When I arrive in the ICU, another intense round of apprehension and nervousness seizes my heart. I want to run; I want to hide; I want to cry. The thought of living through one more moment in another ICU is almost more than I can bear. I wrap my arms around my knees and pray God will direct the right doctor into my life. When I arrive at my room, it is crazy chaos. There are lots of people milling around my room. I am quickly transferred into my bed. A frantic frenzy of faces zooms around me, hooking me up to monitors and setting up my ventilator.
As trepidation and dread intensify inside me, I see a sight which leaves me nearly bursting with laughter. There is an attending doctor giving commands to a bunch of eager doctors-in-training. The scene reminds me of a mother hen directing her young chickadees. The hen gives an order, and the chickadees scramble around in a topsy-turvy muddled mass, almost running into each other and tripping over each other, trying to obey the edict. I allow the laughter to wash away my fears. As I watch the young flock whirl around me, I notice the physician leading the crew is smart and a great teacher. I suddenly find myself wishing I was one of those chickadees instead of the patient stuck in bed. Oh how fun it must be to be a chickadee! Oh, what knowledge could be gleaned from such an incredible instructor!
All too soon, it is lunch time. It is as if an invisible bell sounds; the ICU and my room immediately clear out of medical personnel. Suddenly, I am all alone.
I gaze about my tiny ICU rectangle, which is just large enough for my bed and for a chair at the foot of my bed. I look out the glass sliding doors to my left which overlooks a nurses' station. The faces are all unfamiliar. The landscape is foreign. I long for something, anything which might give me comfort. I gaze out the windows to my right which gives a beautiful view of a park. The lush green grass and trees want to give me hope, but I am too upset. This park, too, is a foreign place to me. For many, many months, I have not ventured outside my local area. Now, I am in a place where the accents are unfamiliar, the climate is different and every single person is a stranger. I am overwhelmed with loneliness. I pull my knees up to my chest, put my arms down on top of my knees and bury my head in my arms. The tears which have been fighting all morning to escape my eyelids quickly come cascading down my cheeks. I again pray to God, "Please send an amazing physician my way. Please let this all be over soon."
In the morning, a nicely dressed medical professional enters my room. She begins the conversation, "Hello. I don't know if you remember me or not from yesterday, but I am Doctor..." (Instantly my brain screams, "WHAT!? She is asking if I remember her!? She is not assuming I remember her!? She is re-introducing herself to me!? This is incredible! No one ever does this! Doctors always presume you remember them. Doctors are offended if you do not remember them. Wow, this doctor is not proud or arrogant. I think I am going to like her!” Although I do not immediately recognize the physician, I quickly think back to the day before. I frantically scan through the faces in my mind. Suddenly the image of mama hen and the chickadees pops into my brain. "Ah, yes, this is the attending doctor (aka, mother hen)." I bite my lip as the memory of the chickadees hopping around the ICU threatens to cause laughter to erupt from my throat.)
As the encounter proceeds, I am overjoyed. The physician knows more about trachs than I do! Although I have had a trach for only three months, it seems my tiny knowledge about trachs has exceeded all my previous doctors' expertise about trachs. I suddenly feel a huge burden lifted off my shoulders. I am beginning to relax a bit. I am starting to trust this medical professional. I see through her words and actions that she is very kind and caring. My fright and foreboding about being in a hospital are slowly ebbing away. Things go exceptionally well for the rest of the hospitalization. I am constantly praising God for this doctor. I am continually praising God for answering all my prayers. What an incredible blessing this physician is!
When I am getting ready to be discharged, the pulmonologist gives me her card with her contact information on it. I am a bit startled by this gesture. No one EVER volunteers to be my doctor. I am always assigned clinicians, who after a visit or two tell me I am too convoluted of a medical case, and I should seek care elsewhere. No one ever WANTS to be my doctor. Does this physician know what she is getting into? Does she grasp the dizzying array of symptoms and complications associated with Mitochondrial Disease? Does she understand that I am a thorn in most doctors' sides because nothing ever goes as it should? Does she realize that since 2009, she is doctor number 387? And what has happened to the other 386 physicians? For the most part I have been abandoned by them because my case is too torturous. Well, she is an answer to many prayers. Perhaps God has equipped her to handle my medical case. Either way, I eagerly snatch up her card and carefully store it away for future reference.
As the months have rolled by, I am still again and again amazed that this physician continues to be my pulmonologist. (I often think to myself, "What I have done to deserve such an amazing doctor!") At each medical appointment, I relish in the doctor's kindness and compassion, but I also feel like I am holding my breath. The longest I have ever had a doctor has been 15 months. Most of the time when I find a physician I really like, something causes the relationship to abruptly end--the doctor moves across the country to another medical facility, the doctor stops seeing patients to teach or do medical research, or the doctor simply tells me I am too complex and am beyond his/her level of care. So, I feel as though I never know if this might be the last time I will see my pulmonologist...and that makes me very sad. But whatever the future may bring, I am filled with much gratitude to have such an incredible person on my medical team! Praise be to God!
(Epilogue: The medical events which transpired this past summer have greatly challenged me in almost every aspect of my life. I have been very angry and bitter that so many bad things have happened to me. But as I have been reflecting on many areas of my life recently, God has shown me that He uses all things for good. Without all those terrifying experiences, I would have never sought medical treatment at the large medical center 400 miles away; I would have never been lead to my current pulmonologist. As much as these incidences have deeply scarred me, God has allowed me to see His goodness, His mercies and His miracles over and over again. It seems only when we are in the darkest places can we truly see God's light.)
"For it is He who delivers you from the snare of the trapper and from the deadly pestilence. He will cover you with His pinions, and under His wings you may seek refuge; His faithfulness is a shield and a bulwark. You will not be afraid of the terror by night, or of the arrow that flies by day; of the pestilence that stalks in the darkness, or of the destruction that lays waste at noon. A thousand may fall at your side, and ten thousand at your right hand, but it shall not approach you. No evil will befall you, nor any plague come near your tent. For He will give His angels charge concerning you, to guard you in all your ways." (Psalm 91:3-7, 10-11)
(Link to Part One click here)
(Link to Part Two click here)
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