Home » The Magnificent Journey » Auto-immune » New Path: T-Tube

New Path: T-Tube


I am listening to Matthew West’s CD “Into the Light: Life Stories and Live Songs and CD “The Story of Your Life”. My sister went to Matthew West’s concert and picked these up and she kindly let me borrow them. Each and every single song on these two CDs speaks to my soul, heart, mind, and I hope that you all will get the opportunity to take the time and listen carefully to the lyrics and the songs. So while I am writing this post this is the soundtrack I am listening to.



I’m tearing up as I type this. After a stressful two weeks I am finally able to decompressed and process all the events that have led me to this moment. I am asking that you my dear reader stop here, go make a hot beverage of your choice and let’s connect. It is going to be a long read.

How do I begin this story? How do I begin to explain the suffocation? How do I even begin to explain the wobbly, emotional roller coaster I have been on? Last week, I woke up, choking, unable to catch my breath. I was petrified. I couldn’t find my cell phone so that I could call 911 for help. I had to force myself into my wheel chair and wheel myself down the hallway to knock on my neighbor’s door and this was all done at 3 in the morning. Talk about being a rude neighbor, my neighbor was kind and was not upset. I still felt bad about the whole production. I ended up at Peacehealth here in Vancouver. Since oxygen was too thick for me to breath in. Did you know that oxygen can be too thick for someone to breathe in? I didn’t. I was on a helium/oxygen mix in order for it to be thin enough to go through the thick scar tissue in my throat. Yes, my voice did end up getting squeaky and for a brief moment I had a chance to laugh. While waiting for the different medical professionals in my life to figure out what my next steps should be I had to wait in ICU. Waiting was excruciating. All my options seem bleak to me. The pain of not being able to have my impossible healing that Jesus speaks about hurt me deeply. I had no hope. My best option at that moment seemed to be just letting my trachea close off and die right there in the hospital. Everything accumulated into this big gutter of muck that couldn’t be released. Waiting. Waiting is the hardest part. Believe me, it is. The first decision was deciding which hospital to take me to, South West Washington in Vancouver Washington where I live doesn’t have the right medical equipment that I needed. In a matter of hours, it was decided that I would go to OHSU which is only across the river instead of across the state. At 2 in the morning I was transported by ambulance to OHSU ICU unit. After being checked in that is when the different medical units started flooding into my room trying to figure out the best way to help me. All the while, I had helium hooked up to me and a mind that needed to cry and vent to someone. I took to my Facebook and I left a post that would make a sailor blush. I apologize to my family and friends for my foul language. I couldn’t think of the words I wanted to say to express my pain.

To say I just had a break down is simple. It was more than just that. I vented, I got angry, I yelled, my version of yelling, and I felt like I was going backwards again. That all the progress that I had made just went out the window.  I wrote out my frustration on my Facebook page, and I shared my pain with family and friends. I especially lost my emotions when I started getting information about my choices. I couldn’t get a resectioning because the affected area is 5CM long and way too long to just simply cut out. A stent wouldn’t work long term, because it is too dangerous. There was an 80 to 90 percent chance of it slipping and going into my blood veins and killing me. My hopes, my goals, my dreams, everything seemed loss at that moment. I felt so defeated, I felt like God had basically told me no to healing. That I was made to only to be watch suffering. I hate feeling like that. I hate feeling like a victim. I reached out. I let it out. I knew Paul asked for healing and that God told him no. Being told no, hurts. From watching the 700 club and how ministers pray healing seemed like something God wanted for me. Is that the truth? Did God truly promise to heal us when we asked? Could he tell us no? Yes, Paul was told no when he asked to be healed. God wanted him to stay humble and to be reminded why he was fighting the good life. I didn’t want to hear that at that moment. I was angry about that answer.

The new plan, a T-Tube. Yes, another T-tube. The same one that did not work before. The short tube that just made mucus production a misery and worse, and all I seemed to be good at was hacking and spitting at people. Ugh! I hate feeling like a Llama. Believe me I let my doubts known to my medical team. I’m not a quiet patient. My surgery was scheduled for a Friday morning. I had two days to get used to the idea of living with a T-tube again. My mind couldn’t fathom the different way the doctor would be putting it in compared to how the doctor did it before.

Praise, moment here for me. I am extremely fortunate that I have a supportive and loving family and not just my family, but my friends. The next morning after my emotional break down where I just seemed to scream a bunch of swear words and cry a new direction began to emerge for me. First, my brother had his pastor come and talk to me. I needed that. Chad and I talked about identity. I shared my painful moments with the church. How cruel comments had made me feel abandoned by the people Jesus uses to make us feel value, and this pastor asked why didn’t you go to the leader and tell him about it instead of walking about. That is a good question. The simple answer for me, I didn’t think I would be heard. Unfortunately these last few years my identity has been wrapped up in how others saw me as a spitting machine and having a loud stridor than the average person.  I couldn’t fathom how God saw me. I realize at that moment that one of my focus words for 2017 will be identity. Then an hour later, the chaplain for OHSU came by. She and I talked about Joy. One of the fruits of the spirit. I had lost my joy. I haven’t felt joy in years. All I felt was suffocation. My second focus word for 2017 emerged. Joy. I am going to do the Bible study of Joy with the book Enjoy by Trillia J. Newbell. I am currently looking for people who would like to do this with me. I will write more about it at a later time. God sent two ministers to chat with me. Then an hour later, a student doctor came into my room to interview me about his profession. How interesting is that? I took the opportunity to share with him, to inspire him, to encourage him to keep his compassion for people. Then after the student doctor came in was an RN who has Wegener’s like I do. Her kidneys were affected and she had to go through the process of healing with her kidney’s and dialysis and the chemo drugs. I have never met someone face to face who has Wegener’s. It comforted me to see someone’s eyes who suffered the same disease that I have. Who is an RN, who is happily married for 30 years to her husband, who is happy, who loves people, who hasn’t let her illness stop her from living a joy filled life. I needed to see this illustrated. I needed to believe that this was possible. God knew it and he gave it to me.

I’m utterly amazed at how God took strangers that I didn’t know to bring me a message of restoration, joy, identity, and love to my heart. I felt heard. I felt valued. I’m stronger now. I’m still getting used to living with a T-tube and having to do maintenance things in order to keep me breathing.

Here are my conclusions from this experience:

1: I need to open up my heart to my community. That is why I have decided that in January after my wound is healed enough and I am better to time my T tube needs to have a bible study in my home. I want to find 4 or 5 women who would like to read through the book Enjoy by Trillia Newbell and do the Joy project with me. If this interests you, contact me. Let’s keep in touch.

2: That it is okay for me to break down and express my frustration. I don’t have to dwell in it, but to say I’m having a difficult time and allow others to comfort me is a gift. Thank you to all of you who send me music videos, scriptures, quotes, words of kindness. I love you and I am grateful for them all. They did help me.

3: As I walk this path, this new, curvy path, I am loved, valued, and supported. Jesus has me in his palm.

One Response so far.

  1. You are so brave. Thank you for not giving up. Thank you for being such an encouragement. I love you.

Leave a Reply

Your email address will not be published. Required fields are marked *

Thank you for leaving your comments. To avoid spam please complete the task below. Have a great day!WordPress CAPTCHA