This is the top shelf of our second refrigerator in the garage. Next to the OJ is a weeks worth of Albumin or Protein that is infused with every dialysis treatment. Protein is needed for healing. Dialysis patients have a very difficult time keeping their protein numbers up because it dializes out, so you must have LOTS of protein in your diet. If you could eat a dozen eggs for breakfast every day and steak for lunch and dinner, it would probably still not be enough. He receives 63 grams of straight albumin every treatment but still needs to eat at least another 50 grams in his diet. John has lung, liver and pancreas disease due to his Alpha-1 deficiency. Every wound, bruise, infection and illness uses protein to heal faster than he can produce it. The infusions will be necessary forever to keep him well. The IV bags are delivered once a week on ice and are considered “food”. They have a short life even in the refrigerator. If they are left out, the life is shortened to 24 hrs. In front of the G2 is the Alpha-1 Proteinase Inhibitor. A home nurse comes once a week to administer the infusion. This medication will also be needed for the rest of his life. It is also FedEx’d to the house on ice and has a short life. In front of the Alpha-1 Proteinase Inhibitor is Epogen. I give this to John by injection 3 times a week. Due to kidney failure, he is not able to produce enough red blood cells. If his hemoglobin falls too low, he gets very tired (anemia), and worse case scenario he needs to receive a blood transfusion. This has occurred several times. Then the two boxes to the right of the Epogen are short acting insulin and long acting insulin. Both are taken by injection as needed. Close monitoring of blood sugar levels, at least 3 or 4 times a day, are necessary to keep his numbers from going to high or too low.
Then there are daily drugs. We won’t go into that in detail, but there are many. One of meds John takes to remove the phosphorous from his blood because the kidneys can’t, and it can’t be dialysize out is Renvella. He takes 4-6 with every meal. If you have high phosphorous, your bones will get thin and weak and ultimate break. If we were paying a full retail price for this drug, it would cost $9,600 for a 90 day supply. One other renal drug he takes cost $4,500 for 90 days. We are thankful for the financial aid we receive for these drugs because NOBODY can afford to pay these prices. Fortunately, all the drugs in the refrigerator are covered by Medicare except the insulin. We have no grievance with the medical system. It has taken care of us. However, we do not just sit back. We are constantly advocating, watching every action, discuss every diagnosis and treatment with doctors, nurses and each other. Getting old and serious illness is not for sissies!