My Story With Vasculitis
I was asked my Jim Bornac and Chelsey Lawrence to participate in writing about patients living with Vasculitis. I did. Check out Chelsey’s blog Hope to read about her story. You can find Jim Bornac sharing articles and all types of information on his Face book.
Waking up early one morning, not being able to move my legs enough to walk to the bathroom and having to call an ambulance for help was not only embarrassing, but also humbling. I have always been independent. I prided myself on not needing help from anyone, but I was quick to lend a hand to someone else in need. Now it was my turn; I was the one who was in need.
I asked my sister Carri to attend a doctor’s appointment with me. Struggling, wheezing, and forcing my body to walk down the long hallway towards my turn at the pulmonary machine to test my breathing, I was not alone. I could not even do the test at all, when I was my lips were blue and purple from exerting enough energy to blow air into the machine. I knew I had a problem and I was correct.
As I was driving home to Vancouver from Longview that day, I kept praying and thinking to God, “What do I do next”? “What is the next step?” Then like a divine wisdom in my heart and head, I heard, “I am worth fighting for”. As I walked into the door of my apartment my phone was ringing. Dr. Collins was calling me, himself. I needed to return to Longview. There was an obstruction in my trachea and they need to do a CT scan. I had no energy left; my energy was spent just getting to the pulmonary lung exam that morning. I called my brother and sister in law and my sister Carri to see if they can arrange for them to get me and take me back to Longview. They did! This is where my adventures to Vasculitis began.
By March of 2009 I made a decision to find a new doctor. I felt that the one in Longview had no interest in helping me figure out what my body was doing. I called around Vancouver and made an appointment to see Dr. Jodi Houghton at Legacy Salmon Creek Medical Center. That Decision helped me to proceed to where I am now. Dr. Houghton did not realize she would become my doctor. As I was walking down the long glass bridge way to where the doctor’s office, she was walking behind me and heard my stridor breathing and thought to herself: “that lady has some constriction happening I hope she gets the help she needs”. That is why I feel in my heart that God lead me to this moment in time to aide me in my fight for my life. After the first 15 minutes of hearing my issues, Dr. Houghton called an amazing ENT Dr. Anderson and the next day I had my first appointment with an Ear, Nose, and Throat specialist. That is when my life started going towards hope. I had two amazing doctors who were willing to stand with me and fight alongside me and my family to figure out what my body was doing. In my heart, I know that God led me to this moment in time to carry me, in the fight for my life.
Dr. Anderson and I worked together and I truly began to trust him and realized how much he cared about me. On July 20, 2010 I went in for a simple dilation surgery that was supposed to be an in and out procedure but turned into a month long adventure in the hospital. When I was put under anesthesia I had a larynx spasm during surgery. A larynx spasm is when an uncontrollable or involuntary muscle contraction happens in the larynx cords. It usually lasts for 60 seconds, stopping air from going in or coming out. That simple spasm caused all my fluids in my body to rush up to try and break the blockage. That combined with the Dr.’s efforts trying to push air into my body caused a catastrophic event to happen. All my bodily fluids went into my lungs, which dropped my oxygen level to 38 percent, causing me to get pneumonia.
I was in ICU for two weeks; having the worse hallucinations. Here are some words of advice for anyone who will be going into surgery: Do not read, watch, listen to any horror, and negative things before going in. I made the mistake of reading a Frankenstein series the days leading up to my surgery. Can you guess what I hallucinated? If you guessed the new Frankenstein series, set in a hospital of quacks, then you got it. I was not a nice patient. I was tied to the bed, while I scared my family to death, with my visions. Thankfully it was not a permanent state, two weeks was long enough. All the larynx issues caused me to receive my first trach, and I hated it. I was so glad it was only for a month, and I am thankful that I had a small introduction to having one before the last surgery I had in December of 2011 when I ended up with a trach much longer. Dr. Anderson stood by me and my family and he continues to do so. I have been extremely lucky to have an amazing team of doctors.
The experience on July 20th, 2010 caused me to reevaluate my beliefs and foundations of my life. Anyone who has had a near death experience usually does this. For me, I realized the importance of relationship, communicating and working together as a team. I don’t mean communicating like we do on Face Book or text messaging, I mean where I am actually honest with those around me about my feelings and problems. I have also let those around me know how much they mean to me. I have also realized that I am not alone in this fight. In order to fight for myself, I have to not only be verbal, but I must know what it is I am feeling, what is going on with my body, and know that those who are not interested in me and what is going on in my life will not stick around. Instead of wasting my energy on those who can’t bear, I build relationships with people that are able to love, honor, and care for me, where I am at. Since July 2010, I have been on a quest of learning how to live and to be a person with a chronic illness. I have chosen to not let this incurable disease stop me from living a fulfilled life.
