TESTIMONY OF STEVEN KIELLEY
Romans 8:22
22We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24For in this hope we were saved.
Romans 7:24
24What a wretched man I am! Who will rescue me from this body that is subject to death?
I have heard it said that there is one thing in life that is certain and that is that there is nothing that is certain. I would like to take a few minutes and share with you some of the things that happened to me over the last several months.
Taking into consideration that the steps of a righteous man our ordered by the Lord and the fact that as a Christian I am covered over with Gods righteousness and not my own I will assume that these things I share were ordered by the Lord for not only my benefit but for others in and along my path.
This whole journey started on April 5th. It was a Tuesday and I had just finished with my morning Bible Study with a wonderful couple in Elkhorn. I had noticed early that day that my asthma seemed to be less responsive to my inhalers and I was getting shorter and shorter of air. As I left that this couples home that morning I could feel my lungs constricting, something not unusual, but not anything that the albuterol inhaler which is my emergency inhaler would normally rectify. However, none of the medications I normally took seemed to open my air ways.
Of course, I became somewhat anxious and called my pulmonologist and was instructed to go to Froedtert Hospital emergency room for evaluation and treatment. By the time I arrived there my breathing was such that it was all I could do to walk into the emergency room. I was immediately led in for evaluation. A respetory therapist was called into administer a nebulizer treatment, not the typical dose that I normally received but one with ten times the medication. There was no lasting change.
To give you an idea of how little air was entering into lungs my normal air intake on a breath spirometer is 2500. At this point it was 600 and continued to fall lower so that in a few hours I was down to 400. Of course, I was admitted and taken to a pulmonology unit for care. X-rays showed partial lung collapse and that other portions of my lung sacs would receive air but not release it. For the next four weeks my lungs would not open. Treatment after treatment yielded no success. I had just enough air to speak but not enough to walk about.
I was limited in movement from my bed to the bathroom. It was short time later after my admission that a new problem appeared. I could feel my airway constricting and closing off my airway. This was later diagnosed at Mayo Clinic as a Laryngospasm . It was described somewhat as a Charlie horse of the vocal chords. As my air was cut off it would cause a terrible sounding squeal as air was forced through the narrow passage.
Not only was my lung capacity very much compromised but now I had to fight to breathe even a small breath. I reached for the nurse call button. As I struggled for breath and waited, I wondered if this was going to be the end of my life. Later at Mayo Clinic a well-meaning physician wanted to comfort my anxiety and I was told not to panic because if they became to severe, I would pass out and at that time the spasm usually relaxes, and normal breathing would return.
I did not really find that comforting as I felt like I was drowning. When the nurse arrived, he immediately called an emergency response team and soon the room was full of staff. This would happen several times while I was at Froedtert. I remember at least three times where this team responded. I was confined to my bed and the alarm was placed on to make sure I did not move around. Because any movement would bring on another spasm. They would normally last about a half hour, but some would go as long as 55 minutes.
I was so weak and discouraged that I wanted to cry but realized I needed to refrain because of the lack of air that was needed to cry. It was during these times I wondered what Gods plan was. When I stayed in my bed and did not move, I felt perfectly normal. I could talk and make jokes with the staff. It was then that God began to lead person after person into my room, dear wonderful people that just wanted to share with me. I met several very special nurses and therapists. It seemed that even though I was flat on my back that God still allowed me to minister to others. Several of these nurses I still have contact with and share with them on a regular basis
For the two weeks of my confinement at Froedtert hospital I was confined to my bed only standing occasionally. Very seldom I ever left my room. I felt like I was a prisoner not only in my room, but I was imprisoned by my medical condition and imprisoned by these physical conditions. The staff ran a myriad of tests and seemed at a loss for an effective and successful treatment. They informed me that this no doubt would be a long process and that I should be prepared for a long recovery period. After the second week I was discharged home. I was given a walker to help me get around.
Basically, I was confined to a wheelchair or my walker with conveniently had a seat on it. My dear brother and my wife were tremendous blessings to me as several you were also. They had recommended at discharge a trip to Mayo Clinic for further evaluation. My lungs were still closed at about 600 when they should have been at 2500. I so missed church, I so missed worship, I missed fellowship and the ability to have the freedom that I had experienced previously. Watching on You Tube was not the same as standing side by side with the people I love.
Very special people like Mary Unz and Sandy Jones and her sister Beth texted me almost every day and sent me YouTube videos.
