 3 hrs.

Time to pack.

Still more tests

Well it's February and again I still have several tests and consults to complete before I will be considered for a lung transplant. This has been a very long and emotional process that was started back in December and was supposed to be completed in two weeks. I manage my disease very well and always stay ahead of the curve so having these delays, and major communication issues with the Mayo clinic really has me down and losing hope in the entire process. I was told last week that they will not even consider doing the surgery until my weight is 130 lbs, I have never weighed more then 105 my entire life. Since my lungs are only function at 22%, I am on oxygen full time and this poor lung function means my body is burning through thousands of calories per day just on breathing. Currently my intake is 6,000 plus calories per day, eating more is just not possible. I am looking into different facilities that will be more willing to roll the dice on the surgery, but my insurance will not cover it until mayo makes a final decision. That decision will not likely come until May.

Meanwhile I am trying to get on the water on a limited basis but as much as my mind and heart want to fish, my body physically won't allow it many days. I am doing all I can to make charters happen, but it is a day to day deal, so booking in advance is tough because I am not sure what will happen tomorrow let alone a month or two out. So for those that are calling, thank you! I won't leave people hanging, if I can do the charter I will, if not I will put you in the right direction to someone that can take you fishing. Thank you all for your continued support and patients with me!

Big improvements and was granted a true honor

I am orrigiankly from Buffalo, NY. I grew up there and worked most of my EMS career in a small town of lancaster and villages of depew. Today, I was honored by my former volunteer ambulance corp with the status of Life Member. This was for 10 years of service from 1995 when I was 15 years old to 2005. I gave my heart and soul to providing the best possible care to those in the villages of Lancaster and Depew, and town of Lancaster as a EMT working my way to Paramedic by age 20. I volunteered thousands of hours during these 10 years, and responded to hundreds of calls. There have been so many people over the years that i have admired and tried to learn everything I could form. They all molded me into the person I am today. Especially the following members by squad number 19, 22, 28, 58, 78, 85, 150, 207, 221 , 287. Those years were some of the greatest years of my life. I am proud to have saved many people but will never forget all of those that couldn't be saved. LVAC was not only where my career in EMS was grown, it was the place that I met my wife Michele Glinski Przybyl for the first time 10 years ago. Over the past 10 years she has been my best friend and my rock, and I could not imagine my life without here. Thank you board members of the LVAC for for granting my the honor I wanted to work towards from day one. It has truly been an honor to serve!

As for fishing....Friday will be my first day on the water since late November. My health has improved that I should be able to do a charter here and there. I am excited the water is very warm which means the spawn will be in full swing....big fish either shallow or really deep in 30 ft drops. They will be biting crazy Friday. The weather is so well set up for a successful afternoon.

Two weeks ago I could not walk to my couch to my bed....and today I had pulmonary rehab and tomorrow fishing. Hope I can keep the health up and weight...gained 6 critical pounds this week...15 more to go by mid February then hopefully I will be listed for my lung transplant.

2013 will decide my future

Another year has come fast, and honestly I am not prepared for what will happen or may happen in 2013. My health being on the front burners and will be all year. I believe this year will be do or die for me. My disease has come to the fork in the road, will I get my lung transplant or will I become to sick for surgery and potentially slowly fade away in a hospital bed, like many CF patients I have known over the years. The whole process has been grueling to say the least, not only on me physically, and mentally, but on my family, especially my wife. Not enough credit can be given to her, because she is what is my drive to stay alive. She also is the quarterback of the team, making critical decisions though out this part of my life. Pre, during surgery, and post surgery decisions are all made by her. A roll i knew she could handle, i just wish it was later on in our lives, but its not. CF has shown its evil face, and despite 33 yrs of fighting the batlle, it is beginning to show the signs of how it's winning the war on my body. Each new test, shows how slowly and damaging Cystic Fibrosis is, and no matter how compliant and careful I have been, it didn't totally keep the disease from causing a lot of internal problems that may not be able to be repaired. My overall role continues to be very painful, but easy. My wife Michele has the hardest job of managing my post transplant care, which is months long and 24/7. She will still maintain her job, as she is the main bread winner of the family, and she must also play both roles as a parent and homemaker. Again, my job is easy in comparison, and every day I realize more and more how awesome and amazing she is. If this surgery happens and I am given this new lease on life, it will be spent taking care of her as much as I can for the rest of my life. I know what she has to see and what the disease is doing to me physically and mentally. I am changed from this experience but from what i hear about other CF patients going through similar situations. It has been very difficult to see people do well and see people die, because right now, i am one of those people, and it tears me up wondering which statistic will I be when it's done.

