Early the next morning, just the male pulmonologist enters my ICU suite. Immediately, he begins again his rant about me not needing a ventilator to breathe. However, this morning his words are less jagged and seem to have a hollowness to them. He seems a bit distracted as he speaks. He finally changes courses. He begins to say I need an extensive neurology work-up. We need to find the cause of my muscle weakness. We need to know if it is the muscles, the nerves, the neuromuscular junctions or both the nerves and muscles causing my symptoms. He goes on to say if I have a neuromuscular disease, I will need a ventilator to breathe for the rest of my life. Moreover, disconnecting me from the ventilator might actually kill me.
As the physician continues his long monologue, I am left dumbstruck. It seems as though new wisdom and knowledge have entered this man. The doctor is finally listening to the words I speak. He finally seems to be understanding that perhaps indeed I need a ventilator to breathe. I cannot help but send praises up to God. I know He heard my prayers last night. I know He instructed the physician to do research about various disease affecting the nerves and muscles. Gratitude overflows my heart. Tears fill my eyes, but I fight with all my strength to hold them back.
As the clinician finishes up his long speech, he says he is not going to disconnect me from my ventilator today. He is going to wait until I can have an examination and testing done by the neurology department. When an exact cause of my muscle weakness can be determined, only then will a program be set up in which I start weaning from the ventilator. However, if a neuromuscular disease is causing my diaphragm weakness, I will have to be in the ventilator for the rest of my life. The physician leaves my room.
Nothing too exciting happens the rest of the day. Infectious disease doctors come and visit me. They give me the green light for being discharged. In the afternoon, I leave the hospital having received no antibiotics for my respiratory infections. I wonder why I was ever admitted to the hospital if nothing was going to be done for me. This was the strangest hospital admission I have ever had. However, I do know that God used this situation to cast out one of my biggest fears. And praise be to God, I think I pass the test! It is only through God's grace, mercy and love that I am able to continue my journey to spiritual maturity.
"We have come to know and have believed the love which God has for us. God is love, and the one who abides in love abides in God, and God abides in him. By this, love is perfected within us, so that we may have confidence in the day of judgment; because as He is, so also are we in this world. There is no fear in love; but perfect love casts out fear, because fear involves punishment, and the one who fears is not perfected in love." (1 John 4:16-18)
(Link to Part One click here)
Thursday, August 30, 2018
Thursday, August 23, 2018
He that fears is not made perfect in love (Part Three)
When I arrive in my hospital room, it is the usual onslaught of hospital employees. The nursing assistant records my vitals, the respiratory therapist checks my ventilator and records the ventilator settings, the nurse asks an endless stream of questions as she registers me, etc. The night quickly turns into morning. As the early rays of the sun illuminate the eastern sky, my friends, Mr. and Mrs. Pulmonologists, enter my room.
The encounter proceeds much like the previous day. I am told over and over again I do not need to be on a ventilator. I am told I need to begin weaning from the ventilator. As much as I protest my need for the ventilator to breathe, the clinicians ignore my remarks. I am told a number of other specialists need to see me before I am to be discharged. I am happy to hear the word “discharge”, but I am aggravated that I have been admitted to the hospital if no treatment was going to be given for my respiratory infections. I am very grateful when the clinicians leave my room.
The day drags by. Only some of the medical team visits me. As I sit pondering my meeting with the pulmonology group, God suddenly reminds me of my dear, beloved pulmonologist. At an appointment earlier in the year, my pulmonologist randomly blurts out during our visit that I am going to be on a ventilator for the rest of my life. This news was not a new revelation. I have known since being started on BiPAP in December 2016 that my respiratory failure would one day lead me to need a ventilator to breathe. Since there is no cure for my diaphragm muscle weakness, once I started using a ventilator to breathe, I would need it for the rest of my life. However, the bluntness of my doctor’s remark threw me off balance. Her words had finality to them. Her words seemed as though they were a life sentence. I always have hoped that one day I would miraculously be healed from my health afflictions. But the harshness of my pulmonologist’s words quench the small flicker of hope which always seems to burn within me. As I recall this memory to mind, I suddenly am overcome with laughter. I instantly think, “Why am I worried about this hospital’s pulmonology team? Who am I going to trust, my amazing pulmonologist or these two random doctors?” My heart and mind are set at ease. The fear which had gripped my soul vanishes. I thank God for placing this memory in my head. I thank God for continuing to guide and lead me.
Soon, it is evening. The infectious disease team still has to visit me to clear me for discharge. My nurse calls the infectious disease team. It is decided I will be staying another night in the hospital. I am terribly bummed; however, I am absolutely exhausted from getting no sleep the night before. I know being discharged late at night would greatly exacerbate my Mitochondrial Disease. Moreover, it is Shabbat. I would much rather spend an additional night and day in the hospital if it means I can observe Shabbat by reading God's Word, watching Shabbat services online and praying. I settle in for the night.
