Bubble Burst Update

I think quite a few people misunderstood when I stated how much we have to pay. The $250K for the transplant is with or without insurance. We are responsible for 20% of that ($50K). Because of the cost (and people want money) a transplant WILL NOT be considered until insurance is in place, if it wasn't already. We were also given wrong information and the $250K is a one time cost. The anti-rejection meds are not going to be cheap, nor are all of the follow-up appointments that will take place (not just for the doctor's visit, but hotel costs, gas, and food to Utah).

3 years post transplant, Medicare ends. After that, we are on our own to find insurance that will accept someone with with a very costly pre-existing condition. We are not the first ones to go through this situation, so there are programs out there that will help us pay for these costs as long as Lot is alive. Until we reach that point, we will not be given full information on those programs.

We are looking into all possibilities to help with the all of the very prohibitive costs, but have to wait for a few bills to arrive before that can be processed completely. Then we play another waiting game to see if we even qualify.

We have also had to go to the expense of getting our home ready for dialysis. We have to buy antibacterial soap (one is kept in the shower), hand sanitizer (and we can't refill the pumps as there is a contamination risk and if Lot were to get an infection, it would be VERY bad for him), a cart for all of the supplies to go on, baskets and bins for the supplies to be stored in (the boxes they come in would not stand up to repeated use, not to mention that some of the boxes are far to large to fit on the cart), a ton of paper towels (Lot can't use a bath towel to dry off his exit site because of the risk of infection, and he also uses a paper towel every time he has to hook and unhook from the machine), a 13 gallon garbage can to throw all of the uses supplies into, a gas can for the used dialysate to drain into, bleach to clean the gas can, and numerous over-the-counter medicines:

• Tums that are taken after every meal and larger snack (helps to bind the phosphorus)
• A protein powder (Lot needs 5-6 servings of protein a day)
• Vitamin D3 supplement
• Iron supplements (Can only be ferrous fumerate and is not sold around here, so we have to buy it online)
• Fish oil with 1000mg of omega 3's
• a stool softener because of extra iron and so that nothing pinches the catheter internally
• a renal vitamin that replaces the essential vitamins and minerals that are lost to dialysis (this can't be an over the counter multivitamin as those all have potassium and phosphorus in them)

We have also had to alter our diets to take out potassium and phosphorus rich foods: tomatoes, potatoes (including sweet potatoes), avocado's, nuts, bananas, cows milk, orange juice, tropical fruits, beans, mushrooms, and yogurt. Lot is also on a low sodium diet, so we leave the salt out of quite a few things or reduce the amount that is called for. We had to clean out our cupboards of the food that we bought a few months previous at a case lot sale and start fresh (Our ward was having a food drive at the time, so they got 9 bags of food from us which included a ton of beans and various types of canned tomatoes and higher salt gravies).

The only tomatoes Lot can have have to be the no-salt added, which I can only find at Broulims,which means we have to travel out of Idaho Falls to get them (I checked Winco, Wal-Mart, Smiths, and Albertson's and none carry no-salt added tomatoes). Fortunately for us, Broulims had another case lot sale a few weeks ago, unfortunately, they did not have the no-salt added tomatoes on the sale, but we bought 1/2 a case anyway. We have to buy the name brand of foods that are higher in salt as they have a lower sodium content that the store brands that I usually buy, like gravies and chicken broth.

We are a small family of 5, but we have monthly bills that need to be met and with no income, it is getting increasingly harder to pay those bills. We have and are receiving help to cover these basic needs, but are not sure how much longer that can take place. Our needs are still financial and will be for some time to come.