There still remains several days at mayo for testing and hopefully in a month or two, I will know more and if I will get listed at the mayo.

As for fishing, it really is on hold. Now I do have a few charters scheduled and will be doing my best to make them happen. Fishing is very hard for me right now, because I am on oxygen full time. Anywhere I go I need my oxygen tanks, even taking a shower takes time and a lot of energy, so you can image the physical strength needed to hook up a boat and launch it into the water. There are days I literally have not energy or desire to even shower, because the poor oxygenation of blood in my body just wears you down. This has been the hardest think to grasp for me. My entire life has been go go go, a infection here and there with a few weeks of being sick...and I would be good to go for months...now I am on iv antibiotics going on 4 months straight. It's frustrating because I love fishing, and I love what I have accomplished with this business. I beat the odds, and took more crap from older local captains over the years, but despite their hate, I prospered and made great friends and memories doing it. Oh, yeah, The business name, website, trademarks...all protected for a very long time, long enough that my son will be able to do with it as he pleases. (sorry this really is to spite my haters)..What I miss, all the people I have met. I am trying my hardest to continue taking out those that have returned to fish with me year after year. It's never been about making big money or having the biggest baddest truck or boat, it's about touching the people that love the sport but love sharing it with a loved one, son, daughter, mother, father, husband, and/or wife. That's what's important, and hopefully God will allow me to continue my work here, so I can show my son the true meaning of life, and what really is important.

So to everyone checking out my site. Email me, tell me when your looking to fish, and I will give you honest answers about the fishing, and my health. As usually I take no deposits, and if something happens that will not allow me to do the charter, I will give you plenty of notice and hopefully guide you to someone that can help you . I will also be giving updates on the transplant as they happen so stay tuned.

Week two of transplant eval

Hello everyone

I am back in Orlando now after completing week 2 of 4 weeks being evaluated for a double lung transplant. This week was fairly easy, no major procedures but a lot of consults. The biggest one was our last consult for the week. I met with the GI doctor, mainly to discuss issues with my GI track. Other then changing some meds and other stuff to start gaining the weight I need to have the surgery, the main topic was my liver.
What was really discovered from several tests last week, is my liver is very enlarged and damaged. It's not from drinking...I don't drink. The damaged is because mucus has blocked many veins going into the liver, and inflammation from lung infections have caused major scarring to the liver. Although there is a lot of tests to be completed, there is a very good chance I will need a double lung and liver transplant.

We also learned that I will need someone with me 24 hours a day for at least 2 months after the surgery. The strong combination of meds and their side effects could cause several scenarios to happen, and if something does occur, my doctor needs to be notified immediately. Then they will make changes to my meds, and/or have me go to the ER.

Also learned many other things...like always sitting in back seat of the car for the first 3 months. Zero raw foods, like sushi or oyster, can't share food or utensils, separate towels, etc. Just a lot of little thinks the average person would never believe.

As for fishing...same remains, it's day to day if I can do a charter, and I really can't book to far in advance since I don't know when I will get listed.

So that was a little of this week...off for Christmas but back on my B-day for two more days next week.

Very important guiding info / the beginning of my transplant journey

Please read if your looking to book a charter....

I have not done a blog for almost a month. A lot has been occurring this past month. My friend and one of the founders of my foundation, Erin Taylor returned home for the first time, just three months after her double lung transplant. She is doing so amazing...go Erin. I am also pleased to announce that another board member to my foundation, her son had his double lung transplant 36 hrs ago and Is recovering at a unreal rate.

Next week I begin my transplant evaluation in Jacksonville, FL at the Mayo Clinic. I can tell you how much I am freaking out but that still would only cover half of my anxiety and flat out being scared. We hope to have the eval competed by Christmas. The evaluation is extremely packed all day for close to 2 weeks as a outpatient. So the expenses of hotels and gas, food will begin next week. We have to stay in a hotel because Jacksonville is 2 hrs -3 hrs each way. I am will feel better once this eval is done.