Unable to sleep due to extreme fatigue, I start praying for my pulmonologists. I pray God will open their hearts and minds that I need my ventilator to breathe. I pray God gives them wisdom and leads them. I pray no patient will ever have to endure what I am enduring. I know I need a ventilator to breathe. However, someone else with less medical knowledge might actually heed the doctors’ advice, which will ultimately lead to complications and possibly death. I thank God for the medical knowledge I have. I thank God for His protection. As the last of my words leave my heart and mind, I drift off to sleep.
(Link to Part Four click here)
The encounter proceeds much like the previous day. I am told over and over again I do not need to be on a ventilator. I am told I need to begin weaning from the ventilator. As much as I protest my need for the ventilator to breathe, the clinicians ignore my remarks. I am told a number of other specialists need to see me before I am to be discharged. I am happy to hear the word “discharge”, but I am aggravated that I have been admitted to the hospital if no treatment was going to be given for my respiratory infections. I am very grateful when the clinicians leave my room.
The day drags by. Only some of the medical team visits me. As I sit pondering my meeting with the pulmonology group, God suddenly reminds me of my dear, beloved pulmonologist. At an appointment earlier in the year, my pulmonologist randomly blurts out during our visit that I am going to be on a ventilator for the rest of my life. This news was not a new revelation. I have known since being started on BiPAP in December 2016 that my respiratory failure would one day lead me to need a ventilator to breathe. Since there is no cure for my diaphragm muscle weakness, once I started using a ventilator to breathe, I would need it for the rest of my life. However, the bluntness of my doctor’s remark threw me off balance. Her words had finality to them. Her words seemed as though they were a life sentence. I always have hoped that one day I would miraculously be healed from my health afflictions. But the harshness of my pulmonologist’s words quench the small flicker of hope which always seems to burn within me. As I recall this memory to mind, I suddenly am overcome with laughter. I instantly think, “Why am I worried about this hospital’s pulmonology team? Who am I going to trust, my amazing pulmonologist or these two random doctors?” My heart and mind are set at ease. The fear which had gripped my soul vanishes. I thank God for placing this memory in my head. I thank God for continuing to guide and lead me.
Soon, it is evening. The infectious disease team still has to visit me to clear me for discharge. My nurse calls the infectious disease team. It is decided I will be staying another night in the hospital. I am terribly bummed; however, I am absolutely exhausted from getting no sleep the night before. I know being discharged late at night would greatly exacerbate my Mitochondrial Disease. Moreover, it is Shabbat. I would much rather spend an additional night and day in the hospital if it means I can observe Shabbat by reading God's Word, watching Shabbat services online and praying. I settle in for the night.
Unable to sleep due to extreme fatigue, I start praying for my pulmonologists. I pray God will open their hearts and minds that I need my ventilator to breathe. I pray God gives them wisdom and leads them. I pray no patient will ever have to endure what I am enduring. I know I need a ventilator to breathe. However, someone else with less medical knowledge might actually heed the doctors’ advice, which will ultimately lead to complications and possibly death. I thank God for the medical knowledge I have. I thank God for His protection. As the last of my words leave my heart and mind, I drift off to sleep.
(Link to Part Four click here)
Tuesday, August 21, 2018
He that fears is not made perfect in love (Part Two)
As my encounter with the pulmonologist continues, he asks a barrage of questions. With as much grace, calmness and respect as I can muster, I try to answer all the physician’s questions. Oddly, the doctor considers almost all my answers lies. “People do not develop respiratory failure. You must have had an accident or had an infection which required the use of invasive ventilation. You did not just get a tracheostomy tube. You first were sedated, and a tube was inserted through your mouth and down into your lungs. Then after invasive ventilation was used and proven effective, then you received your tracheostomy tube. You just are not remembering things right. You have been on a ventilator too long. It’s time to pull out your trach and disconnect you from your vent.”
The interaction with the clinician lasts about 20-30 minutes. In addition to fear, I am frustrated. Despite trying my best to explain my medical history, my words seem to have fallen on deaf ears. I want to flee the confines of this hospital. I want to escape to a far off place and never encounter another medical professional ever again. But, as much as I wish to be on a catamaran sailing the seas of the Caribbean, I know this is all a pipe dream. I need my ventilator to breathe; I need treatment for my respiratory infections. Not knowing what else to do, when the two physicians leave, I click open my iPad and start reading God’s Word.
As I am in the midst of my daily Scripture reading, a person from the hospital’s clergy staff enters my room. She introduces herself and starts asking the usual introductory questions—what’s my name, where do I live, why am I here in the emergency department, etc. The text on my iPad screen catches her eye. She asks me what I am reading. I reply, “Psalm 59.” The woman seems surprised that I am reading the Bible. But nonetheless, she bends over and starts reading the passage. She remarks how the Psalms always give her comfort. I explain I was just doing my daily Bible reading. The woman immediately stops in her tracks and appears as though she might fall over from shock and awe. “You read the Bible every day!?” I answer, “Yes. I try to read through the Bible once every three months. I read five chapters from the books of history, five chapters from the prophets, two Psalms, one chapter from the books of wisdom and four chapters from the New Testament every day.” The woman’s eyes grow wide. She is in disbelief that anyone would commit that much time to studying God’s Word and seems to bestow upon me great reverence. She quickly says a short prayer and leaves the room.
