Of late, I have felt like a hot potato, being tossed from one doctor to another, with no one actually helping any of my medical conditions. Recently, I have been having severe pancreatitis attacks, which occur almost daily. About once every 1-2 weeks, I have an attack which leaves me screaming in pain and unable to eat or drink for 24-48 hours. In my desperation, I have sought medical intervention in the world of gastroenterology.
After the first GI doctor insisted, despite seven years of medical records indicating I have chronic pancreatitis, I did not have chronic pancreatitis, I sought another GI doctor. The second GI doctor could not deny my previous medical records because he was my doctor six years ago when I needed some of my bile duct sphincters cut. Unfortunately, GI doctor number two seemed very ambivalent about being my doctor. In one breath he said he would be my doctor, but then he also seemed very happy and excited to refer me on to another GI doctor. I felt as though the more he understood my medical history (i.e., Mitochindrial Disease and some of my associated conditions), the more he seemed a bit timid and scared to treat me. GI doctor number two said he would give me a referral to one of his GI colleagues. If I did not hear back from GI doctor number three, I should call doctor number three’s office.
Let the waiting begin...
I told myself, I would not intervene with this referral. I feel like GI doctor number three is the wrong doctor for me as the physician does NOT treat the pancreas. But, I figured if this was the path for me, I would let God make everything happen. I waited and waited, but I never received a phone call. A week passed, nothing happened. I kept praying to God, “If this referral is to happen, let it happen. You know where I need to be. I am not going to force Your hand.”
Today, as I was sitting in bed and being in moderate pain from my pancreas, I started thinking about calling GI doctor number three. But, I did not want to force anything to happen. As I was pondering my decision to call the physician’s office, my mom walks into my room. One of the first things she said was, “Are you going to call for the GI referral and set up an appointment?” Since God seeemed to have laid this in my mom’s heart, I thought perhaps this was God’s will for me to call doctor number three. When my mom left my room, I immediately picked up the phone and called the physician’s office. To my disappointment, the appointment coordinator did not answer. I had to leave a voicemail. I prayed to God, “Well, LORD, if this appointment is supposed to happen, let me receive a phone call back from the doctor’s office.”
Several hours later, the phone rings. It’s the appointment coordinator. “Yes, I looked up your chart. We have not received a referral from your GI doctor. I can set up an appointment, but the doctor you are supposed to see will be out of the office for the next two months. The doctor does have a partner who can see you in about a month.” I agree to see doctor number three’s associate. Since the appointment is at the large medical facility 400 miles from my house, I ask if I can schedule an appointment at the same time I have my pulmonology appointment. “Yes, you are in luck. The doctor has availability at 10 a.m. on that day. In fact, that is her next available appointment.” I happily schedule the appointment.
After the phone call, I thank God for making both the GI and pulmonology appointments sync up. I then start wondering if I had just forced God’s hand. Two hours later I receive a phone call from GI doctor number two’s office. “Yes, I am working on faxing over your referral right now. They should call you shortly and be setting up an appointment. If they do not call you, here is their number.” I do not have the heart to tell the nurse I had just set up the appointment myself. I figured I would let her fax over the referral so GI doctor number three/four had the necessary information. When I hang up the phone, I start laughing. “Well, God, I guess this is confirmation I am supposed to be referred on to this other GI clinic. Please make this all work for good. Please help me get the necessary medical treatment and be free from this pancreatic pain, nausea and vomiting. Thank You for Your abundant blessings. Amen.”
Thursday, April 26, 2018
Tuesday, April 24, 2018
We’ll figure this out; I won’t abandon you
Many years ago when I was at university, one of my classes consisted of diagnosing patients using basic clinical skills and interviewing the patients. The “patients” were actors hired by the university to play the part of someone with diabetes, tuberculosis, or acid reflux, etc. The actors rotated through each small group. In a semester, each actor was exposed to around 500 students.