Once the eval is complete a review panel will look at the results to see if I am eligible to receive them, and they will see how long I can go with the lungs I have before the do the surgery. Longer the better.

Just because I am having the major surgery, it is NOT, repeat NOT a cure. In fact, i currently take over 17 medications per day, several times a day. Plus have a feeding tube to assist with eating and taking in over 6,000 calories a day to maintain my weight. Now transplants lead to major followups, pain meds, anti rejection meds...so I will probably be in the 20 pill mark after the surgery.

As for fishing, I have not been out lately because of this eval coming up and me fighting another lung infection. Now that the eval starts next week, I am hoping to fit a charter or two in before the New Year. The weather had been above seasonally warm, and the big fish are already in per-spawn patterns. So if this continues the major portion of the spawn will be end December and January, just like last year.

I am trying to get better enough to do some charters...those that I have already contact about late December and January charters, my deal is still on. So once I get a schedule from the hospital I can give you all some dates. Those that are looking for charters, please contact me anyway, so we can discuss your details, and I will tell you if it's possible.

I really hope everyone has great holidays and again please email or call if you have a rough idea of when you here I Orlando.

Felt good to be back out 11/7/12

Today was the first time fishing since early August. My lungs are slowly improving but now where near what they where at 3 years ago. I will be stating the lung transplant evaluation on Dec11. It is a 10-15 day out patient study that involves several invasive procedures. That means this will finishe Christmas Eve or after, wont know until our first day. But it's a 3 hour drive to Jacksonville so we will have to pay for a hotel for a week or so.

Having not been on the lake in so long was such a wake up call for me. I love fishing but love seeing people catch fish is better. The hydrilla in the lake has exploded and is starting to over take it, so they will be doing some spraying and adding 900 grass carbs this week. This forced me to fish deeper then normally, but it paid off with Kathy from Ontario as she landed this 7 lbs 5 oz bass mid morning. Not bad for not being on the lake more .

Also on a very sad note, I learned of the sudden, unexpected death of a friend on the lake Biff. Biff was one of the few that did not sell their private property to hotel owners. He was already wealthy from his boat repair business he sold years ago, and retired in his early forties. I spoke to him October 16... He died possibly that night or right after in his bed while he was sleeping. Very sad to see him gone, he did a lot to help me with my boat and business.

I hope do get a few more trips before thanksgiving but I need to try and take day by day.

Below is Kathy from Ontario and her trophy bass

Still not fishing

Well I had hoped that this month I would be back on the water at least part time doing some charters, but not so. I am however starting to feel better a little bit each day. Currently I am starting week 2 of being on insulin for my newly developed Cystic Fibrosis Related Diabetes (CFRD) diagnosis last month. I have noticed a difference in how I feel, but it is taking longer for my body and my blood sugars to adjust. My blood sugars are still on the high end despite taking the insulin. This will take a few months to get regulated. As for my lung infection; I was placed on a second IV antibiotic last week, and I have noticed a huge difference with having less of a cough, and feeling better in general. The only issue remaining is becoming short of breath very easily with any exertion. Some days are better then others, but I am still not able to do what's necessary to launch and finish an entire charter. My health care team is hoping this will improve once I start respiratory rehab. This is week 3 of trying to get started with the Rehab facility. It took two weeks for them to call my doctor and I back on a start date. So I have my initial evaluation Wednesday, and then hopefully start this Thursday. They are playing games with starting saying there is no room and it may take until December to get me started. This honestly has me and my doctor pissed off because patients being evaluated for a lung transplant are supposed to get priority even if it means bumping someone. So hopefully this therapy starts next week at the latest. This will hopefully give me that boost I need physically to get back to doing charters. So I am sorry to those who have called and I cannot take out, but I hope to those coming this fall, I can make these charters happen.

Orlando transplant doctor appointment results

Some good and bad news from today's appointment with the Florida transplant doctor. Bad news: I need to do the 2 week evaluation process sooner then later. My fev1 which is the main number used to define lung function is at 22%. When this number stays below 30% for a year that number will more then likely not go back up. So I am close to being under the 30% mark for a year. The only shot at increasing this number will be through Pulmonary rehab. This will be critical for me to gain as much function back as possible, and this week was wasted thanks to the rehab facility not calling me or my doctor back after a week a calling them. So because they are only there Tuesdays and Thursdays, the earliest I can start will be a week from now. He also said is that this transplant will have to happen no matter what at some point, we are all hoping later then sooner. Also not having the evaluation done, and one bad infection could land me into the ICU and having to be intubated on a ventilator. At that point, I would not be able to complete the evaluation phase, and would likely die shortly after.

