August was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in February of 2018, just 6 weeks following the birth of his son, Nathan. What started as a dual diagnosis of Influenza and Pneumonia, lead to further concern on X-rays, resulting in an urgent appointment to Pulmonology. Upon further testing, including scoping of the lungs, the pulmonologist determined August to have IPF, which is a terminal disease. There is no cure. Life expectancy once diagnosed is 3 to 5 years. The only chance August has of living beyond this is having a double lung transplant.
IPF is a disease that causes honeycombing and hardening of the lungs. The lungs fill with a raspy, sticky, glue-like fluid. It not only squeezes the oxygen from your lungs, but it takes away the oxygen going to the muscles, causing weakness and pain. It can cause your brain to slow down and lose your thoughts at times, leading to your speech becoming garbled and your thoughts slow to respond. Just walking a few steps can suck the air right out of your lungs. There are only 2 medications approved to be prescribed to IPF patients that are merely thought to slow the progression of this disease. August is prescribed one called, Esbriet. This medication alone has a monthly cost of $12,816.16 and so far August’s health insurance has helped in covering the cost. Unfortunately, Esbriet has some horrible side-effects that have taken a toll on August’s body. Within minutes of taking the medication, August has to lay down due to the dizziness, nausea, stomach pain, headache, fatigue, just to name a few of the side effects. He experiences vomiting and loss of appetite regularly.
As a family, we were told things to expect over time, what we weren’t expecting was just how rapidly this disease would progress for August. At his last appointment in December, August had again deteriorated a great deal from the previous appointment. It seems with each follow-up, his lung capacity has become less and less, with him only having a 49% lung capacity in December, and about 30% of that capacity is honeycombed, or severely damaged. This was concerning enough to warrant a referral to the University of Minnesota Lung Transplant Clinic. On February 11th, we met with Dr. Umesh Goswami, for an initial interview and evaluation for transplant. Dr. Goswami and the lung transplant coordinator that is working with August, both feel he is in need of this double lung transplant and are pushing to get him on the list. The likelihood that August will make it even a year from now without a transplant, is not promising. But to just add August to the transplant list is a process. The next step will be to return to the U of M for a week long visit including appointments and further testing for not just August, but for Jennifer, his fiance. As a family, we also must have a support team and a plan of care for post-transplant that the lung transplant team must approve of as August will need to stay within 50 miles of the transplant clinic for a minimum of 90 days following transplant. He will need around the clock care as he can not be left alone in case of possible rejection of the lungs. We have been told to start fundraising and setting aside money for August’s transplant fund. The coordinator has told us that the transplant team recommends about $10,000 to be put into a fund for this to cover the costs of housing, food, travel expenses for any of the caregivers and support team, amongst other daily living expenses required for the 3 month stay in the Cities. Once we have presented our plan of care for August following transplant, and the social worker, coordinator, and team agree to it, they will go on to determine if August meets candidacy for the
double lung transplant after including the other factors, such as the testing he will have undergone.
December 19th, 2018 was the last day that August was able to work. Up until this time, he had tried to work as much as his body would allow. His employer, Select Painting, had helped create a position for him following his diagnosis. Serving as Operations Manager allowed August to do what he loves the most, teaching and overseeing crews in the commercial painting world. It was a decision that came very hard for August, but he realized he physically needed to not overdo it or put his body at any further risk of damage in order to keep his chances for transplant possible.
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