During my university studies, I became severely ill with pneumonia and other mysterious symptoms. I had to take about five months off before I returned back to university. During that time of being sick with an unknown medical condition, I had gone from doctor to doctor, clinic to clinic, searching for answers. Finally doctor number 86 recognized I probably had postural orthostastic tachycardia syndrome (POTS). He referred me on to a cardiologist (doctor number 87), and I was finally diagnosed with POTS. During all these medical encounters I became acutely aware of what made a good physician and what a terrible physician. I mentally collected all this information and brought it back with me to university.
One day during a patient interview, I was the person in our small group responsible for conducting the interview. The actress presented her medical case to me. In an instant, I completely forgot she was acting and that I was in class. My heart broke as I listened to this woman’s symptoms. I imagined all the pain and struggles she must have had to endure to get through each day. At the end of the interview, I placed my hand on her hand. I looked into her eyes, and I reassured the woman I would do everything I could to help her. If I was not able to figure out her case, I would enlist the help of my colleagues, and we would get answers. I assured the woman I would never abandon her. I reassured her that we would figure things out and get her back on the road to better health.
Suddenly, without warning, the woman burst into tears. The actress broke from her script. Between her sobs, she told me that this was the nicest, the kindest interview she has ever had. Although I was not a medical professional, she would gladly come to me as a patient because she knew I would do everything I could to help her. She said this was the first time she ever felt like someone listened to her and cared about her symptoms. Tears welled up in my eyes because this was exactly what I thought a good clinician should do—listen to their patients, care for them, never abandon them and do everything possible to help them. The actress and I hugged. She then moved on to another small group.
During my university studies, I became severely ill with pneumonia and other mysterious symptoms. I had to take about five months off before I returned back to university. During that time of being sick with an unknown medical condition, I had gone from doctor to doctor, clinic to clinic, searching for answers. Finally doctor number 86 recognized I probably had postural orthostastic tachycardia syndrome (POTS). He referred me on to a cardiologist (doctor number 87), and I was finally diagnosed with POTS. During all these medical encounters I became acutely aware of what made a good physician and what a terrible physician. I mentally collected all this information and brought it back with me to university.
One day during a patient interview, I was the person in our small group responsible for conducting the interview. The actress presented her medical case to me. In an instant, I completely forgot she was acting and that I was in class. My heart broke as I listened to this woman’s symptoms. I imagined all the pain and struggles she must have had to endure to get through each day. At the end of the interview, I placed my hand on her hand. I looked into her eyes, and I reassured the woman I would do everything I could to help her. If I was not able to figure out her case, I would enlist the help of my colleagues, and we would get answers. I assured the woman I would never abandon her. I reassured her that we would figure things out and get her back on the road to better health.
Suddenly, without warning, the woman burst into tears. The actress broke from her script. Between her sobs, she told me that this was the nicest, the kindest interview she has ever had. Although I was not a medical professional, she would gladly come to me as a patient because she knew I would do everything I could to help her. She said this was the first time she ever felt like someone listened to her and cared about her symptoms. Tears welled up in my eyes because this was exactly what I thought a good clinician should do—listen to their patients, care for them, never abandon them and do everything possible to help them. The actress and I hugged. She then moved on to another small group.
Wednesday, April 18, 2018
Grateful for the company...
As much as my health often confines me to the house, there are situations every once in a great while in which I am forced to leave my house. Recently, my former pastor and his wife were visiting my area. Oh, how I have missed them! Thankfully, their tight scheduled allowed them to travel within a short distance from my house. I eagerly sought the opportunity to meet with them.
From the moment of our reunion, it was as if no time had elapsed since I had last seen them. They have left the church scene and are now missionaries traveling the USA and the world! It was incredible hearing about their global experiences. Their frightful encounters in China, in which God provided a hedge of protection and allowed them to safely flee the country, left me awestruck and praising God for their deliverance. As I sat listening to story after story, I was extremely grateful for the companionship and change from my usual daily life. For just a short time, it was wonderful to forget about all my health issues and just bask in the golden glow of friendship. What a tremendous blessing their visit was. Now back to bed and my regularly scheduled life...