As I sit in my bed in a good humor, I thank God for instructing me to have His Word open. I thank God for sending the clergy woman my way. I silently laugh at the woman’s expressions during our visit. However, I am saddened that anyone, especially someone representing God, would be awestruck by a person reading the Bible. I pray my interactions with the woman inspires her to commit more time to reading and studying God’s Word.
As the hours roll by and morning turns into night, I begin to wonder if a room will ever open up for me upstairs. I have been informed I am going to be admitted to the medical center. Sleep tugs at my eyes lids, and my body starts relaxing. Very late in the night, a nurse walks into my room. It is time to be transferred to the progressive intensive care unit. It is time to start another chapter of this hospital excursion.
(Link to Part Three click here)
The interaction with the clinician lasts about 20-30 minutes. In addition to fear, I am frustrated. Despite trying my best to explain my medical history, my words seem to have fallen on deaf ears. I want to flee the confines of this hospital. I want to escape to a far off place and never encounter another medical professional ever again. But, as much as I wish to be on a catamaran sailing the seas of the Caribbean, I know this is all a pipe dream. I need my ventilator to breathe; I need treatment for my respiratory infections. Not knowing what else to do, when the two physicians leave, I click open my iPad and start reading God’s Word.
As I am in the midst of my daily Scripture reading, a person from the hospital’s clergy staff enters my room. She introduces herself and starts asking the usual introductory questions—what’s my name, where do I live, why am I here in the emergency department, etc. The text on my iPad screen catches her eye. She asks me what I am reading. I reply, “Psalm 59.” The woman seems surprised that I am reading the Bible. But nonetheless, she bends over and starts reading the passage. She remarks how the Psalms always give her comfort. I explain I was just doing my daily Bible reading. The woman immediately stops in her tracks and appears as though she might fall over from shock and awe. “You read the Bible every day!?” I answer, “Yes. I try to read through the Bible once every three months. I read five chapters from the books of history, five chapters from the prophets, two Psalms, one chapter from the books of wisdom and four chapters from the New Testament every day.” The woman’s eyes grow wide. She is in disbelief that anyone would commit that much time to studying God’s Word and seems to bestow upon me great reverence. She quickly says a short prayer and leaves the room.
As I sit in my bed in a good humor, I thank God for instructing me to have His Word open. I thank God for sending the clergy woman my way. I silently laugh at the woman’s expressions during our visit. However, I am saddened that anyone, especially someone representing God, would be awestruck by a person reading the Bible. I pray my interactions with the woman inspires her to commit more time to reading and studying God’s Word.
As the hours roll by and morning turns into night, I begin to wonder if a room will ever open up for me upstairs. I have been informed I am going to be admitted to the medical center. Sleep tugs at my eyes lids, and my body starts relaxing. Very late in the night, a nurse walks into my room. It is time to be transferred to the progressive intensive care unit. It is time to start another chapter of this hospital excursion.
(Link to Part Three click here)
Thursday, August 16, 2018
He that fears is not made perfect in love (Part One)
As the years have rolled by, there have been things in which I have feared. I feared not being able to complete my university studies, I feared being stuck with insurmountable student loans, I feared having to live with my parents for the rest of my life, and the list of things I feared could go on and on. It seems each and every item I have ever feared, God has made it come to fruition. With each fear in which I was forced to face, I discovered only with God and His guidance could I overcome the obstacle. As much as I have tried over and over again to strike fear out of my life, new fears have silently crept in.
In April 2017, when I was researching getting a tracheostomy, the one thing which came across my radar was reading about doctors who denied their neuromuscular disease patients tracheostomies and mechanical ventilation and insisted they could breathe on their own. Unfortunately, most of the patients, if not all, have passed away when high carbon dioxide levels built up in their bodies due to respiratory muscle weakness. As I read research papers and personal accounts, I suddenly developed a fear that one day, I too, would come across a physician who would insist I did not need a tracheostomy. This fear has lingered with me. Every time I see a new physician, I have a bit of panic which courses through my veins. “Will this medical professional decide I do not need a tracheostomy and ventilator to breathe? Will I have to fight with all my might to escape the doctor’s clutches to save my life?” Like all fears in my life, God has forced me to face this terror head on.
After struggling for several months with endless respiratory infections, I sought out a new pulmonologist. I hoped, perhaps, this new physician would help me attain the proper antibiotics to fight off the infections raging in my lungs. From the moment the appointment began, the clinician was extremely concerned about my coughing and difficulty breathing. “Unfortunately, this is not something I am going to be able to treat in the outpatient setting. I am going to need to admit you to the hospital and start you on IV antibiotics. Is it ok if I send you to the emergency department with orders to treat your infections?” As much as I did not want to spend another moment in a hospital, I agreed to another hospital expedition if it meant I would finally have relief from my respiratory infections. The hospital this physician was sending me to was a new facility for me. I do not like change and do not like new environments. But, swallowing my apprehensions, I voyaged forth to the new medical center.