It was Good Friday and as I lay in my hospital bed, I felt discouraged as I knew everywhere around me people were remembering Good Friday and having communion together. It was at this moment a nurse walked into the room the two of us had talked at length before and I thought why not our own service. I asked if she would like to remember Good Friday with me and have our own church service together here right in this hospital room. My congregation was all around me consisting of me and this wonderful nurse. This nurse had been able to procure the needed elements and later that afternoon we shared together the Lords last supper right along with a miniature sermon.
However, God was not done for it was sometime a little later that my dear sister in the Lord, Lynn called and talked to me. She felt led to come to the hospital on Easter Sunday and bring a home cooked Easter dinner for me. As I had ministered to her family at the loss of her husband, she and her son Joey came to minister to me.
My wife worked that Easter Sunday, and I was planning on celebrating by myself watching Abundant Life’s Service on my phone. This dear lady and her son cooked me a huge ham dinner brought it to the hospital and even wheeled me down from my room to the cafeteria and together we celebrated resurrection day together. God knows where I am, God knows my desires and he uses wonderful people to be His hands and feet. He never neglects to come through.
I so very much appreciated the prayer chain and many others throughout the country who were interceding for me in prayer. Lisa and I also appreciated the many wonderful meals that were provided for us at home as well during the interval between hospitalizations.
One day stands out above the others that was so very special to me. I had been informed that they wanted to rule out any association with what was going on between the lung and heart. I already have a few problems there already. They decided to do a double heart cath. One coming into the heart from my artery in my wrist and the other coming from the artery in my neck.
I was very much troubled in the sense that I knew they would restrain me during this invasive catheterization. I had been having consistent thoracic spasms and feared what I would do if one came on during this procedure while I lay there awake. I was so exhausted from the continual spasms; I was weak from the lack of sleep. It was there in my room that the tears began to roll down my cheek and I asked God how much longer before these ends. Currently the hospital was very restrictive of visitors because of Covid. I felt very much alone.
It was then the door to my room opened, and my Nurse of the day entered. She saw the tear on my cheek and came at sat by my side. She gripped my hand in hers and asked me what was bothering me. The man part of me shrugged it off and said oh nothing. I am a preacher don’t you know; pastors can handle anything because they have more supernatural power than anyone else. Don’t laugh many do have the God complex.
It was then that God clearly spoke to my heart and told me what to do. I was to allow this person to minister to me as I had ministered to others. Little did I know that she had needs to? When a person gives to others God replenishes their needs, this was not about me, and this was about both of us.
I asked her if she would pray for me, as I heard her pray, I felt the warmth and sincerity of a person who ministered to people’s physical needs enter the realm of the spiritual. God showed me it’s not always about me giving to others it is also about allowing others to feel the thrill of giving as well. I shared with her my concern for the upcoming procedure the next day. She boldly stood up and said, “Steve before they come to get you, we will pray together, even if you are not my patient, I will be here for you.
It’s a little humorous this young girl was turning into a spiritual bulldog. That next day there was a knock on the door and the catheterization team was there to quickly wheel me downstairs. Unfortunately, Mercedes on this day was not my nurse. I was disappointed and allowed them to get me ready. Suddenly the door opened wide and there stood Mercedes that is her name came in and politely asked everyone to leave. She simply stated that we were going to pray before they took me downstairs, and they could either stay in the room or wait outside until we were done. I was beaming inside, I was so proud of what I saw taking place, God was working in her life and in the same moment restoring my joy and faith.
We continue in that precious ministry to each other as we encourage one another to reach the goals that God has placed before us. This time of sharing and ministry created a bond between us. She also had things in her life that I could help her with.
Ministry does not just come only from the pulpit it goes forth from every direction through every person who allows it to shine forth from a compassionate heart and willing hands. That I guess they call it outreach ministry.
Even after all this time many of the ministries of encouragement that started during that hospital stay continue. The time of my discharge from Froedtert had come. Even it seemed that we had hit a roadblock and they had done all they could.
At home my condition did not improve. We made the decision to continue further treatment at Mayo Clinic as doctors at Froedtert had recommended.
I would like to stop and thank my wife Lisa for the many times she talked me off the ceiling as she held my hand through these terrible attacks at home. She was a faithful and true partner and confidant. My brother pitched in as well as he volunteered to transport me to Mayo clinic in Rochester MN.
