Friday, December 21, 2012

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 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 for Christmas but back on my B-day for two more days next week.

Saturday, December 8, 2012

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 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.