Upon arriving at the emergency department, everything went smoothly. I was quickly whisked away to an examination room. Tests were ordered. Despite the new surroundings and the new medical staff, everything was going well. I was trying desperately to calm my nerves and relax. But foreboding filled my soul. I was lamenting my decision to come to the hospital. I did not want to be here. I just wanted to go home. As I was chastening myself for coming to the hospital, a male and female physician walked into my room.
In an instant, the male doctor started speaking. “Why do you have a trach? There is no reason you need a trach. You can breathe on your own. We need to take you off your ventilator and pull out your tracheostomy tube. There is no reason you need a ventilator to breathe.”
As the male clinician continued his long monologue, I felt as though I was free falling. “Am I hearing all this correctly? Is this man serious? This man cannot be a pulmonologist. This man cannot assume that any normal person would want to be on a ventilator if he/she did not need it to breathe.” My head was spinning. My heart was racing. Having a doctor who wants to disconnect me from my ventilator is one of my biggest fears. Here I was connected to monitors and trapped in a tiny emergency department room with two physicians blocking the door. In a panic, I sent up an urgent prayer, “Oh, LORD Jesus, please don’t let them kill me!”
(Link to Part Two click here)
In April 2017, when I was researching getting a tracheostomy, the one thing which came across my radar was reading about doctors who denied their neuromuscular disease patients tracheostomies and mechanical ventilation and insisted they could breathe on their own. Unfortunately, most of the patients, if not all, have passed away when high carbon dioxide levels built up in their bodies due to respiratory muscle weakness. As I read research papers and personal accounts, I suddenly developed a fear that one day, I too, would come across a physician who would insist I did not need a tracheostomy. This fear has lingered with me. Every time I see a new physician, I have a bit of panic which courses through my veins. “Will this medical professional decide I do not need a tracheostomy and ventilator to breathe? Will I have to fight with all my might to escape the doctor’s clutches to save my life?” Like all fears in my life, God has forced me to face this terror head on.
After struggling for several months with endless respiratory infections, I sought out a new pulmonologist. I hoped, perhaps, this new physician would help me attain the proper antibiotics to fight off the infections raging in my lungs. From the moment the appointment began, the clinician was extremely concerned about my coughing and difficulty breathing. “Unfortunately, this is not something I am going to be able to treat in the outpatient setting. I am going to need to admit you to the hospital and start you on IV antibiotics. Is it ok if I send you to the emergency department with orders to treat your infections?” As much as I did not want to spend another moment in a hospital, I agreed to another hospital expedition if it meant I would finally have relief from my respiratory infections. The hospital this physician was sending me to was a new facility for me. I do not like change and do not like new environments. But, swallowing my apprehensions, I voyaged forth to the new medical center.
Upon arriving at the emergency department, everything went smoothly. I was quickly whisked away to an examination room. Tests were ordered. Despite the new surroundings and the new medical staff, everything was going well. I was trying desperately to calm my nerves and relax. But foreboding filled my soul. I was lamenting my decision to come to the hospital. I did not want to be here. I just wanted to go home. As I was chastening myself for coming to the hospital, a male and female physician walked into my room.
In an instant, the male doctor started speaking. “Why do you have a trach? There is no reason you need a trach. You can breathe on your own. We need to take you off your ventilator and pull out your tracheostomy tube. There is no reason you need a ventilator to breathe.”
As the male clinician continued his long monologue, I felt as though I was free falling. “Am I hearing all this correctly? Is this man serious? This man cannot be a pulmonologist. This man cannot assume that any normal person would want to be on a ventilator if he/she did not need it to breathe.” My head was spinning. My heart was racing. Having a doctor who wants to disconnect me from my ventilator is one of my biggest fears. Here I was connected to monitors and trapped in a tiny emergency department room with two physicians blocking the door. In a panic, I sent up an urgent prayer, “Oh, LORD Jesus, please don’t let them kill me!”
(Link to Part Two click here)
Tuesday, August 14, 2018
Fighting to the end
As I begin my university studies, one of my first classes is an ethics class. In general, my ethics (being Bible-based) do not correlate with the rest of the world. However, since this class is required for graduation, I bear down and give the course my best effort.
A portion of the class includes meeting weekly in small groups with 8-10 other students. We discuss a topic related to that week’s lecture material. One of the most memorable questions posed in the class was this: If you are at the end of life, do you keep trying medical treatments and procedures, or do you live out the rest of your days without medical intervention? When I hear this question, I nearly start laughing. I think, “Are you serious!? There is only ONE answer. Of course you would continue pursuing medical intervention until the last possible moment. Why would anyone just give up!?”
