The beat goes on, my journey.

23/03/2023

I have such a wonderful heart team both in Gainesville and Jacksonville. Waiting for them to setup appointment for a full diagnostic heart cath and a meeting with the transplant surgeon in Gainesville.

19/07/2022

So today I got the phone call I have been waiting for from Gainesville. I did not make the transplant list as my CPET and heart cath both looked good, and the risk of surgery outweighs the possible ouutcome. However, there is hope on the outcome, they talked to me about a clinical trial. It will be a generator about the size of a fifty cents pieces and will wrap a thin wire around my vagus nerve (the nerve that controls many of your organs) and it will send impulses to slow my heart down. When you are in heart failure your body produces a hormone for fight or flight, this will operate as a brake. They are accepting two out of three patients for the trial. Once again thank you all for your positive thoughts and prayers. Weather any storm and keep moving forward.

05/07/2022

Telemedicine is so amazing. Just had my last doctor appointment this afternoon with the transplant surgeon in Gainesville. He was able to show me my CT scan and let me know that if I do get a transplant I should have enough room for them to work. Now Dr. Parker will take all my information and present my case before the panel and they will make a decision. The testing and appointments have been a very long road and I know I still have a very long way to go, but I want to thank everyone for your thoughts and prayers for me and my family.

19/06/2022

Still waiting on a couple more appointments and for all my tests to come back. While I may not be growing enough food to keep our house sustained, the therapy I receive from watching my plants grow and start to produce is amazing.

31/05/2022

I have not forgotten about updating my page, we are waiting on my doctors in Gainesville to get the rest of the test information. I will give a full update as soon as we get more information. Thank you once again for keeping me and my family in your thoughts and prayers.

24/05/2022

Are you a donor?

More than 100,000 people are waiting for a lifesaving transplant. Register today

18/05/2022

Two days of testing are now done. As it stands right now (I will have to see another specialist) it will be a heart and kidney transplant. Here is something we did not know, they leave you other kidneys in you body and put the new kidney behind your right pelvis everything is connected. Yesterday while waiting for blood work I saw a volunteer that warmed my soul, I did not get a chance to go talk to her but she looked so sweet (picture below). The picture of me was taken during a quick lunch (apple juice and peanut butter crackers) right before our last meeting. To say I was and still am exhausted is an understatement. We now wait for Dr. Parker to present before the panel and they will decide if I go on the list and what status I will be.

16/05/2022

I was going to do a video update, but this boy is tired. The heart cath went well and we got done extra quick there, so we went down to the lab (13 vials later) we were done, so I was able to sweet talk radiology to get my CT done sooner. We went back to the hotel and had breakfast and relaxed in the room until our next appointment. The hotel here has a personal shuttle to take patients and guest back and forth to the hospital. When we arrived they told us we were in the wrong building so we caught a UF shuttle back to the other building. Guess what...we were at the right building. Finally got to where we were going they put me in an aquarium (that is what it looked like) and made me breathe into a tube and then I got on a bike and rode until I could not ride anymore. We have had dinner and it is really time for bed. Thank you all once again for your prayers and positive thoughts.

16/05/2022

Heart cath is done, they went through the neck and the procedure only took ten minutes. It took them longer to get everything ready then the actual procedure.

16/05/2022

Good morning everyone, we hope that you had a good night. Look for another video update later today. Thank you all for everything.

16/05/2022

Pictures from our hotel window last night of the moon.

16/05/2022

Since I could not bring any of my boys with us to Gainesville, I brought Boba Fett Bear.

15/05/2022

We made it to Gainesville. I will try to do video updates as much as I can down here. Thank you all for your thoughts and prayers during this time.

10/05/2022

At the age of sixteen I made a choice to become an organ donor and possibly help someone in need if anything were to happen to me. There was a young lady that went to Bishop Kenny a few years behind me that made the same choice to help others. She passed away and her organs were donated and saved lives, her name is Katie Caples. Her parents still live in the area and started The Katie Caples Foundation, I encourage everyone to read her story http://katiecaples.org/. Then please go to https://www.donatelife.net/ and read the stories there. If you are not an organ donor please consider it and if you are thank you.

Donate Life America is a nonprofit organization increasing the number of donated organs, eyes and tissue available to save and heal lives through transplantation while developing a culture where donation is embraced as a fundamental human responsibility.

05/05/2022

Today I was blessed to see my daughter get pinned for nursing. I am so proud of her stepping into a field that sometimes gets forgotten. During my time in hospitals the nurses have always been the best and I know that she is going to be just as great as them.

04/05/2022

So yesterday was my first appointment for this journey, I spent an hour on a Telemed call with the psychology department. They asked me all kinds of questions from my health to growing up. After that appointment I got my itenerary for my two days in Gainesville, and while I will be doing a Cardio Pulmonary excercise test, I feel like with all the running those two days it will be a stress test as well. Thank you all for your kind words and thoughts and prayers.