In Decemeber of 2014, I noticed I had developed a continuous, very harsh cough that wouldn't go away. As the cough continued through the New Year, I made an appointment with my Primary Care Physician. I was given medication to help alleviate symptoms of this continuous cough which temporarily subsided until that summer. In summer time of 2015 I was mowing my lawn and could only make one pass as I experienced shortness of breath and had stop. I then was with my granddaughter and noticed I couldn't climb three sets of stairs without taking several breaks to catch my breath. I then KNEW something was very wrong and returned to the doctor.
At this doctor appointment, I had extensive blood work drawn, breathing function testing, and x-rays of my chest. The results weren't anything I was expecting. BOTH of my lungs had extensive scarring due to unknown causes. My diagnosis was Idiopathic Pulmonary Fibrosis (at no fault of my own). I was never a smoker, I was a health consious, active individual so this diagnosis came as a complete shock. Initially the Pulmonogist did mention possible lung transplant in the future but at that time he advised to be evaluated and follow up testing every three months.
Continuing to monitor my breathing and testing results through August of 2016, the results indicated a progression of the disease and need for a lung biopsy. Results of this lung biopsy showed expected results of the disease but as a result of the procedure ITSELF my cough worsened, I had very labored breathing and was placed on continuous oxygen therapy. This worsening of my condition prompted me to seek a second opinion at the Mayo Clinic in Minnesota. There, I had another bout of extensive testing and specialists concluded I NEEDED to get evaluated to be put on the transplant list for a DOUBLE LUNG TRANSPLANT ASAP.
After going to the Mayo Clinic and going though additional evaluation tests, I was placed on the transplant list at Froedtert Hospital in Milwaukee, Wisconsin for a double lung transplant. During this time, I tried to continue to work my business but was unable to because of my breathing, low energy levels and unable keep up with the physical demand of my work. I was then forced to sell the business I worked so hard to create and loved for 35 years. I also was unable to do the activities and sports that I loved so much..My life had completely changed to instead constantly going to doctors appointments, pulmonary rehab, etc. In November of 2017 I was able to also be placed on the transplant list at UW Health Hospital in Madison, Wisconsin.
In addition to the plies of medical bills for testing, blood work, pulmonary rehab, MRIs, CT scans and all the appointments I already have and am currently accruing, there will be post transplant medication and follow-up procedures.
Post transplant expenses are HUGE and FOR LIFE. Traveling to/from doctor visits, hotel stays, along with additional caregiving needs will be astronomical. I will also have to take many medications each day to make sure my body does not reject the new lungs which will be very costly and for the rest of my life. The first year after a double lung transplant is crucial. I must and will be a compliant patient and focus on getting well. This entire ordeal is stressful for the whole family. We all will all need help and support in every way. Help me alleviate the financial strain this disease has and will put on me.
Per my doctors' instructions I need to try to keep as active and busy as possible to keep as much strength as I could for my eventual transplant. Post transplant my goal is to be the person that I was for my wife, daughters and grandkids PRIOR to this diagnosis.
This is NOT an easy thing for me to ask for financial assistance as I have always been the one to be the giver, helper, doer and now, for the first time in my life I need to ask for help.
Please share my story, sign up to be an organ donor (you can save up to 8 lives and impact many more) and please donate to my campaign to help with all of the expenses that we are facing.
Thank you, thank you, thank you for any consideration on my behalf along with my family.
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