My brother covered the first part of this trip, and my wife came and covered the second part. It now had been about a month since this had all started. My dear brother and I loaded up the walker and all the emergency equipment and headed off to Mayo. I was very apprehensive on how this trip would go and what would happen if I had these spasms while we were on the road.
On the way we stopped at a wayside to make a pit stop. I would take my walker and would walk a little way and then stop and sit trying to catch my breath hoping not to initiate another spasm. This I did over and over. It was on the way back that all this activity caught up with me. I could feel the spasm coming on, the restriction in my throat the increased wheezing and the airway slowly closing, by now I had no problem identifying the onset of symptoms.
My airway began to close off and I began to panic. I was between the car and the rest building. My poor brother or should I say my caregiver on this trip was going to share in this baptism of fire. I barely made it to the car before my air way began to nearly close completely. I could force with considerable effort air past my vocal cords and again force it out. This spasm was especially bad because I was already short of breath by even this small amount of exertion. All of this was happening in public view. We had gone over our plan of action before we left my home with what to do when this happened.
As I was struggling to breathe the sound that came from my airway surely scared both of us and increased an immediate call to action. There were no hospitals nearby no time to call an ambulance. We needed to deal with this ourselves.
One of the things that I treated this with was a nebulizer which runs off 120 volts. Rick quickly found the converter in my travel bag and hooked the chord into the cigarette lighter, we were both panicking, and I was hoping that we would not blow a fuse. I used my spray nitro glycerin, and then I used my emergency inhaler in the meantime, and we finally got it hooked up to the nebulizer. I sucked on it like a mad man, but the spasm was not responding the way we had hoped it would. I had realized over the last month that should I say as they say in the west, we had to ride this bronc to the end. After a period of time this spasm subsided, this process took at least twenty minutes. People stopped and stared at us as they walked by and heard the terrible sound coming from my airway.
We made it to Rochester MN, and we finally settled into our motel room. We arrived at our first appointment the next day. My brother wheeled me everywhere we went, occasionally I used the walker if it was a short distance. I was able to get there and back that day without an attack.
That night as I showered it happened again and this one was also severe. I was so tired, and I was so weak.
We had decided that with parking condition at the clinic to use the shuttle bus to and from Rochester. Our next appointment was with the pulmonologist. It was on Wednesday very early in the morning. Please understand at this time my lungs would still not open. I was still at averaging 400 to 600 on the spirometer when I should have been at 2400. I had almost grown accustomed to living without being able to breathe deeply. I so missed the ability to sing, I could never even sing more than a few words before I ran out of breath.
That morning on the bus as we headed into the city of Rochester, I could again feel my chest tightening and my throat begin to close off. In my mind I pleaded with God to stop this attack so it would not happen in front of all these people. Please, please, God, I prayed, I tried guided imagery and controlled breathing and by the grace of God I was able to hold it off. We were met at the bus with a wheelchair and Rick pushed me to the eighth floor waiting room of the Pulmonology clinic. It was 6:45 a.m… I and others that were there would be the first patients to meet with the pulmonologists that day at 7:00 a.m…
As we sat waiting suddenly, I could not keep the spasm at bay any longer. It came on with full force. I grabbed Ricks arm and let him know that it was on its way and as he tried to explain what was taking place to the staff member at the desk, he needed to explain no further for it could not be kept secret. Patients looked at me with deep concern as they heard the horrific sound of my breathing. Staff came running from inside the clinic and they pushed me into an examine room. By this time the whole team of pulmonologist were present.
Again, I cannot express how terrible these spasms can be. Tears were running down my face, I could not speak, I can only nod yes or no. The supervising doctor, the head of the clinic was there, and it was he that placed a solid diagnosis on this condition.” This is a Laryngospasm I know exactly what this is he said I have seen this before”. They gave me injections of epinephrine and called an ambulance which immediately took me to St Mary’s hospital, which is a part of Mayo Clinic.
This doctor spoke directly to me and spoke in a soft reassuring voice. Steve you may have to have a tracheotomy but do not be afraid this will not be permanent. The only other thing they had to offer if the spasm continued to close off the air way completely was to intubate me.
That morning these attacks came in a cluster, one in the clinic, one on the way and another in emergency room. Up to this time I had not seen my brother cry before, but as the next spasm came in the emergency room, I could see him fighting his own tears as my own ran down my cheeks. I kept telling myself that I must force myself not to cry. That would be impossible during such a spasm. From this time on my brother was strong advocate for me. Several times I felt sorry for the doctors as he talked with them outside the room and demanded faster action. At this point I was admitted to St Mary’s where I would spend another week confined to my room. It seemed that these spasms came about four times a day.
