With each new endeavor comes a new health challenge

On August 1, 2016, I decided I should start writing a blog. My health was stable. My life was rather boring. Very shortly after starting the new project, I suddenly had difficulty breathing. During the next several months, I retreated to my bed because I was constantly short of breath. I struggled to keep posting to my blog because I was extremely exhausted.

In late November 2016, I decided I should organize a Bible study. I submitted my request to host the event at our local community center. I waited and waited for the person to contact me with the event's approval. On December 6, 2016, I was rushed to the hospital because I could not breathe. I was started on non-invasive ventilation. The next day, I received a phone call the Bible study had been approved. I now felt like I was underwater. How am I going to go to Bible study now that I am having severe issues breathing? I double-downed and tried not to think about it.

Somehow in the weeks and months to come, God gave me to the energy to keep on going to Bible study. When I got my tracheostomy and ventilator in May 2017, I was sure these new medical devices would scare people away. Instead, I found tremendous support, and the Bible study grew.

This spring, boredom crept into my life. Bible study was cancelled indefinitely. I had extra time in my day. After my mom kept pestering me to start a YouTube channel, I finally made the leap and filmed my first video. I could have never imagined less than three months into the endeavor, my health would take a nose-dive. I now was really scrambling. Bible study had resumed; I had to create a new YouTube video once a week; I needed to keep posting to my blog. I was juggling doctors' appointments, trips to the emergency department and hospitalizations. I was lamenting my decision to start so many endeavors.

The one good thing about it all is I need all these outlets to survive. This blog helps me see God in my life. When writing about events, I suddenly realize how much God was leading and directing my path. Bible study provides a wonderful emotional support group. I rely heavily on the attendees for their love of God and their ability to help lift me up. And YouTube keeps me going. I am constantly thinking about content for my next video. Often I have roadblocks, but then a situation will arise with my ventilator or health, and that will lead to creating a great YouTube video. Moreover, I have been in contact with people from all around the globe, which inspires me to keep on keeping on.

If you think I am up for another endeavor, I am sorry to disappoint you. I am extremely tired and am barely getting through my days. I have enough on my plate and enough health challenges to last me a lifetime. I am very thankful and very grateful God has allowed me so many opportunities to connect with the world around me. It has changed my life.

A new pulmonologist; a new hope for antibiotics

This summer, I had an overly zealous resident doctor who wanted to solve all my medical challenges. She referred me to four different doctors, one of which was a pulmonologist. I was not in need of a pulmonologist. My lungs were doing ok. I did not want to keep the appointment.

The day before the appointment, I asked if I could do a telemedicine appointment. The answer was yes. I was given the telemed information. I tried to download the app, but it was ONLY for smartphones. I could not complete the telemed appointment because the app would not work on my devices. I re-scheduled for an in-person appointment a few weeks later.

The day before my second appointment, I again asked to have a telemedicine appointment. This time, I was able to use my mom's smartphone. I downloaded the app. I waited and waited for the appointment. It never happened. The day after the appointment, the clinic calls me to tell me my appointment (from the day before) was cancelled because the doctor had an emergency. The appointment was re-scheduled again.

A few days before the third appointment, I was starting to cough up thick, yellow sputum. My airways were heavy and congested. I laughed because now I actually needed to see a doctor. When my telemedicine appointment started, I was shocked the doctor knew about tracheostomies. He said I sounded bad. (My raspy voice and coughing were noticeable via the video conference.) He said he was going to prescribe antibiotics. He then wanted a sputum sample to see if I needed IV antibiotics.

I was stunned the doctor was being very straight forward and wanted to treat my symptoms. For nearly three years, I have been sick with respiratory infections. I would beg for IV antibiotics, but they would usually not be prescribed. I would become very sick and end up in the hospital. Now, this doctor is trying to treat me and prevent me from being hospitalized. I am overwhelmed with joy. He also wanted to have another appointment the following week to see how my symptoms were. My previous pulmonologist rarely followed up. My appointment were usually 10-16 weeks apart. If I needed anything sooner than that, I was forced to go to the emergency department.

After fighting for so long to get medical care, I have basically given up. I wait until I get really sick, go to the emergency department and hope I am given antibiotics which are effective against the bacteria in my lungs. I am usually given strong, potent antibiotics in the emergency department, but then I am discharged home on oral antibiotics which do not work against the bacteria. The infection never clears. I never get rid of the bacteria. In the weeks to months ahead, the infection comes back. I again go back to the hospital to start the process all over again. But perhaps, this endless cycle may now be coming to an end. My heart overflows with gratitude to God for this amazing doctor.

