Archive | August, 2013

Kim’s breathing test

22 Aug

Kim asked me to write this post. My first response was, “Do you want this to be a dry statement of the facts we learned this week, an overly positive take on our bad news or something authentic?” and when she said authentic I held her gaze for a moment and said, “really, are you sure?” so here it is.

On November 1st, 2011 we published our first blog post called A Letter to Friends where we broke the news from the worst day in the life of our family. After a year of searching for answers to explain why the healthiest person I have ever known could barely walk anymore I felt like anything the doctors said was going to be a relief, as long as they did not utter those three letters: ALS. It seemed too horrible to be real and nothing could have prepared me for that moment. As we came to grips with the diagnosis, as it became more real to us we began the process of fighting this battle. We have thrown pills, new diets, exercise, doctors, technology, prayer, laughter, love, and more than a few curse words at this disease. We have done all the things you are supposed to do, including make the regular trek to our ALS clinic in Little Rock to measure the progress of Kim’s ALS, learn how to adapt to the changes in what Kim can do, and continue the fight. We knew it was time to talk about a feeding tube because Kim would get tired from trying to eat her meals before she would be full. It was just too hard and a feeding tube could be just another piece of adaptive equipment that would give her the energy and time to do the things she really cared about. ¬†Granted, coming to peace with that was a more arduous process then the last sentence might lead you to believe, but we arrived in Little Rock at peace with that next step.

Each time we visit the doctor the news is a little worse. ALS is relentless. However, there is always hope because even as the ability to walk, hold things, and easily talk and eat disappear – as long as her breathing was good we felt like Kim was ok. This was the litmus test, the breaking point between living with ALS and dying from ALS because in the end, it is all about whether you can keep breathing. When the breathing test equipment would roll into Kim’s patient room she would always immediately become very serious and if the technician made even the slightest mistake in administering the test she would make them do it again. Over the last year her breathing numbers (the Forced Vital Capacity Test) ranged from 89% to 94%. And while Kim was always annoyed at the B+ on her record she saw that as an overall A average and could feel good about it. She made them do the test 7 times on Monday and the best score we could get was a 56%. That is a dramatic decline, a devastating number, and there is no way to be prepared for that news. We were both shocked. In addition to the surgery next week where Kim will get a feeding tube we will also be getting what is called a non-invasive ventilator that Kim will use to help her breathe. How could something that was so real before seem so much more real now?

Kim asked the doctor for a prognosis at the end of the visit and we were told that Kim has more than 6 months, that the Dr. has been doing this for a long time and if she thought we were less than 6 months out we would be having a different conversation, and that Kim is healthy and strong, and young and all of those things work in her favor, but that with ALS – “the disease always wins in the end.”

Strikingly Kim has been in a good mood the last few days. Tired and anxious about next week, but generally happy. Today many people asked me how Kim was doing and at one point I responded, “Physically, not well. The ALS is progressing quickly and it was a hard week, but she was smiling the last time I saw her today. So if the last thing ALS takes from you is your smile that has to count as a win, right?”