The nurses did not want me on the pulmonology floor but wanted me in the ICU. For they felt helpless to treat this, for conventional things such as inhalers were not very effective. Three times while I at St Mary’s the Emergency Response Team was called to my room. Again, I was like a Jekyll and a Hyde, when I was sedate and not moving, I would seem perfectly normal.
Again, I was able to minister to staff which helped me to keep my sanity.
I was told by the doctors that this was a long process, and I should expect to have to deal with these spasms for a long period of time and that there was just no easy fix. Believe it or not the people that helped me the most to deal with the spasms were the speech therapists who had dealt with laryngeal spasms in the past. They showed me techniques that I could use during these spasms to shorten their length.
Several things came to play in my favor. Before that first major event at Froedtert we had applied for a drug that really helps people with severe asthma called Dupixent. For severe asthma it is given as an injection twice monthly. Since the injections our so costly it is difficult to get insurance companies to pay for them. Each injection is 3500. I was told by my pulmonologist I would need to be on these injections indefinitely. We applied to our insurance company. The insurance company quickly turned us down. However, we again submitted this request while I was admitted at Froedtert hospital, and they reconsidered and agreed to cover all but thirty-five dollars for each injection. I received my first injection while I was at Froedtert Hospital, it starts being effective after about 3 to 6 weeks. By the time I was at Mayo I was on my third injection. I do believe it was Gods healing hand which came through the many prayers of the saints and God’s making a way for this injection which has made a huge difference in my recovery. During the end of my stay at Mayo my lungs began too gradually open. As they began to stay open longer my spasms seemed to decrease in frequency. They never quite understood what was causing the spasms, they did note that my vocal cords were also dysfunctional. One focal chord does not operate well at all. Maybe if they both worked, I could sing bass instead of high tenor.
After my discharge from Mayo neurology placed an order for a Sweat Test. This test would take place several weeks later at Mayo Clinic. I was beginning to feel much better by the time came for I and my brother to load up the car and make the trip. I had no idea what was involved in these several appointments. The first test dealt with all types of wires and probes which were analyzing neurological data. This was not so unusual, and I felt totally at ease during the procedure which lasted about an hour. The second test was a day later and was unlike anything I have ever experienced. I was told that I was to disrobe, I was to have nothing on my entire body. They did place a loin cloth me for decency. I was surprised when the clinician brought in a spray can and described the procedure. They sprayed a blue type of powder from my feet to my head. They did not spray around my eyes or nose or the loin cloth. I basically was covered in blue. I was given a thermometer to place in my mouth and then as I lay flat upon this gurney I was rolled into a small oven and left to bake in a climate that felt much like Arizona on a very hot day. It was very warm to lay the least. The goal was to raise my body temperature to over a hundred degrees which would make sure that I would sweat profoundly. The sweat would turn the areas it touched to a different color blue. With this test they could determine if there were any areas on my body which were not receiving the proper nerve reaction to heat. If some areas did not sweat, it might mean that there was a neurological problem somewhere in the mix.
After about forty-five minutes I had reached the desired temperature and I was removed from the oven. I could not help but tell the clinician that I did this same procedure every thanksgiving with my turkey. After I was outside the oven a picture was taken from above and given to the neurologist. I was then ushered into a room with a shower and a mirror and given the things I needed to clean up. I glanced at myself in the mirror and stood in amazement. There in the mirror was a giant smurf. What a job it was to clean myself up that day. When I had my follow up doctors’ appointment back in Milwaukee, I had to explain why my toenails were still blue. These tests came back normal. So, the conclusion of the matter is that these truly were Laryngospasm’s
Over the last several weeks things have improved dramatically. I thank God every day for the ability to fill my lungs with air, and to have freedom from the constant spasms that choked off my ability to breathe. As I share this testimony, I can walk a mile at a time. I enjoy the freedom to live a normal life. I still have contact with those I ministered to at the hospital, and they have become good friends. Remember God is good, and He is a stronghold in the day of trouble, and He knows them that trust in Him.
Oh, by the way one of the songs I would listen to the most while this was going on was, “Breathe”, by Hillsong.
He certainly is the most basic and sustaining element of my life.