As soon as the floor is open for discussion, I voice my opinions. “Medicine is constantly changing, constantly evolving. Every day, every week, every month there are new medical advances and new treatment options. Even if a medicine only allows you to live an extra six months, in six months there might be a procedure available to prolong your life another 1-2 years. If you give up, you give up the opportunity to continue comforting and loving your family.” I think there would be no rebuttal to my monologue. However, I am very wrong.
Almost as soon as I close my mouth, a male classmate responds, “I absolutely would not go through any medical invention if I was at the end of life. I would use every moment to be with my family. Why waste time and energy trying to prolong the inevitable? Enjoy the time you have left.” I am left dumbfounded by his response. I cannot believe that anyone would just “give up”. The discussion continues for another 30 minutes with no one changing their stance on the issue.
This experience happened many years ago. I had long forgotten about it. This spring, as I was in the midst of trying to get medical attention for my respiratory infections and pancreatitis attacks, God suddenly placed this memory in my head. I instantly realized although my health had greatly changed, my stance on seeking medical intervention and fighting to live every day has not changed. As I reflected back in the last year, I realized I had a choice in May 2017 to not get a tracheostomy and to not use invasive ventilation to breathe. I was at the end of my life. If I would have given up and declined medical intervention, I would have been dead a long time ago. But, this is not who I am. God gave me a fighting spirit, a spirit which will not give up hope, a spirit which will not take “no” as an answer. I have always fought and will continue to fight to make it through each day. There is so much work to do for God. When God decides to call me Home, that is the day when I shall go. In the meantime, I will use His strength and His guidance to continue to keep on keeping on, serving Him in all that I do.
A portion of the class includes meeting weekly in small groups with 8-10 other students. We discuss a topic related to that week’s lecture material. One of the most memorable questions posed in the class was this: If you are at the end of life, do you keep trying medical treatments and procedures, or do you live out the rest of your days without medical intervention? When I hear this question, I nearly start laughing. I think, “Are you serious!? There is only ONE answer. Of course you would continue pursuing medical intervention until the last possible moment. Why would anyone just give up!?”
As soon as the floor is open for discussion, I voice my opinions. “Medicine is constantly changing, constantly evolving. Every day, every week, every month there are new medical advances and new treatment options. Even if a medicine only allows you to live an extra six months, in six months there might be a procedure available to prolong your life another 1-2 years. If you give up, you give up the opportunity to continue comforting and loving your family.” I think there would be no rebuttal to my monologue. However, I am very wrong.
Almost as soon as I close my mouth, a male classmate responds, “I absolutely would not go through any medical invention if I was at the end of life. I would use every moment to be with my family. Why waste time and energy trying to prolong the inevitable? Enjoy the time you have left.” I am left dumbfounded by his response. I cannot believe that anyone would just “give up”. The discussion continues for another 30 minutes with no one changing their stance on the issue.
This experience happened many years ago. I had long forgotten about it. This spring, as I was in the midst of trying to get medical attention for my respiratory infections and pancreatitis attacks, God suddenly placed this memory in my head. I instantly realized although my health had greatly changed, my stance on seeking medical intervention and fighting to live every day has not changed. As I reflected back in the last year, I realized I had a choice in May 2017 to not get a tracheostomy and to not use invasive ventilation to breathe. I was at the end of my life. If I would have given up and declined medical intervention, I would have been dead a long time ago. But, this is not who I am. God gave me a fighting spirit, a spirit which will not give up hope, a spirit which will not take “no” as an answer. I have always fought and will continue to fight to make it through each day. There is so much work to do for God. When God decides to call me Home, that is the day when I shall go. In the meantime, I will use His strength and His guidance to continue to keep on keeping on, serving Him in all that I do.
Thursday, August 9, 2018
New found fame
For many of my younger years, I yearned to be noticed. I tried hard to make a positive impression on people and attempted to always be memorable. However, time and time again, people would rarely recall my presence. When my health started to take a nose dive, it was continually frustrating not having doctors remember me (and thus they would often forget what was discussed at previous appointments).
When my illness continued to advance, and I now needed to use a wheelchair, medical personnel and other people in the community started remembering me. Their memories would often not be crisp, but they would tell me they recalled meeting me. Doctors would recognize my face, but my medical history was often not called to mind. Although I was enjoying my new found fame, I also did not enjoy it. I often tried to blend into the crowd. If I needed to slip into the grocery store, I often kept my head down and hoped no one would recognize me. I just wanted to get in and out of the building quickly before my symptoms flared up.
Now, as my medical ailments have left me using a ventilator, there is no hiding. During a recent emergency department (ED) visit, the triage nurse tells me she remembers me and my last visit to the ED. I am a bit dumbfounded. I am not a frequent visitor to this hospital. My last visit to this ED was eight months ago. And prior to that, I visited this ED a year ago. (I do not know which ED encounter she was my triage nurse for.) I try to calculate how many people this triage nurse must have seen in the last 8-12 months. This is one of the busiest EDs in the country! My mind cannot comprehend how many patients must have passed through this nurse’s triage station. But despite all these people, she remembers me and my medical history!
