Monday, April 06, 2009

My Miracle

In 10th grade I was diagnosed with a non-life-threatening gastrointestinal condition called Crohn's Disease. For me, the symptoms included intense cramping after meals (anytime one of my female friends complains about cramps, believe me, I actually do know how you feel), low-energy, decreased appetite, and very frequent (and very loose) stools. As a first step toward treatment, my doctor prescribed Prednisone, a steroid that almost immediately put my symptoms under control, and allowed us time to pursue long term treatment options. Also, being on a steroid, I was unusually energized, and my room was never cleaner.

Sometime during 11th grade, I was placed on Remicade, a "miracle" drug if ever there was one. Originally used to treat arthritis patients, the FDA has also approved it as an alternative treatment for Crohn's when conventional medications don't work (as was the case for me). Since then, I've gone in to a clinic every 6-8 weeks for a 2-hour infusion, and this kept me leading a normal life. Aside from the few days leading up to each infusion (when I'd feel the symptoms start to return), I never needed to worry about my diet or health more than anyone without the disease.

Remicade is an incredibly expensive drug - administered at a clinic, the price is $6,000 per infusion. At a hospital (my most convenient option while in school in Northfield), because everything is more expensive, it doubles to over $12,000. Fortunately, under my parent's insurance coverage our out-of-pocket co-pay was only $150, that's it. However, this past summer, when I started working at Minnehaha, my coverage transferred into my own name, and as part of that changeover, the cost of an infusion dramatically increased: my first infusion would be a $2700 out-of-pocket expense, and, while every medical expense I incur after that would be covered by insurance at 100%, I didn't really have that much money lying around asking to be spent.

Mid-way through summer, I heard a sermon about healing. During the sermon, we also heard an audio clip of Duane Miller, an author and speaker who had lost his voice from a flu infection. The doctors were unable to help him and gave him no hope of recovery. Duane's voice had been reduced to a painful whisper at best, yet he still insisted on teaching Sunday school lessons when he was physically able. We listened to the recording of his lesson one day, as he taught from Psalm 103, barely able to rasp out the words, when his voice spontaneously came back. Miracles still happen.

As I drove home that day, I prayed to God for healing in my own life, as well. 'God, I would like to ask for healing. I don't need it, Crohn's isn't life-threatening, and I have a treatment option that is working for me, and there are a lot of other people in this world who deserve miracles much more than I do. But still, it'd be pretty cool if you healed me. My faith won't be shaken if your answer is "no", but Psalm 103 tells us we can ask, and so, I'm asking.'

I neared the 8 week mark since my last Remicade with anticipation, and perhaps trepidation. 8 weeks came, then 9, then 10, and so on. Wow. Around 16 weeks I was past the point of no return - there was no denying the miracle that had happened in my life, and I felt confident I would never again need another infusion of Remicade. As the weeks went on, I kept a counter in my calendar, all the way up until this last Thursday: 43 weeks.

On Friday afternoon, I started feeling some symptoms coming back. I prayed, I ignored it: I'd been semi-sick this past week, that might have explained the symptoms. By Saturday, though, there was no denying it: my symptoms had returned. In between trips to the bathroom I'd feel mostly fine, but always with that fear of when the next urgent trip would be needed (and they were all urgent: rarely did my body bother to give me more than 60 seconds of warning to find a porcelain throne). This was especially inconvenient because this past weekend I was in Iowa for Awaken, and my physical not-well-being was affecting my ability to do my job.

I prayed a lot. Emotionally, I was very sad - the physical aspect aside, I had believed I'd never need treatment again, I had believed my healing was permanent, and now, I found out, it wasn't. "God, please don't let this end after 43 weeks. And yet, not my will, but Yours be done. My faith in You remains." As I came to terms with what was happening, another verse came to mind: "The Lord has given, and the Lord has taken away. Blessed be the name of the Lord" (Job 1:21).

God gave me the miracle of 43 weeks, and nothing that happens now can ever take that away from me. God gave me a real-life miracle. Wow. Despite my disappointment that the healing had ended, I strove for gratefulness and trust - I knew, and know, no matter what happens, it's in God's hands, and I can think of no one I would trust more.