From the moment of our reunion, it was as if no time had elapsed since I had last seen them. They have left the church scene and are now missionaries traveling the USA and the world! It was incredible hearing about their global experiences. Their frightful encounters in China, in which God provided a hedge of protection and allowed them to safely flee the country, left me awestruck and praising God for their deliverance. As I sat listening to story after story, I was extremely grateful for the companionship and change from my usual daily life. For just a short time, it was wonderful to forget about all my health issues and just bask in the golden glow of friendship. What a tremendous blessing their visit was. Now back to bed and my regularly scheduled life...
Thursday, April 12, 2018
I can’t remember...but
When I am in the hospital, there are certain games I like to play, especially in teaching hospitals. In teaching hospitals, there are lots of doctors-in-training. There are first year residents (interns), residents and fellows. Sometimes, there will even be some medical students floating around. Usually the medical students and interns are too nervous to participate in my games. Fellows are usually too educated and know far more medicine than I do. So, the games I often play are with the residents.
What exactly are my games? Well, they usually involve testing the residents’ medical knowledge. I ask them to explain procedures (and ask probing questions as to what they mean if they use a medical term), or I ask them to explain how a drug works (including the various organ systems and chemical pathways used). Although these are just games, I also use them to assess the doctor’s knowledge. If the resident does not pass my test, I will insist they do not do any procedures on me.
Sometimes, though, funny incidences occur. During one hospitalization, I was extremely tired. I had arrived at 3 p.m. the day before for a medical appointment. I had pneumonia which had not cleared after several courses of antibiotics, and the physician sent me to the emergency department. I was admitted to the hospital, but I had to wait until 4 a.m. before a bed was available. Needless to say, I did not get any sleep that night. When two residents showed up in my room to do a brief patient history, they asked me about the drugs I had previously taken for pneumonia. Normally, I am on my game and can rattle off the name of many pharmaceuticals, but this morning, my brain was not in top shape. I started to say, “I can’t remember their names...” Immediately, one resident cut me off and interjected, “But can you at least remember what the drug names might have sounded like.” I continued my train of thought, “But they were third generation cephalosporins.” (This was the class of drug which all my previous antibiotics had been.) Of course, both residents instantly stopped what they were doing and stood in stunned silence with their mouths hanging open. After a few moments, one resident cleared his throat and said, “That’s all we need to know. Knowing your drugs were third generation cephalosporins is more than enough information to help us with your case.” The two residents quickly fled my room. As they left, I could hear them whispering, “How did that patient know her drugs were third generation cephalosporins?” The two residents seemed scared and never came back to my room by themselves; they never asked me any more questions.
It is experiences like this which make staying in the hospital more exciting. It’s always fun to keep doctors-in-training on their toes.
What exactly are my games? Well, they usually involve testing the residents’ medical knowledge. I ask them to explain procedures (and ask probing questions as to what they mean if they use a medical term), or I ask them to explain how a drug works (including the various organ systems and chemical pathways used). Although these are just games, I also use them to assess the doctor’s knowledge. If the resident does not pass my test, I will insist they do not do any procedures on me.
Sometimes, though, funny incidences occur. During one hospitalization, I was extremely tired. I had arrived at 3 p.m. the day before for a medical appointment. I had pneumonia which had not cleared after several courses of antibiotics, and the physician sent me to the emergency department. I was admitted to the hospital, but I had to wait until 4 a.m. before a bed was available. Needless to say, I did not get any sleep that night. When two residents showed up in my room to do a brief patient history, they asked me about the drugs I had previously taken for pneumonia. Normally, I am on my game and can rattle off the name of many pharmaceuticals, but this morning, my brain was not in top shape. I started to say, “I can’t remember their names...” Immediately, one resident cut me off and interjected, “But can you at least remember what the drug names might have sounded like.” I continued my train of thought, “But they were third generation cephalosporins.” (This was the class of drug which all my previous antibiotics had been.) Of course, both residents instantly stopped what they were doing and stood in stunned silence with their mouths hanging open. After a few moments, one resident cleared his throat and said, “That’s all we need to know. Knowing your drugs were third generation cephalosporins is more than enough information to help us with your case.” The two residents quickly fled my room. As they left, I could hear them whispering, “How did that patient know her drugs were third generation cephalosporins?” The two residents seemed scared and never came back to my room by themselves; they never asked me any more questions.
