Jan 14, 2021 Latest post:
20 hours ago
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
After being misdiagnosed for 8 years, Wayne was diagnosed with Apha-1 Antitrypsin Deficiency (Alpha-1) in 2008. Alpha 1 is a genetic disorder that manifests by creating emphysema even if the individual has no smoking history. There is no cure and it is a progressive disease. For the last 13 years Wayne has received weekly infusions of the alpha-1 protein which he believes slowed down the progression of his disease. In December 2016, Wayne prematurely retired from his consulting business of 22 1/2 years due to his declining health. In addition to his own business, Wayne worked as a Patient Advocate with the pharmaceutical company that manufactured his medicines. He met with doctors across the country to encourage them to test COPD patients, he conducted seminars for 2 State Respiratory Associations to bring awareness of the disease. Most importantly he offered telephone support to fellow Alphas. He jokes about the fact that he's always had a desire to be a model, but a pharmaceutical company was not what he had in mind! For the last 8 years, Wayne has spent a lot of time by giving back to the community helping people with various addictions. He also serves as President of the Board for a Meditation Foundation which provides a refuge for people nationwide (with 2020 being the year of Zoom Retreats there were a few international participants!) His beautiful smile and un-selfish desire to help others is a gift to all those who come into contact with him.
After going through extensive testing and consultations, Wayne has agreed to be placed on the Lung Transplant List at the recommendation of his Transplant Team. As of this date, Wayne is "waiting for the call" which could come any day but was told it would probably be within the next 2-3 months. Post surgery Wayne will need a caretaker 24/7 for 3 months. His friend Ashley is coordinating this effort. Many of those that have already agreed to help, work during the day so Ashley is seeking help during the day. If you are a friend of Wayne's and could help, even if it's just one day, please contact Ashley by signing up on the "how Can I help" button. A lung transplant is not a cure. It is actually trading one illness for another. Wayne will need to take numerous immunosuppressant medications every day for the rest of his life to minimize rejection and infections. The cost of some of these medicines are extremely expensive and not covered by medicare. He will also meet his out of pocket medical expense every year for the rest of his life in addition to expenses like copays that do not contribute to out of pocket expense. He is uncomfortable with asking for help as he has generally been the one giving so freely. Any donations received will be placed in a fund that may only be used for Wayne's medical expenses. Any unused funds, will be donated to a nonprofit to promote organ procurement. Wayne also encourages his friends to become organ donors. One donor can save the lives of 8 people!