The Good News – It’s been several weeks since Kim started on the Humira and we are happy to report that all is going well on the RAD front for her. It seems like the Humira is starting to work. Kim’s energy level is up a little bit, and her swelling and pain levels are both down slightly. Any little relief is a good thing though it definitely it hurts a bit when she gets injected. She described it as, “a bad wasp sting that has fire in it’s stinger.” Yet the discomfort of those moments is worth it for her to feel better.
Her first shot went very well, but her second dose was a different story. Call it arrogant operator error. The Humira comes in this cool little injectable pen/needle device. The needle is hidden and remains hidden the entire time. You take the pen and remove the two caps, hold it against the thigh, and press the little button on the top. It makes a loud click and the needle and the medication goes into her leg . . . . . at least that is what should happen. Her second shot didn’t work out that way. I accidentally hit the button on the top before it was near her thigh, and we watched hundreds of dollars of Humira shoot across the dining room floor. Oh. And we didn’t have another pen on hand. Lovely.
Fortunately, Humira has excellent customer service and replaced her dosage with not one pen, but two. Both free of charge. One to replace the dose she missed and the other to keep on hand in case we have another issue. We were very impressed with their response to my mistake.
The Bad News – For those who have been following us on our journey, you will remember that Kim was diagnosed with a lung disease back in February. The lung disease is an extra articular manifestation of her RAD. She has been on Advair, an inhaled steroid, since her diagnosis to help her with her breathing issues. She has been doing very well and her shortness of breath and wheezing has improved quite a bit. She doesn’t have as much of a struggle breathing when she climbs stairs or when she exerts herself slightly. It appeared to us that she was responding well to the Advair and that it was controlling the disease that is attacking her lungs.
Yesterday she had another pulmonary function test (PFT) and a visit with the pulmonologist immediately after her PFT. This was a planned follow up visit to see how she was doing on the Advair. We both felt that the test would go fairly well and didn’t expect anything except good news after the appointment with the pulmonologist. Kim felt the PFT went very well, but when she met with the doctor his news wasn’t very good. Her lungs are only functioning at 63% capacity. That is a significant decrease since her last PFT and her lung disease is getting worse. To say that we were stunned would be an understatement. Kim asked the doctor how it is that she is doing worse when she feels so much better and his response was that the steroids are masking what is actually happening, though they are also helping a little bit as well. The doctor provided us with some options to consider as we move forward and he gently told Kim how sorry he was in light of the bad news.
So now what? We need to know for sure what exactly we are dealing with and that means we have some decisions to make. So far the diagnosis we have received has not been confirmed one hundred percent. In order to receive a confirmation of the pulmonologist’s diagnosis they need to do a biopsy of Kim’s lungs. There are two ways to get a biopsy. One is to do a bronchoscopy — running a scope down Kim’s throat and into her lungs — while under local sedation and try to get a large enough sample of her lung that way. It would be a relatively easy procedure that they could do at the local hospital. Minimally invasive and low risk to Kim, it wouldn’t require her to take any time off of work and there is no real recovery time needed. The downside is that the majority of the time they are not able to get a large enough sample of the lung to conclusively diagnose the disease. That brings us to the second option which is an open lung biopsy. This procedure would involve multiple incisions being made into Kim’s side so that they could remove a large enough wedge of the lung to confirm the diagnosis. This procedure would be very invasive and would require hospitalization and weeks of recovery.
For now we are opting for the bronchoscopy and are hoping that God will answer our prayers by providing the doctor with a large enough sample to reach a conclusive diagnosis. Obviously, we hope to avoid the trauma that the open lung biopsy would inflict on Kim’s body. Especially since her medications already have her living in a body with a compromised immune system.
The Best News – Have you ever been punched right in the stomach so hard that all of the wind was knocked out of you? Or maybe tripped and fell hard enough to do the same? That was how we both felt initially when the doctor gave Kim the news. A little time of letting the news soak in, a few calls to family and some dear friends, and of course time spent in prayer helped put both our hearts and minds back into the right perspective. While we may have felt like we were socked in the gut and were completely taken by surprise, God wasn’t. He wasn’t watching Kim’s appointment from Heaven saying, “Wow! I didn’t see that one coming. I thought she was getting better.” No, God is as utterly in control of the days and minutia of our individual lives yesterday and today as He has always been and will continue to be. There is significant comfort in that truth. That He has our days and hours numbered and that He cares for us as the Good Shepherd who watches His sheep. His call to us in this time of need is the same call since the day that He redeemed both of us, “Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” (emphasis mine)
Whether we receive good news or bad news we still hold onto the very best news and that is our standing in Jesus Christ given to us through His death on the cross. Because of His completed work that removed our sin and the penalty that we so justly deserved, our lives are now hidden in Christ. No matter what our yesterdays or tomorrows hold, whether Kim’s health improves or worsens, nothing can change our standing with Christ. We fall again and again on this truth regardless of any news, diagnosis, or prognosis. We are His and He is ours. John Calvin said, “The stability of those who rely upon Christ is immovable, and their course is not at all wavering, or liable to error.”
Now to him who is able to keep you from stumbling and to present you blameless before the presence of his glory with great joy, to the only God, our Savior, through Jesus Christ our Lord, be glory, majesty, dominion, and authority, before all time and now and forever. Amen. (Jude 1:24-25 ESV)
Update: Kim’s bronchoscopy is scheduled for next Wednesday. One week from today.