Similar scenarios have played out over and over again since getting a tracheostomy and needing invasive ventilation. EVERYONE remembers me! I cannot go anywhere without people taking note of me in a wheelchair and using a ventilator. In an odd sense, I understand what it must be like to be a celebrity. You cannot go anywhere without folks staring and observing your presence. As much as most people long for this kind of attention, I much prefer being forgettable. What joy and pleasure it was to not have people gape at me. What a relieve it was to be able to blend into the background.
On a positive note, I now have to be constantly on guard, monitoring my actions and words. I know everything I do is noticed by the folks around me. Everything I do makes a memorable impression. No longer being invisible means that I continually have to strive to be a good representative of Christ. Since God has placed me in this position of new found fame, I shall make the most of it and try to glory Him in all that I do. “Whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks through Him to God the Father” (Colossians 3:17).
When my illness continued to advance, and I now needed to use a wheelchair, medical personnel and other people in the community started remembering me. Their memories would often not be crisp, but they would tell me they recalled meeting me. Doctors would recognize my face, but my medical history was often not called to mind. Although I was enjoying my new found fame, I also did not enjoy it. I often tried to blend into the crowd. If I needed to slip into the grocery store, I often kept my head down and hoped no one would recognize me. I just wanted to get in and out of the building quickly before my symptoms flared up.
Now, as my medical ailments have left me using a ventilator, there is no hiding. During a recent emergency department (ED) visit, the triage nurse tells me she remembers me and my last visit to the ED. I am a bit dumbfounded. I am not a frequent visitor to this hospital. My last visit to this ED was eight months ago. And prior to that, I visited this ED a year ago. (I do not know which ED encounter she was my triage nurse for.) I try to calculate how many people this triage nurse must have seen in the last 8-12 months. This is one of the busiest EDs in the country! My mind cannot comprehend how many patients must have passed through this nurse’s triage station. But despite all these people, she remembers me and my medical history!
Similar scenarios have played out over and over again since getting a tracheostomy and needing invasive ventilation. EVERYONE remembers me! I cannot go anywhere without people taking note of me in a wheelchair and using a ventilator. In an odd sense, I understand what it must be like to be a celebrity. You cannot go anywhere without folks staring and observing your presence. As much as most people long for this kind of attention, I much prefer being forgettable. What joy and pleasure it was to not have people gape at me. What a relieve it was to be able to blend into the background.
On a positive note, I now have to be constantly on guard, monitoring my actions and words. I know everything I do is noticed by the folks around me. Everything I do makes a memorable impression. No longer being invisible means that I continually have to strive to be a good representative of Christ. Since God has placed me in this position of new found fame, I shall make the most of it and try to glory Him in all that I do. “Whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks through Him to God the Father” (Colossians 3:17).
Tuesday, August 7, 2018
Lost..scared...how did this happen?
It is another day and another day in which a doctor decides my coughing and shortness of breath are worthy of a hospital admittance. Upon arriving at the admissions desk, I am told there are no hospital beds. The admissions department closes shortly; I will have to go to the emergency department to wait for a bed.
Upon arriving at the emergency department (ED), I am gasping, wheezing and coughing. As soon as the triage nurse sees me, she immediately tells the ED receptionist she is taking me directly back to triage. The nurse asks a few questions, takes my vitals and tells her colleague she is taking me straight back to the emergency department. When I arrive, the nurse frantically searches for a room for me. A man on a gurney is being rolled out of room 24, which is located immediately to my left. The nurse grabs a housekeeper and asks, “Can you quickly clean this room?” The housekeeper says she goes on break in 5 minutes, just enough time for her to clean the room. The triage nurse runs to find a clean bed across the ED. Upon arriving back at my side, the nurse has me transfer to the bed. The housekeeper quickly cleans the tiny ED cubbyhole. The nurse then wheels me into the ED cubicle.
Things move very swiftly. I am given Ativan (a sedative) to calm down my breathing. I am given fentanyl for my pain. I am started on IV antibiotics. I am given a dose of versed (another sedative). Precedex (another sedative) is continuously dripped through my IV. After 30-40 minutes, my nurse tells me he is going to give me another dose of Ativan and fentanyl. I am completely exhausted from my doctor’s appointment and trip to the hospital; my brain cannot comprehend all the drugs which are being injected into the two IV lines (one in each arm).
I spend a whole night and the next day in the ED waiting for a respiratory intensive care unit (RICU) room. The night is muddled. I remember having to go to the bathroom. The nurse gives me the first round of Ativan. I clumsily make my way to the ED toilet down the hall. As time passes and IV fluids are given, I have to go to the restroom again. I am too drugged to move. A while later, I awake from a drowsy stupor. I lie in my bed in a pool of my own urine. I am too sedated to be humiliated. I managed to slur out to a random ED staff member that I had urinated in the bed. In a haze, the guy takes off my pants, undergarments and hospital gown and places on me a clean hospital robe. The man changes the disposable pad beneath me, but the urine has soaked through and soiled the sheets underneath. Not able to move or think, I collapse back down onto the wet linens.