It is experiences like this which make staying in the hospital more exciting. It’s always fun to keep doctors-in-training on their toes.
Tuesday, April 10, 2018
You must be on the road to recovery
Since getting a trach tube and starting invasive ventilation nearly a year ago, people suddenly assume I am now on the road to recovery. It is odd how people conclude because I no longer have a mask strapped to my face to breathe using a BiPAP machine but have a tube surgically place in my neck connected to a ventilator that this signifies me feeling better. Actually, needing the use of invasive ventilation is a sign that my health is deteriorating. I no longer have the muscle strength to breathe on my own. I have become reliant on a machine, which is life support, to sustain my daily breathing needs.
When people believe that I am “all better”, I politely smile and thank the person for their remark. As much as I desperately want to give the person a quick lesson about what it means when a person needs to use invasive ventilation, I bite my lip and refrain from saying anything. Who am I to dash their hopes about my health?
It’s hard for most people to understand what it means to be chronically ill. It’s hard to understand what it means to have a progressive disease. When most people get sick, they recover after a few days or a few weeks. Who could ever imagine being constantly sick for over nine years and having a disease which continues to cause more and more complications? For most people, it is unfathomable. For me, it’s my daily life.
When people believe that I am “all better”, I politely smile and thank the person for their remark. As much as I desperately want to give the person a quick lesson about what it means when a person needs to use invasive ventilation, I bite my lip and refrain from saying anything. Who am I to dash their hopes about my health?
It’s hard for most people to understand what it means to be chronically ill. It’s hard to understand what it means to have a progressive disease. When most people get sick, they recover after a few days or a few weeks. Who could ever imagine being constantly sick for over nine years and having a disease which continues to cause more and more complications? For most people, it is unfathomable. For me, it’s my daily life.
Thursday, April 5, 2018
Always the same dream
As my mind drifts deeper and deeper into sleep, it seems I always have the same dream. I am in some large restaurant in which there is a HUGE buffet. There are multiple lines for many different types of food. There are endless varieties of pasta dishes; beef, steak, chicken, various other meat dishes, mashed potatoes and lots of gravy line another wall of the buffet; salad and all the fixings cover another buffet table. A bakery filled with all sorts of breads, cakes, pies and other sweet treats is situated in the middle of the room. As the buffet continues, there is an endless assortment of vegetable dishes followed by lots of different types of fruits. Sprinkled throughout the buffet are drink stations with all sorts of different soft drinks, lemonades and iced teas. It seems the buffet continues for a very long time with a vast assortment of food. The restaurant is packed. It is hard to move any where because there are so many people, and children are running everywhere.
As I gaze upon all the delicious food, my stomach growls. I am so hungry. I find the beginning of the buffet line. I patiently wait at the back of the line. The line moves so slowly. Parents are helping their kids fill their plates with food. The children are indecisive as to what they want on their plate. The adults take what seems like a lifetime to move down the buffet.
As I finally approach the food, people cut in front of me in line. Then, by the time I get to the food I really want to eat, the pans are empty. I am so hungry. I just want to grab a couple items and go back to my table and eat...but it seems I am only able to scrounge up a few morsels of food. Reluctantly, I leave the buffet line and fight my way through the mobs of people to get back to my table. I enjoy a few bites of food, and then I have to leave.
Lately, this dream has played out over and over again in my sleep. I know my body is very hungry. I am trying my best to eat, but after taking a few bites of food, I start feeling quite sick. It does not matter how much food surrounds me, I simply become too ill from eating. It is frustrating. I know my body needs food, but I am not able to overcome the pain and nausea I experience from chronic pancreatitis to properly eat. The dream continues...
As I gaze upon all the delicious food, my stomach growls. I am so hungry. I find the beginning of the buffet line. I patiently wait at the back of the line. The line moves so slowly. Parents are helping their kids fill their plates with food. The children are indecisive as to what they want on their plate. The adults take what seems like a lifetime to move down the buffet.