The good news: despite being at 22% he would not list me right now, because I can still do some physical activity and not in need of oxygen full time. That being said, i do need oxygen at night, during longer walks, even doing things like cleaning the house. Pretty much anything I do physical for more then 6 minutes, my oxygen level drops into the low 80's unless i have the oxygen on. By allowing my oxygen to drop this low, it causes more damage to my heart and could mean that at some point I would need a lung and heart transplant. So I always need to have it nearby and use it when I feel short of breath, even if its just for a few minutes.
Another good thing is that while I was admitted three weeks ago, a good majority of the testing needed was completed. So other then some more blood work, some X-rays, the only major procedure is the heart cath test, which is the worst part of the eval. Other then that it is a matter of finding a team and facility I like and I feel I will have the best chance with. Then it's meeting with all of that teams people and working out the financial aspects. Still a lot of work, but the two week eval could only be a weeks worth. I am still waiting to hear from Mayo clinic which should hopefully be next week to schedule the initial visit. Depending how i feel with Mayo, i still might meet with the entire Orlando team. I had a better vibe meeting with Dr. Pelaez today then I did during my admission a few weeks ago. He was very honest and answered everything we asked. The only thing holding me back on going with them is that the team has only done 3 transplants together. They have many many surgeries combined just not together here in Orlando. The doctor also said that I do need to gain some weight, I am hoping to add another 15 lbs plus some muscle mass. He was happy to see my abdominal pain was better and that I also started insulin. My osteoporosis is also severe, and must be addressed, but my endo will do a IV medication next month to help improve that almost immediately once administered. The side effect to that med is usually severe joint pain for several days after the infusion.

So.... I did have some relief after today but overall it is a lot of bad with some good....I am still pretty much depressed, scared, and trying to come to terms with a lot of stuff. Those feelings are not going to ever change, it is only going to get harder as time goes on so I have to learn how to manage all of that stuff. I am eager to start rehab and bust my ass hard to gain as much lung function as possible. I have also realized that rehab is not going to be a short term gig, but something I will and willing to have to do for the rest of my life. I have come to terms with the realization that I can no longer do a million things like I used to; running a business, foundation, and being the best father and husband as possible. I know my limits now, and those limits mean i cannot please everyone all the time like I have over the years. Everything I do from this point needs to be in my best interest so I can be around for Michele and Casey as long as possible. They are what gives my life meaning and purpose. So the foundation will have to stay on the back burner until I can find someone to run it, fishing will have to stay next to it until I can gain some lung function and muscle to be able to load and unload the boat from the trailer. I need to work out, and rest a lot. Just getting Casey ready for school in the morning and getting him there wipes me out. Playing with him for an hour even wipes me out, so until I can do that stuff all day, everything else will have to wait. So thanks for all the help from those that are and for all those prayers. I will still need a lot of both for a long while.

Endocrinologist day !!!

Today i saw my endocrinologist..Dr. Damon Tanton out of celebration hospital. He is amazing, has a vast knowledge about CF and CF related Diabetets., Such young talent that really knows CF and the benfits insulin, growth hormone, and testosterone gel can have a positive affect with CFtreat diseases aggressively if the patient can handle it. That is a rare find.

Ok so I just administered my first shot of and feel a little odd,. Next I
must test my glucose when i wake every morning and then before bed. Just another medication to the 17 i already take daily.
Before I start my night feedings, I must check my sugar and regardless of the level, I then take 10 units of Lantus SoloStar insulin. Super scared of how I am going to handle the medication itself. My D-stick was just 102. I gave the 10 units and now in bed hooked to my feedings and drinking a can of boost. Hopefully My levels don't tank and I wake up with Fire/rescue looking at me. Once they find out where I worked, they will start recruiting me. Or I don't wake up at all . This is supposed to help build up muscle , lung function, and ass weight. Can't wait to what happens in a few weeks,