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?”

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14 Responses to “Kim’s breathing test”

  1. Linda Mullane August 22, 2013 at 10:45 pm #

    we don’t know each other but I saw this and just felt the need to say God bless you and Kim. By you writing this I read it to my husband who was finally diagnosed with ALS just this past year. We have been trying to find out what was going on with him. We went through so many test and Doctors. He has gone down hill really fast he just got a feeding tube on Tues. He is getting a bypap next week to help him with his breathing at night and one to use in the day to strengthen his lungs. He also goes to the clinic in LR. I just wanted to say thank you for sharing your story with us. My husband it having a very hard time with this accepting it. I thank God everyday that he is still with me but it is hard to see him the way he is.

  2. Dana August 22, 2013 at 11:14 pm #

  3. Barbara B. Shadden August 23, 2013 at 9:20 am #

    I think of you both often – as you know, I am way too familiar with this rotten disease and have been amazed by your strength and determination in challenging the ALS. I’m sorry to hear about the drop in respiratory capacity but heartened by the fact the feeding tube and respiratory device can be done together next week.

    Thank you for the blog that helps others and lets people like me…who are on the periphery…know how things are going.

  4. Janet Bachmann August 23, 2013 at 4:03 pm #

    John, Kim, and Jack, I also think of you often and am so glad you share on this blog. I have been glad to see Kim at the farmers’ market so many Saturdays this summer. Love you!

  5. Nancy Johnson August 23, 2013 at 7:15 pm #

    We continue to pray and support you and your family. Lots of love.

  6. Mona Gracen August 25, 2013 at 9:13 pm #

    Love you, Kim! You are in my heart always. And though I have never met John or Jack, they are now as well.

  7. Aubrey Pate August 26, 2013 at 8:08 am #

    I continue to pray for you, Kim, and for your family. Love, Aubrey

  8. Tiffany Heath August 28, 2013 at 11:02 am #

    Kim, keep up your great strength and never lose heart! 🙂 Jack, Ms. Kathan, John, and Family, you are also always in prayer and remember that God is with you every step.

  9. Dana Felice-Podwol September 12, 2013 at 10:23 pm #

    Kim, John and Jack, You are so strong and brave!! Thank you for sharing this. You’re in my prayers daily for health, strength, joy. Kim, this post makes me think back to our days in Ithaca, where every single time I saw you, you were smiling a huge beautiful contageous smile, just having fun where ever we were. I’ll never forget that New Year’s Eve party where you so proudly showed me your wedding pictures, your beautiful wedding on the beach. You were just glowing and I’m so happy you two have found so much love and happiness together. xo

  10. Janet Clark September 24, 2013 at 9:25 am #

    Many, many blessings; all the love, all the hopes and prayers of all beings, be with Kim, John, and Jack.

  11. Laura October 5, 2013 at 9:58 pm #

    Kim,
    Always and forever you are the girl who sat outside Leather Express with me on a lawn chair when we were supposed to be working; you are the one who taught me how to open my mind and heart and become part of something so much bigger than myself; and you continue to teach and to show and to love with every day that you live with ALS. I love you so very much and think of you often.

  12. Linda January 14, 2014 at 2:21 pm #

    Kim and John, This is Linda, I was your wedding officiant at your wedding a few years back. I always get your Christmas cards and although I get many cards from past couples, your’s always stands out because I remember what a joyous spirit you Kim had on your wedding day. You were both so kind and easy going, I knew you were going to have a strong marriage. When I received your card this year I did notice that Kim was in a wheelchair and wondered what had happened, so I googled your name and this blog showed up. I’ve read through much of the postings and was so sad, but one post said to not be sad and to pray for the sadness to leave, so that’s what I did. I’m sure you never thought that something like this would affect your lives and sometimes life throws these curve balls at us out of no where, but like the quote in your Christmas card said “we can’t forget to live”. It looks like you’ve both done just that , continued to live your lives with the same enthusiasm you had on your wedding day. May God continue to give you both the courage and strength to get through this no matter what the outcome. I also pray for your son, he’s so handsome! May God give him strength as well.

  13. Sheri Rogers May 15, 2014 at 10:46 am #

    John, I wanted you to know that you and Kim and Jack are in my thoughts. I think of you often and hope that the grace and love that you have shown throughout this journey continues to sustain you.

  14. Rhonda Thompson July 4, 2014 at 5:03 pm #

    John and Kim,
    I just wanted to say I am thinking of you and your family. Sending prayers for you daily.

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