Night and day drift in and out. I am so groggy. I am grateful to be getting sleep while spending nearly 24 hours in the ED. When I finally get a room and am transferred to the RICU, the drugs from the ED finally start wearing off. I am gripped with fear and anxiety. Where am I? What happened to last night and today? I want to scream and cry. I do not like losing control. I do not like being lost in time. I am usually so diligent—I meticulously regulate every drug which enters my body. But it seems, the one time I do not insist on managing the ED chaos around me, I am sedated into unconsciousness. I am grateful God watched over me and protected me. However, knowing this could happen again makes me want to never step across the threshold of any hospital ever again. Praise be to God for His mercy and compassion. May He continue to guard and guide me through every day of my life. It is only with Him that I pass safely from trial to trial.
Upon arriving at the emergency department (ED), I am gasping, wheezing and coughing. As soon as the triage nurse sees me, she immediately tells the ED receptionist she is taking me directly back to triage. The nurse asks a few questions, takes my vitals and tells her colleague she is taking me straight back to the emergency department. When I arrive, the nurse frantically searches for a room for me. A man on a gurney is being rolled out of room 24, which is located immediately to my left. The nurse grabs a housekeeper and asks, “Can you quickly clean this room?” The housekeeper says she goes on break in 5 minutes, just enough time for her to clean the room. The triage nurse runs to find a clean bed across the ED. Upon arriving back at my side, the nurse has me transfer to the bed. The housekeeper quickly cleans the tiny ED cubbyhole. The nurse then wheels me into the ED cubicle.
Things move very swiftly. I am given Ativan (a sedative) to calm down my breathing. I am given fentanyl for my pain. I am started on IV antibiotics. I am given a dose of versed (another sedative). Precedex (another sedative) is continuously dripped through my IV. After 30-40 minutes, my nurse tells me he is going to give me another dose of Ativan and fentanyl. I am completely exhausted from my doctor’s appointment and trip to the hospital; my brain cannot comprehend all the drugs which are being injected into the two IV lines (one in each arm).
I spend a whole night and the next day in the ED waiting for a respiratory intensive care unit (RICU) room. The night is muddled. I remember having to go to the bathroom. The nurse gives me the first round of Ativan. I clumsily make my way to the ED toilet down the hall. As time passes and IV fluids are given, I have to go to the restroom again. I am too drugged to move. A while later, I awake from a drowsy stupor. I lie in my bed in a pool of my own urine. I am too sedated to be humiliated. I managed to slur out to a random ED staff member that I had urinated in the bed. In a haze, the guy takes off my pants, undergarments and hospital gown and places on me a clean hospital robe. The man changes the disposable pad beneath me, but the urine has soaked through and soiled the sheets underneath. Not able to move or think, I collapse back down onto the wet linens.
Night and day drift in and out. I am so groggy. I am grateful to be getting sleep while spending nearly 24 hours in the ED. When I finally get a room and am transferred to the RICU, the drugs from the ED finally start wearing off. I am gripped with fear and anxiety. Where am I? What happened to last night and today? I want to scream and cry. I do not like losing control. I do not like being lost in time. I am usually so diligent—I meticulously regulate every drug which enters my body. But it seems, the one time I do not insist on managing the ED chaos around me, I am sedated into unconsciousness. I am grateful God watched over me and protected me. However, knowing this could happen again makes me want to never step across the threshold of any hospital ever again. Praise be to God for His mercy and compassion. May He continue to guard and guide me through every day of my life. It is only with Him that I pass safely from trial to trial.
Thursday, August 2, 2018
Don’t do this; don’t do that.
It is mid morning as I sit in my hospital bed. I am reading and studying the Bible when a respiratory therapist enters my room. It is the usual hospital protocol. Every one to three hours, a respiratory therapist checks in on me and records the numbers on my ventilator. Shift change occurred a few hours ago. This is my first encounter with this respiratory therapist.
As soon as the medical professional enters my room, he begins his lecture. “Be careful inflating and deflating your tracheostomy cuff. It is very fragile and can break easily. Don’t inflate and deflate your cuff so often. You are going to break the cuff. Then you will be in big trouble if the cuff breaks. What are you going to do if your cuff breaks? Don’t tug on your cuff cord. You are going to break it; it breaks very easily. Don’t deflate your cuff. The numbers on your ventilator drop very low indicating the ventilator is not giving you much breath support.” And his list of “don’t do this”, “don’t do that” continues on for the entire ten minutes he is in my room.
I am not in a fantastic mood. Anytime I am in the hospital, I am very irritable from sleep deprivation. Due to constant interruptions during the night, sleep is fleeting whilst hospitalized. I really want to set this respiratory therapist straight on many of his erroneous teachings. However, I keep my mouth shut. I do inform the therapist that if I keep my cuff inflated, I cannot speak. It is very hard to communicate when one cannot speak. Upon hearing this, the therapist seems to recognize this is true. I cannot answer his questions or give him guidance on operating my ventilator if I cannot speak. He then replies, “Well, keep your cuff closed as much as possible and only when absolutely necessary open it to speak.”