This morning, I called my Mom and told her what was happening. Then I called my doctor's office in the hopes of scheduling something today. Trying to get in to see my specialist is ridiculously difficult - normally they're scheduling out at least two months, so I knew the odds of getting something today, or even this week, were low at best. However, one of the doctors at the clinic had had a cancellation, and I was able to book an appointment with him early this afternoon. Because I'd been off Remicade for so long, I wasn't sure I could just start back up again; I also didn't even know if my prescription was current, so even if I was able to schedule an appointment for an infusion, they may not have had the orders they needed to actually give it to me. Lastly, I also wanted to find out more about a do-it-yourself-at-home alternative I'd heard about.

I was in such a bad mood this morning, but my doctor visit was nothing short of amazing. He was so friendly and compassionate, and he patiently answered all my questions about our options. I learned that going back on Remicade is probably not a good option for me - patients who have been off the medicine for longer than 6 months often develop an immunity to it, and worse, may also have a severe allergic reaction, perhaps similar to someone who is allergic to bees (throat swelling, etc). Why? Apparently one of the ingredients in Remicade is a mouse molecule that the human immune system (correctly) identifies as foreign, and can, if you stop taking the drug, develop antibodies to fight it.

Humira remains an option, though. It is commonly used with Crohn's patients who have stopped Remicade, and is administered by the patient at home, similar to an epi-pen, you just jab yourself in the thigh, wait 5 seconds, and you're done. Once every two weeks - no more taking half-days off work for 2-hour infusion appointments at a every couple months clinic. I have an appointment scheduled with my primary doctor in a month (his earliest available slot) to make the final decision on treatment, but Humira is the likely option.

Here's what's really cool about my doctor visit, though, and the part that has lifted my spirits so much: I asked at one point if he was a man of faith; he replied he was, and in fact his father was a minister. So I told him my story from summer, and he did something no doctor has ever done for me before: he shared a similar story of healing from his own family: his brother had been diagnosed with Crohn's around the same age I was, and then, after going to a youth conference and being prayed for, received healing for 7 years (with no medications) before the symptoms returned. In the end, my doctor not only gave me the medical guidance I needed, but also helped offer spiritual guidance from his own personal experiences. I could not have asked for anyone better to see me today.

So what happens for the next month? Today's doctor prescribed me a healthy dosing of Prednisone, which has already made a dramatic difference in the few hours since I took it. This will control the symptoms until the long term solution is determined.

I can see how some may be tempted to ask, "Where was God in all this? Why heal you just to take it away again?"

To answer the first question, God was pretty much in everything that happened: this flare-up waited until after I'd given my chapel speech at Minnehaha on Thursday; somehow there was a last-minute cancellation that I was able to schedule into, and somehow that just happened to be with this amazing doctor, himself a Believer, and who was able to understand and appreciate my story about my miracle. God was in my friends who called today to see how I was doing, in my parents who have always pledged their absolute support, both emotionally and fiscally (so that I wouldn't be left unable to afford medication), and God was in the community of believers who have been praying for me all weekend and all day today. I suspect God was also involved in the fundraiser signs at the high school Awaken performed at on Sunday: "Coins for Crohn's". Of all the random fundraisers, that they would have one this week for my particular disease... cannot be coincidence.

I also anticipate that God will use this experience in my life to give me opportunity to witness to others. It's one thing to say "God is good" when everything is fine and dandy, it's another to be in the midst of some form of suffering and yet still able to praise God. I love the book of Job, and while my situation is no where near as awful as his was (my family is still alive, my cattle haven't been burned by fires from the sky, my servants, or vacuuming robots, if you will, were not slaughtered by neighboring countries, etc), still in the midst of my brokenness I have found peace, and perhaps my story can be an inspiration to someone else along the way.


Mom and Dad said...

We, too, feel that miracles still happen.
You are one of them.

EXIT TO HOPE said...

that's amazing Jeremy to hear what God has been doing in your life despite it all. Thank you for being willing to open up and being used by God. Will Definitely be praying for you.