As I finally approach the food, people cut in front of me in line. Then, by the time I get to the food I really want to eat, the pans are empty. I am so hungry. I just want to grab a couple items and go back to my table and eat...but it seems I am only able to scrounge up a few morsels of food. Reluctantly, I leave the buffet line and fight my way through the mobs of people to get back to my table. I enjoy a few bites of food, and then I have to leave.
Lately, this dream has played out over and over again in my sleep. I know my body is very hungry. I am trying my best to eat, but after taking a few bites of food, I start feeling quite sick. It does not matter how much food surrounds me, I simply become too ill from eating. It is frustrating. I know my body needs food, but I am not able to overcome the pain and nausea I experience from chronic pancreatitis to properly eat. The dream continues...
Tuesday, April 3, 2018
A year of obedience
After my mom's car accident, I made a promise to God. "LORD, for the next year, I will be Your obedient servant. I will take care of my mom and drive her any place she needs to go. I will not whine or complain. As much as this Mitochondrial Disease challenges me, I know the obstacles my mom is facing are far greater. I have no excuse to grumble."
During the next year, my mom had endless appointments. My mom could not drive. So, whenever she had an appointment, I was her chauffeur. Often her appointments were 30-40 minutes away from our home. I mustered up all my energy to make the drive. During her appointments, I would sit in the car and take a nap. When we arrived home, I would dutifully go to the kitchen and prepare supper for my mom and dad. (My mom would be completely exhausted from her appointment and would quickly fall asleep...and my dad has very limited cooking skills. He can cook a frozen pizza in the oven and burn grilled cheese sandwiches on the stove. So, if food was to be prepared, I was the one who had to do it.)
As the weeks and months rolled by, my level of fatigue grew worse and worse. By 7 o'clock in the evening, I was in bed. When morning came, I fought with all my might to get out of bed. I would go to the kitchen and make a strong brew of tea to help get my body moving. Each day, I made an assessment of my mom's health progress. I would mentally note every small success. "Today, my mom sat for five minutes at the dining room table before she had to go back to bed. Today, my mom walked for a minute without needing to take a break." Each small task she could complete was a giant victory in my book. The more she healed, the sooner I knew my services would no longer be necessary.
By the seventh month of my promise, I began to doubt I could keep my vow to God. My body was so taxed of energy, it could no longer digest food. Thankfully, my mom's one doctor's appointment was located a few blocks from a food cooperative. During my mom's appointments, I would sneak off to the tiny store and commandeer a half gallon of organic whole milk. I would briskly shake the glass bottle, mixing the cream layer with the rest of the milk. I then had about ten minutes to chug the half gallon of milk before I needed to pick my mom back up. The ice cold dairy delight was magic to my body--it gave me an incredible boost of energy. I then had enough strength to drive my mom and me back home.
As month nine came to pass, my body was constantly shaking with fatigue. As my mom gained stamina, she wanted to do more and more tasks. Normally, I would have been very against her exerting herself and possibly injuring herself, but at the moment, I was completely out of energy. Anything she could do meant I could save my energy for other undertakings. I did not hinder her enthusiasm.
Right around month ten, my mom had recovered enough and had gained the courage to attempt to drive. In my normal state, I would have insisted to continue driving her. But in my energy deprived state, I was her biggest cheerleader. I would even encourage her to drive and attempt farther distances. Very quickly, she gained the confidence to drive short distances.
Before the completion of one full year, my parents decided to go visit family and friends in warmer climates. (My mom noticed she did much better in warmer weather, and with her physician's support, my mom happily went on an extended vacation.) By this time, my fatigue was so intense, I constantly had tears in my eyes. I was never sure if I might just collapse from sheer exhaustion. When my parents left on their extended holiday, I went to bed and stayed there for four months. I did little more than crawl to the bathroom and back to my bed. Every fiber of my body quivered with extreme tiredness. I praised and thanked God my parents went out of town, and I was allowed to rest unhindered for a very long time. Although I did not technically assist my mom for one full year, I know God arranged everything to give me a much needed rest.
