Royce has blood work drawn every month and last Thursday was the day. I am super excited to say that he had some of the best blood work results to date!!!! We struggle to control his potassium and phosphorus levels but this month those numbers were amazing! Royce’s phosphorus level is usually high (above the 3.7-5.4 range) but this month he was 5.1! We did start him on a new phosphorus binding medication so that seems to be doing the trick!! The biggest surprise was his potassium level. Royce’s potassium was low at 3.4, which is crazy because he usually isn’t even in the normal range (3.6-5.2). We will continue with his low sodium, low phosphorus, and low potassium diet but this shows that having dialysis four days a week is really making a difference.
As I mentioned Royce was started on a new phosphorus binding medication. Previously he was taking over the counter Tums but this also contains calcium. We don’t need to strictly monitor Royce’s calcium intake but his calcium level was getting elevated enough that switching off of the Tums was required. The medication Royce was started on is called Sevelamer and it is very expensive! Very expensive as in my co-pay WITH my Mayo insurance was $650 for a month supply!!!! Instead of using my Mayo insurance I show the Costco pharmacy the WellRx app on my phone and only paid $40 for a month supply. I do not understand the prescription drug world because NONE of this makes any sense to me! I am thankful for the reasonable price and will use my FSA funds to pay for the medication.
Some of you may remember me venting about the price of the special kidney formula Royce was started on a month or two ago. Cow’s milk is high in phosphorus so Royce drank almond milk as an alternative. Since we have been having issues with his phosphorus being high and as an effort to increase his calorie intake Royce is drinking Rena Start formula. It is a powder formula that I mix with water just like baby formula. The company that makes the formula was nice enough to send me 8 cans/one month’s supply for free. When I inquired the cost of a can to purchase more, they told me it would cost $64 per can. Thankfully I qualify for the company’s financial assistance program and now only have to pay $16 per can! I think that the switch to this formula has also helped Royce’s phosphorus level drop. And the very best of this story is that Royce actually likes to drink the formula!!! I have yet to taste it but Royce likes it enough that he specifically asks to drink it. In fact, Royce was mad last night because he wanted a drink at 9pm and I handed him some almond milk because I didn’t want to mix up any formula right then.
One more piece of good news…because Royce’s labs were so awesome, Dr. Tran gave the ok to drop his dialysis runs times from 3 ½ hours down to just 3 hours!!! Going to dialysis four days a week sucks but to see these amazing lab values confirms that this is what Royce’s body needs to be healthy!!