Clinical Drug Trial Update

So many people have asked about my drug trial over the last few weeks. Since you are practically BEGGING me to share, I will.

There have been quite a few drugs trials for PSC over the years - none have showed any success. It seems like researchers have been scrambling to find ANYTHING that might help those of us who suffer from it. It is frustrating to have a disease that literally has NO cure, other than a transplant of a major organ. Even if the liver transplant is successful, there is a chance that PSC can return and ruin the new liver as well. In the meantime, the side effects can be so debilitating, and the risk for liver cancer and other problems are pretty high. 

I have struggled this year most of all. Once the craziness of my diagnosis came, the part where I had to accept it and LIVE with it hit me even harder. I have struggled with some pretty severe depression and anxiety this year. I remember so vividly a trip we took to Bear Lake last year. I was struggling more than usual, feeling like death was imminent. Erik and I were walking along the shore, and stopped and looked out over the beautiful lake and began to cry. I had an overwhelming feeling of despair wash over me. I told Erik this might be the last time I would see this place… one of my favorite places in the world. I worried that the time I had with my children would be short and that I had wasted so much time. So dramatic, I know. Erik held me, and said, "You're right. This might be the last time. You might not be able to beat this, and you ARE going to die." This is not what I expected, and it was hard to swallow. After more conversation, I understood.  He was not being harsh or negative, but giving me a reality check. My life was going to be different. When I think of this story, I laugh a little. Erik has never been one to sugar coat the truth - and when you are on the receiving end, it can be brutal. We went on to have a great conversation about eternal families and not wasting anymore time on unimportant things, so he redeemed himself.

Even though Depression and Anxiety did not leave me after that experience, we made the same trip to Bear Lake this year. I got to stand in the same spot, look out over the lake and feel hopeful. Yes, I was fatter from the 2 years I had layed in my bed feeling angry and frustrated, but I had  HOPE.

Getting on this drug trial was a total fluke. While I was at one of my regular appointments at the University of Utah, my doctor saw the trial coordinator in the hall when she stepped out. She came back in and said, "I just had an idea. I think you might qualify for a study that is enrolling right now." It was the final week of enrollment, and the criteria was pretty specific. They were having a little trouble finding people who met all the requirements since PSC effects so few people. The coordinator was skeptical that I would qualify, but we started the process anyway.

After 2 months of testing and being drained of what felt like most of my blood, I qualified and was able to start the drug last week. I went to my appointment alone, trying to be strong and independent. Yes, I constantly make terrible choices. I sat in the office and cried every time the coordinator left the room. As soon as I heard footsteps coming towards the door I would pull myself together and continue. I had to show them that I could give myself a shot in the stomach that would be required each week, so I tried to act cool. I almost passed out, but got through it. As soon as I got to my car I cried for an hour. 

I'm sure I have lost most of you by now… 

This study is double blind, so I am getting no hints from he doctors. I may be getting the full dose, a half dose, or a placebo. I will give my self a shot each week for the next 2 years, being tested and monitored along the way. The trial drug is not a cure for PSC, but has shown signs of slowing the disease and possibly reversing the scarring that occurs on the bile ducts, enabling the bile to flow freely. As of today, I have not had any side effects, which is common. My doctor called it "the most promising thing we have ever seen for PSC," and she has NEVER had a positive thing to say about any of the drugs I am currently taking. My liver tests have been stable for almost a year, and I have not had a hospital emergency visit since last Thanksgiving. I feel so blessed to have such a great medical facility close by. People with PSC are moving the the Intermountain West for great doctors and a better chance at a transplant. 

Trials are interesting things. I spent a long time being really angry and sad. I gained some serious weight, and my bed is permanently indented with my body in the fetal position, but I have gained empathy and gratefulness.

 I have watched a friend discover, and gracefully deal with her 10 year old daughters' diabetes. 

I have watched people in my life lose everything they own in a flood, and say, " I am so thankful for my community."

I have watched my husband is suffer too… He has kept the family going, knowing that his life won't be fair either.

I can honestly say I finally get this quote from President Eyring:  The test a loving God has set before us is not to see if we can endure difficulty. It is to see if we can endure it well. 

I want to endure it well.