On December 7th, 2011, I went in for a dilation, similar to the one I had on that dreadful July day in 2010 and since that day in 2010. Since that day in 2010 I have had three more dilations that went amazingly well with no complications. This is where my positive record changed. The three hour trip to the University Of Washington went well with my awesome sister in law Kris. My sister Carri was off on an adventure in Hawaii with family challenge members and I was thinking I will be in and out by the next day, home safe and sound snuggling with my cat Nicholas. That is not what happened. I went into surgery and I had to stay there for ten days and I ended up with a steel trach that I currently have now. During my dilation; I had another larynx spasm that ended up breaking my thorax. This was my second experience of almost dying, I came really close. Once again I was not able to communicate verbally but had to write everything down on paper to everyone. The length of my first trach went all the way down to where my lungs were and I could not move. It was sutured in to keep it secured while my Thorax healed. Being in bad condition did not stop me from moving myself without the assistance of the nurses or technicians. I remembered how it was in 2010 and I did not want to stay one month in the hospital. This experience has taught me the importance of collaboration and the most skilled, educated people on earth do not know how to collaborate with each other or maybe not even know how to communicate with their patients. Many doctors do not listen to what the patient can teach them about the disease or the effects of the disease or the medications. While in the ICU I had three different teams who were there to help me, but could not agree on how to treat me. They argued, disrespected each other, and left me lying on my bed, not knowing what would be happening next. Each doctor proceeded to tell me something different while in my drugged state. My family could not be with me all the time while they tended to their own families and responsibilities. The fact that they lived three hours away was another factor. This left me trying to understand and communicate with the doctors by myself. I was angry, but couldn’t verbalize it and none of them had the patients to stand there and let me write it out my questions, concerns, or insights. That made me realize that we are all in such a hurry to get things done and find the answer that we are not truly listening to what is right there in front of us. I wasn’t so out of my mind that I couldn’t make a choice. I asked the teams of doctors to call my brother on the phone and tell him, so that there would be no confusion. My time in the hospital became a lot easier after the doctors respected me enough to respect my wishes; however, the stress of the situation left a bitter taste in my mouth; I came close to saying screw this. I quit! I did not quit, but I had the feeling of quitting in my heart. The warrior lady in me did not stop and I am continuing my fight for me.
Losing my voice, literally, has changed my view on becoming an advocate for me. Working in a collaborative team with doctors, family, and friends is vital for any chronically ill person. Being able to feel comfortable enough with your team players to say “I do not like what is being done, can we come up with a different plan” or “I would really appreciate the opportunity to do this myself” or even saying “I would like to share my experiences with you” is vital for the doctor/patient relationship. I do have a couple of doctors I can do this with and I am learning to do it my way with the other team members who have a harder time with my bluntness. Having my voice is important because while in ICU, something happened. The doctors started me on a treatment for Ritaxmab for my GPA (Wegener’s) and although the first cycle seemed to be working awesome, I began to have a bad reaction when the RN came to increase to increase the dosage. Within ten minutes of her turning up the flow, my jaw starting clinching tightly. I felt like I couldn’t breathe at all, my nose was running and I was in distress. I called for help; I made the RN stop the IV. Let me tell you, when your body is stressed beyond the max and you are trying to communicate with just writing, words do not come easily and it was difficult for the nurses to comprehend what I was trying to say. Thankfully the respiratory nurse came in and she understood. One of the members of the Rheumatologist department came into my room and had the audacity to argue with me about the common side effects of the drug. The doctor was trying to bully me into taking the drug. I boldly said no. Turns out that I cannot take that IV drug, now I am taking another drug to help me with my disease and it is working. That experience taught me that even though the doctors have the head knowledge in science and what the case studies show, doesn’t mean that they know everything. Listening to what the patients are experiencing and taking every opportunity to learn from the patient instead of relying on a case study, is very important. All patients should be respected and honored in their individuality. I wish more doctors could be in the same mind frame that my awesome ENT Dr. Anderson is in: “I take every patient that walks through my door as an opportunity to learn something”. I hope that my words can inspire more physicians to see each patient’s uniqueness and help the patients out there in the world to see their value and stand up for themselves and work together with their doctors and other team members.
I am happy to say that currently I am managing my disease well. I finally have permission to exercise and I have a great exercise band from the physical therapist to move with and I am slowly building up my endurance. My ultimate goal is to be able to go for a bike ride on some of the amazing bike parks that are around my area. I am seeing a therapist who is giving me amazing tools that I am sharing with family and friends. I am reading and researching nutrition for my disease. Though I did eat some Boston Cream Pie for breakfast this morning, I am implementing changes towards more healthy eating and I am doing the best that I can at this moment of my life.
When I experienced my first bout with joint pain and problems with breathing in the Winter of 2008, I did not expect it to lead me down the road it dead: to a place of contentment, grace, strength, and most important, endurance. Right now, I am waiting for July 10th when I head back up to Seattle University of Washington to see if they will do another dilation or the dissection surgery. I am loving on my cat Nicholas and volunteering with Living Ministries, and spending time with family and friends. I have a better quality of life with my illness than I ever did when I was considered healthy. Strange, but it is the truth.