I am very grateful when the respiratory therapist leaves. My blood is boiling from this encounter. I pray to God to help me deal with this therapist. I thank God that despite my fleshy desire to go off on a tyrannical rant about my tracheostomy tube knowledge (as I have had a trach tube for over a year and deal with it every single day of my life!), I somehow refrained my lips from speaking prideful boasts. I prayed to God on how to handle this person. “Oh LORD, I just don’t think I can handle another encounter with this man.”
The therapist returned to my room two more times during his shift. Thankfully, on each return visit, there was a nurse or another hospital staff member in my room. The therapist, seeing I was busy interacting with someone else, simply slipped in and out of my room, saying only a few words. I was thankful and praising God when shift changed occurred. “Oh thank You LORD. The therapist is gone for the day!” I sent up prayer that the respiratory therapist would be educated on tracheostomy tubes and would refrain from needlessly chastening his patients.
The next morning, my heart broke and tears nearly burst forth from my eyes when the previous day’s respiratory therapist entered my room. “Oh, LORD! I cannot endure another needless scolding from this man. I do not think I have the strength to keep my lips sealed.” Oddly, when the therapist entered my room, he was kind and nice words flowed from his mouth. It was as if he was a completely different person. He did not scold me when I deflated my cuff to speak to him. He did not raise his voice during our interaction. I was dumbfounded and was left speechless.
When the therapist left, I thanked God for this man’s kindness and pleasant disposition. I thank God for allowing me to keep my mouth shut the day before. I thanked God for allowing me to see that it is better to keep one’s lips closed...”even a fool when he keeps his peace is counted wise, and he that shuts his mouth shut is esteemed a man of understanding” (Proverbs 17:28). I could have easily been a fool, but thankfully, God helped me keep quiet (and thus He helped me keep hidden my foolishness).
As soon as the medical professional enters my room, he begins his lecture. “Be careful inflating and deflating your tracheostomy cuff. It is very fragile and can break easily. Don’t inflate and deflate your cuff so often. You are going to break the cuff. Then you will be in big trouble if the cuff breaks. What are you going to do if your cuff breaks? Don’t tug on your cuff cord. You are going to break it; it breaks very easily. Don’t deflate your cuff. The numbers on your ventilator drop very low indicating the ventilator is not giving you much breath support.” And his list of “don’t do this”, “don’t do that” continues on for the entire ten minutes he is in my room.
I am not in a fantastic mood. Anytime I am in the hospital, I am very irritable from sleep deprivation. Due to constant interruptions during the night, sleep is fleeting whilst hospitalized. I really want to set this respiratory therapist straight on many of his erroneous teachings. However, I keep my mouth shut. I do inform the therapist that if I keep my cuff inflated, I cannot speak. It is very hard to communicate when one cannot speak. Upon hearing this, the therapist seems to recognize this is true. I cannot answer his questions or give him guidance on operating my ventilator if I cannot speak. He then replies, “Well, keep your cuff closed as much as possible and only when absolutely necessary open it to speak.”
I am very grateful when the respiratory therapist leaves. My blood is boiling from this encounter. I pray to God to help me deal with this therapist. I thank God that despite my fleshy desire to go off on a tyrannical rant about my tracheostomy tube knowledge (as I have had a trach tube for over a year and deal with it every single day of my life!), I somehow refrained my lips from speaking prideful boasts. I prayed to God on how to handle this person. “Oh LORD, I just don’t think I can handle another encounter with this man.”
The therapist returned to my room two more times during his shift. Thankfully, on each return visit, there was a nurse or another hospital staff member in my room. The therapist, seeing I was busy interacting with someone else, simply slipped in and out of my room, saying only a few words. I was thankful and praising God when shift changed occurred. “Oh thank You LORD. The therapist is gone for the day!” I sent up prayer that the respiratory therapist would be educated on tracheostomy tubes and would refrain from needlessly chastening his patients.
The next morning, my heart broke and tears nearly burst forth from my eyes when the previous day’s respiratory therapist entered my room. “Oh, LORD! I cannot endure another needless scolding from this man. I do not think I have the strength to keep my lips sealed.” Oddly, when the therapist entered my room, he was kind and nice words flowed from his mouth. It was as if he was a completely different person. He did not scold me when I deflated my cuff to speak to him. He did not raise his voice during our interaction. I was dumbfounded and was left speechless.
When the therapist left, I thanked God for this man’s kindness and pleasant disposition. I thank God for allowing me to keep my mouth shut the day before. I thanked God for allowing me to see that it is better to keep one’s lips closed...”even a fool when he keeps his peace is counted wise, and he that shuts his mouth shut is esteemed a man of understanding” (Proverbs 17:28). I could have easily been a fool, but thankfully, God helped me keep quiet (and thus He helped me keep hidden my foolishness).
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