Tuesday, November 26, 2013

The Beginning of Our Lung Transplant Journey

Kyle's Story

The first symptoms of Wegener's Granulomatosis began to surface in Kyle's life the summer before his freshman year of high school in 2000. Kyle was just finishing up the baseball season and began the treacherous “two- a-day" football practices in the August heat. While practicing, Kyle noticed he was becoming very winded in between drills, had severe headaches, and exhaustion so after practice was forced to ice his feet because of throbbing pain in this arches. However, this didn't seem too different from what his other teammates had been experiencing; they too felt exhausted from this grueling routine.
As the season progressed, the symptoms kept getting worst. Nothing seemed to help, not even the new arch supports that Kyle had started wearing. Kyle also started having ear infections that would never clear up. One such infection required Kyle to have surgery done on his left ear. The surgery was a mastoidectomy, which removed several parts of the middle ear. This resulted in cleaning up of all infection, but a major loss of hearing. After recovering from the surgery, Kyle was back to normal activities. Most included fall hunting and working construction with his Dad. Then came a trip to a haunted house with his family a few days before Halloween that fall. While walking through the haunted house, Kyle started to feel sharp pains in his chest each time he took a breath. Kyle mentioned the severe pains to his family, but everyone decided that they would wait until the morning to see if the pain subsided. The next morning, Kyle woke up and tried to walk around the house. The pains were even more intense. His Mom decided to take him to the ER.

After numerous tests, Kyle was admitted into the hospital. The doctors had found seven lesions or holes in Kyle's lungs. After being in the hospital for few weeks,  Kyle's health kept declining and the outlook was grim.  They insisted he be given his last rights, while his family stood by helpless.  In his family’s desperation for answers he was finally admitted to the University of Iowa Hospitals for further evaluations. After intense testing for five days, Kyle was diagnosed with Wegener's Granulomatosis.

Wegener's Granulomatosis is the inflammation of blood vessels that affect the nose, kidneys, lungs and other organs. Because of the damage it can cause in these organs, immunosuppression medication is required to keep him in remission. Once the proper amount of medication was found, Kyle's Wegner's went into remission by the end of his sophomore year of high school. Although the disease was in remission, he had permanent damage to his lungs and kidneys. Kyle would no longer have full capacity of these vital organs and they would have to be monitored closely. During college and the first 2 years of work, Kyle experienced a few flare-ups, but they found medications that quickly suppressed the progression of the disease. 

This past summer Kyle was busy as ever with outdoor activities, especially golf. On the golf course Kyle started to notice severe shortness of breath and exhaustion sooner with each round he played. It got to the point where Kyle and his wife decided he needed to see his pulmonary doctor. He then started riding in the cart while golfing because he could not walk the course. The shortness of breath and fatigue started to force Kyle to stop most activities after work each day. Kyle would come home and usually spend the rest of the night in bed or on the couch. After being referred to University of Iowa Pulmonary (lungs) and Nephrology (kidneys), and countless lung and kidney function test, it was determined Kyle had 20% capacity in his lungs and 22% in his kidneys. Due to the decline he has been forced to use oxygen 24/7.

Kyle is now in the process of becoming a candidate for a double lung transplant and a kidney transplant. It is a very lengthy process to be placed on the transplant list and the tests are extensive. He was currently told he is a good candidate for a kidney transplant but Kyle's case is very complex and as you can imagine will be very costly. The transplants themselves will be costly, and Kyle has been told the immunosuppression medication post transplant will be roughly $60,000 per year. Once he finalizes his candidacy for lungs he will have to continue to travel to University of Iowa to receive tests and post transplant he will have to live close to the hospital campus for a month for close testing and daily rehab.

An excerpt from: https://www.giveforward.com/fundraiser/25t1/caringforkyle

Fast forward to a few months later, and Kyle has been turned down by the University of Iowa Hospitals due to the complexity of his multi-organ surgery. We then were referred to other clinics by Iowa in hopes of being accepted at a larger program, meanwhile my family and I started working on our home in preparation for us to sell, as it was too hard for Kyle to get up and down the stairs. We then moved in with the Beert's and got settled. Eventually Kyle and I traveled to Duke University Hospitals, and Cleveland Clinic  in hopes of being accepted into their transplant program. After months of testing, travel, waiting and more waiting. In September, Duke told us they believed Kyle was ready to start working with their program in preparation for transplant. Once we heard the great news we prepared ourselves to move and found a place in Durham, North Carolina to call our home for awhile. 

From day one, Duke University was aggressive in preparing Kyle for transplant. We attended education classes everyday for a month to prepare. All the while Kyle was attending rehab classes for 4 hours a day to keep himself strong. On Oct. 11, 2013, Kyle received the good news, he had been listed! It was such a great early birthday present for him as this would be a chance at a new life. After another month of vigorous rehab and classes, Kyle went into Clinic to find his pulmonary function test scores had decreased by 13%. This qualified him to have his UNO's number increased by a few points. Then, a few hours later we got "the call". They had found a donor..

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