Imagine your life it is starting to look like everything’s falling into place. You plan a trip for your husband to go see Colorado and Stanly hotel for his birthday. The weekend before we leave my husband informed me that he’s coughing up blood. This is not a normal thing. I schedule an appointment for him and the doctor does some blood work. I say we’re not going on our trip and my husband says no we’ve not gone on a trip our entire marriage. I’m not going to destroy this time. So we go to Colorado and while we’re there, we get a phone call from the doctors office. The doctor tells us that they have scheduled an appointment for us at the Cancer center. This starts us thinking about all the possibilities. One month after we get back from Colorado we have our appointment. They do a bunch of test, but they don’t believe that it’s cancer, they’re not sure what it is. They set us up with the G.I. doctors and the next week. We are at the G.I. doctors. By this time we’ve noticed that my husband has dropped almost 70 pounds and all of his muscle that he had built over the last couple of years bodybuilding. His appetite is poor, his sleep is erratic, and he’s having trouble concentrating and breathing at times. G.I. doctors take a look at him and want him to also see the pulmonary doctor. They’re sure but they’re not sure that he has alpha one antitrysin deficiency,. His dad died of this in 1977 and all of his dad‘s side has passed away except for one uncle and his side of the family. Scared to death that this could be a death sentence for him we started preparing for the worst. Alpha one antitrysin deficiency is a very rare genetic disease. At this time they scheduled us to go see Nebraska Medicine multi-organ transplant team. We started our journey with learning about a transplant with them. we had gone through a year of ups and downs, Eric attempting to work. He brought in 70% of our income. As the weeks and months went by Eric spent multiple visits to the emergency room and staying in the hospital with pneumonia, ascites where he had to have a paracentesis, fluid buildup in his lungs, blood building up in his lungs, varices, and encephalopathy. Eventually, the beginning of January we realize that it was time to start working towards Social Security disability and set an Eric up to stop working. January 1 we did the disability paperwork, it is almost November 1 and they are still working on his disability OK. we have applied for state assistance and had been denied once we are trying again, but at this point it’s looking like I make too much money even though I have been spending more time taking care of him and our 13-year-old autistic son. I have tried to stay optimistic. in April. We decided that it was time to set up an appointment with Mayo Clinic. I had done some research on alpha one research and treatments. Cleveland clinic and Mayo Clinic are known for treating Alpha one patients. we set up our interview and they said it would be approximately six weeks to two months before we had an appointment. Eric stopped working in February because of the encephalopathy and his erratic sleeping. In July, right before his birthday, the Mayo Clinic called and said that we were approved for them to see him and that they would let us know when they set everything. I took Eric up to the Mayo Clinic right after that, and I checked him into the emergency room. Again he had pneumonia and his encephalopathy was really bad. They admitted him to the liver transplant unit. This is where he got to meet the head of the department and we got signed up for a couple of research projects that we’re going on with encephalopathy and alpha one. I feel as if we are on the right track at this point. He was in the hospital for almost a week and we went home knowing that we would be coming up shortly again for another week of doctors appointments and getting to know the transplant team. in September. We went back up to the Mayo Clinic at Rochester Minnesota. This time we went from appointment to appointment and talked from Dr to Dr. We learned a lot and found out that Eric is not going to need a lung transplant just a liver transplant. We learned a lot about the MELD scoring on placement for transplants. Eric’s right there at the cusp, but his other comorbidities place him in need. The doctors changed some of his meds and said that they wanted him to be on those meds for a couple of months so that when the transplant would happen, he would be stable on those medication’s. we’ve seen a few doctors here and Lincoln, Nebraska again that are helping the Mayo Clinic track his progress. We have an appointment with the Mayo Clinic doctors in December.
As all this is going on the Dr’s bills are piling up, the groceries keep needing to be bought, doctors appointments, and school for Robert. The finances are going downhill while we’re waiting for Social Security disability, and the state to make their decision. I’m looking to keep my family afloat. I’m looking to keep her home. Please send prayers to our family.