When the one full year of obedience came to pass, I thanked God for the opportunity to grow in my obedience. I thanked God for the opportunity to quell my tongue. Before my mom's accident, I would talk haphazardly, never thinking about what flowed out of my mouth. Now, I am much more guarded in my speech and try not to make a fuss about my health. Although many years have passed, my mom continues having health challenges from her automobile accident injuries. As frustrated as some situation leave her, I try to rally behind her, encourage her and remind her how far she has come. Even if I can no longer physically help her, I try my best to cheer her on.
(Link to my mom’s car accident blog post, click here)
During the next year, my mom had endless appointments. My mom could not drive. So, whenever she had an appointment, I was her chauffeur. Often her appointments were 30-40 minutes away from our home. I mustered up all my energy to make the drive. During her appointments, I would sit in the car and take a nap. When we arrived home, I would dutifully go to the kitchen and prepare supper for my mom and dad. (My mom would be completely exhausted from her appointment and would quickly fall asleep...and my dad has very limited cooking skills. He can cook a frozen pizza in the oven and burn grilled cheese sandwiches on the stove. So, if food was to be prepared, I was the one who had to do it.)
As the weeks and months rolled by, my level of fatigue grew worse and worse. By 7 o'clock in the evening, I was in bed. When morning came, I fought with all my might to get out of bed. I would go to the kitchen and make a strong brew of tea to help get my body moving. Each day, I made an assessment of my mom's health progress. I would mentally note every small success. "Today, my mom sat for five minutes at the dining room table before she had to go back to bed. Today, my mom walked for a minute without needing to take a break." Each small task she could complete was a giant victory in my book. The more she healed, the sooner I knew my services would no longer be necessary.
By the seventh month of my promise, I began to doubt I could keep my vow to God. My body was so taxed of energy, it could no longer digest food. Thankfully, my mom's one doctor's appointment was located a few blocks from a food cooperative. During my mom's appointments, I would sneak off to the tiny store and commandeer a half gallon of organic whole milk. I would briskly shake the glass bottle, mixing the cream layer with the rest of the milk. I then had about ten minutes to chug the half gallon of milk before I needed to pick my mom back up. The ice cold dairy delight was magic to my body--it gave me an incredible boost of energy. I then had enough strength to drive my mom and me back home.
As month nine came to pass, my body was constantly shaking with fatigue. As my mom gained stamina, she wanted to do more and more tasks. Normally, I would have been very against her exerting herself and possibly injuring herself, but at the moment, I was completely out of energy. Anything she could do meant I could save my energy for other undertakings. I did not hinder her enthusiasm.
Right around month ten, my mom had recovered enough and had gained the courage to attempt to drive. In my normal state, I would have insisted to continue driving her. But in my energy deprived state, I was her biggest cheerleader. I would even encourage her to drive and attempt farther distances. Very quickly, she gained the confidence to drive short distances.
Before the completion of one full year, my parents decided to go visit family and friends in warmer climates. (My mom noticed she did much better in warmer weather, and with her physician's support, my mom happily went on an extended vacation.) By this time, my fatigue was so intense, I constantly had tears in my eyes. I was never sure if I might just collapse from sheer exhaustion. When my parents left on their extended holiday, I went to bed and stayed there for four months. I did little more than crawl to the bathroom and back to my bed. Every fiber of my body quivered with extreme tiredness. I praised and thanked God my parents went out of town, and I was allowed to rest unhindered for a very long time. Although I did not technically assist my mom for one full year, I know God arranged everything to give me a much needed rest.
When the one full year of obedience came to pass, I thanked God for the opportunity to grow in my obedience. I thanked God for the opportunity to quell my tongue. Before my mom's accident, I would talk haphazardly, never thinking about what flowed out of my mouth. Now, I am much more guarded in my speech and try not to make a fuss about my health. Although many years have passed, my mom continues having health challenges from her automobile accident injuries. As frustrated as some situation leave her, I try to rally behind her, encourage her and remind her how far she has come. Even if I can no longer physically help her, I try my best to cheer her on.
(Link to my mom’s car accident blog post, click here)
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