My dad’s disease

My dad, the loving, patient father of three children, has always been a source of strength in my family. About a year ago, my dad began to have strange health problems that baffled even the doctors. Although he had always been very healthy for a man in his fifties, he suddenly began to have severe fatigue. Sometimes it was so severe that he would be unable to even help my mom unload groceries from the car.
In the middle of last semester, he was finally diagnosed with cardiac amyloidosis, a rare blood disorder where abnormal protein deposits occur. These abnormally folded proteins deposit in various organs, causing organ shutdown. In my dad’s case, they are depositing in his heart. This disease is so rare that very little is known about it, and it does not have a cure as of yet. Chemotherapy is used to ease it, but it is not powerful enough to fix the underlying issue.
The disease is brutal. My dad is deficient in roughly 20 vitamins and minerals, and his blood is as thin as an old man’s blood on Coumadin. His heart is so clogged with malformed proteins that it cannot expand and contract easily, causing his blood pressure to be so low that he feels like he will pass out whenever he stands.
A week before my wedding, I went to my parent’s house to stay with them. During the day, I would watch my dad drag himself around the house, moving slowly because of his difficulty with breathing. On bad days, he had to pause after every few sentences because he would become so out of breath. During the nights, I lay on the couch in my room upstairs, listening to him breathing loudly in his bedroom. When I couldn’t hear him, I would check on him to make sure he was still breathing.
Although this disease is rare, fatal and incurable, I have faith that a miracle cure will heal my dad. I never worry about his dying, but I do worry about his quality of life. I hate to hear him breathe so loudly at night. It hurts me to watch him take time to breathe just so he can speak a few more sentences. I hate the fact that he has to eat protein every few hours just to function at this substandard level. I hate watching the combined effects of the disease and treatment form the perfect recipe for misery and torture for my dad. It’s worse knowing that I cannot do anything.
Chemotherapy results in heart stress, fatigue, mild hallucinations, difficulty breathing, stabbing pains in the back and lightheadedness in my dad. The steroids he takes as part of his treatment cause him to have difficulty breathing, make him struggle in sleeping, and make him feel dizzy, irritable and nauseous.
As rigorous as his chemo is, it is not giving the results the doctors expected it to help him. His heart is showing greater signs of stress, than it did before, because of the chemo. My dad is now in stage three of heart failure. Stage four is a heart attack.
The stress in his life is compounded by the fact that the chemotherapy costs are $2,000 per week. As of January 22nd, my dad has had 10 chemo treatments, which brings the chemo bill to $20,000. The bill will probably be larger by the time you read this. This figure does not even include the cost of doctor’s visits, stays at the Mayo clinic and the medical tests.
Sometimes, life throws us curves without giving us many ways to fight back. Disease is one of those curves. There’s no way for me to reason or argue with it. The only way I have left to cope with this is by supporting my dad and asking others to help support. Things like this are impossible to soldier through alone, and we both need support to help carry us through this. If there is any way you can offer help, please go to https://www.gofundme.com/6njw7fws.