Saturday, April 17, 2010


Clark was at a routine appointment at the Huntsman when one of the nurses came in and told Clark that Medicaid had denied the Bone Marrow Transplant. Both Clark and the doctor were surprised by this. The letter that came in the mail said that statistics show a 75% survival rate for the first year and a 55% survival rate for the first 3 years. I guess they didn't like those statistics. We don't either!

The question we have is who are they to judge the risk involved. They aren't doctors. And they certainly don't know Clark. Dr. Sussman said to Clark, "Do you know how I know that you're a survivor? . . . Because you survived the Acinetobacter virus." And he survived this at his lowest I might add. This same virus is going around among the troops in Afghanistan right now and there are many dieing from it.

If it's a matter of cost, it can't be much cheaper to pay for the $11,000 worth of infusions he receives weekly. Clark receives the most infusions of anyone at American Fork hospital. It's also not cheap to cover the cost of the expensive pills he has take now to eliminate the built up levels of iron in his system. When you receive blood, your body uses all it's components but the iron has no place to go. A normal healthy person uses their blood over 120 days. A normal infusion will last 60 days. And then there's Clark. He is going through blood within a week. Also not cheap to pay for the regular hospital stays, antibodies, and treatment he has each time he contracts a new virus or bacteria.

So what do we do now? Three of Clark's doctors plan to make an appeal and get them to accept the procedure. They have never had to do this before but are confident that Medicaid will change their minds. Clark told the Bishop about this, he talked to the Stake President, and if they have to they will take it all the way up to President Monson. There is a possibility that the church can negotiate with the Huntsman Center for a reduced price and then cover the cost. We have also talked about writing letters to congressmen, news stations, and even Oprah.

My mom, Wyatt, Loy, and Blake drove out to Utah in hopes of attending the hearing. Unfortunately it was postponed until next week but it was good to see them anyway. We had a fun and busy time with them and hope they will be making the trip again very soon for the BMT. My mom plans to bring Wyatt out, then stay during the few weeks he's needed out here in preparation for the transplant.

Receiving the BMT is Clark's only hope right now. Yes, it is risky but without it there is a 0% survival rate. The doctors have now said that he URGENTLY needs the BMT.

Mom's sister Loy and her husband own their own semi. Being the serving sister Loy is, she told mom she'd get them to Utah in their semi so mom would have no cost and they could make money in doing so. Loy was able to get freight to haul to Green River, Wyoming on their way out. Then Loy found freight to haul back to Minnesota which they picked that up right in Orem, Utah, just 15 miles from my home.

This is Blake, Loy's son. He was the main driver and the only one with a CDL but Loy took the while he slept. While Blake drove, Wyatt took shotgun, while Loy drove, mom took shotgun. Mom said it was one of the most wonderful and fun trips she has been on. It was comfortable and easy to get sleep in the nice rig they drive.

Mom and Wyatt on their trip to Utah in VanDyke's Semi. We hoped the Bone Marrow Transplant would be accpeted and that Wyatt would be admitted into the hopsital to begin the BMT. Instead they cut their trip short and headed back to South Dakota to work so they didn't use their "time off" up before its needed later.

1 comment:

Stephen said...

God bless you, Clark, for keepin' on keepin' on. And you, Kristin, for all that YOU do too.

What an inspiration.

Love yous.