The year 5780 in review

Saturday began a new year on God’s calendar. It is now the year 5781. As I reflect back to last year, I am in a state of awe and wonder that I made it through the year.

I was extremely sick last fall. I had a deadly bacteria, but my infectious disease doctor did not take the sputum culture results seriously. The bacteria spread to my brain and caused meningitis. I was hospitalized for about a week. I was discharged home, but when the antibiotics ran out, I was still sick.

I struggled for the next two months, trying to hop-scotch together antibiotics from emergency department visits and urgent care clinics. Cultures taken from lungs revealed I had six bacteria now inhabiting my respiratory tract.

In January, my infectious disease doctor decided I should get a port-a-cath. That was a complete disaster. The catheter blocked blood flow and prevented the blood from the left side of my body from returning back to my heart. I have never been in so much pain in all my life! The pain and pressure in my head and neck left my shaking uncontrollably in pain. Finally, after over 40 days of having this nightmare implanted in my body, I was able to get it removed.

I was sick before the procedure to have the port-a-cath device removed. I was extremely sick afterward. I was in and out of the hospital. I lost my beloved pulmonologist and infectious disease doctors when they decided I was just making up all my symptoms.

By the grace of God, I was directed to go to another hospital. The bacteria in my lungs had eaten two holes in my lungs. I had diffuse infection in my lower lobes of lungs. I was hospitalized and given IV antibiotics.

After my hospitalization, I was able to see a new pulmonologist. At my third appointment, he diagnosed me with COVID-19. I was extremely sick. I was having issues with my kidneys. I would cough non-stop for an hour at a time. I was prescribed azithromycin and hydroxychloroquine. Praise God, this medicine pulled me out of a bad health crisis.

In April I started a YouTube channel. In June, I began having significant chest pain and shortness of breath. In July, I started having blood clots, one of which was a massive and traveled to my lungs. By God’s grace, I again pulled through. I have been in and out of the hospital since July with pneumonia, blood clots and having my pancreas investigated.

It has been one incredible roller coaster ride. I am thankful and grateful God decided to pull me through so many health crises. May the year 5781 be full of happiness, joy and health; may it be sweet like apples and honey! Shanah Tovah! (Happy New Year!)

A dead bat, dead bugs and now I'm in bed

This afternoon, my father was in a foul bad. Miscommunication arose when my father told my mother about a man coming to look at our water system. There are items in front of the water system. They needed to be moved. My mom thought my dad was going to move them. My dad thought my mom was going to move them. At the end of it all, there was loud shouting and dissatisfaction felt between both parties.

I do not like conflict. I do not like people arguing. I will go out of my way to resolve a bad situation. There was a heap of light items which needed to be organized and grouped together in front of the water system. A few items could be thrown in the trash, and some items just needed to find a new home in the attic. With the exception of moving the items to the attic, I knew I could quickly group the items together and put them in a more organized heap away from the water system.

I headed out to the garage. I immediately got to work throwing some empty plastic water bottles into the recycling bin. I grouped together some small empty pots. There was some light-weight netting which I crumpled up into a ball and put in a plastic bag. My dad joined me and helped with the quick project. I asked him to put some of the items on a shelf.

As items were moved, I looked with great shock at a large lifeless butterfly with fang teeth and a fury body. Immediately I told my dad to stand back and get a broom. I told my dad there was a dead bat on the ground! I then told my dad not to touch the critter and to use only a long handled broom to sweep the dead thing directly into the trash bin. My dad did as I told him, and soon the area was free and clear of both the bat and some dirt.

And just like that, the area in front of the water system was cleared away. The area could have been sorted, organized and cleaned up more, but I was exhausted. A few minutes of moving around is all this girl can tolerate. As soon as I started moving, chest pain nearly sent me crashing to the ground and continued to plague me every time I moved.

I retreated to the house. I went to the fridge to get an apple before going to bed. As I looked on the window sill, there were hundreds of ants streaming into the room from a tiny crack in the window sill. Their final destination was a plastic planter with some newly sprouted plants. I was horrified. I was concerned about the little seedlings. I lifted up one seedling pod and underneath there was a nest of ants!!! I quickly washed off the seedling and moved the pod to an empty plastic container. I then washed off and moved the other seedlings. The planter was full of ants and larvae! I rinsed out the planter outside. Hundreds of ants met their demise.

I came back inside and went to bed for the rest of the day. That is more excitement than I care to have. My poor heart is tired and screaming in pain, but at least the conflict has been resolved. My mom made supper. My dad ate it. Now they seem to be at peace again...and if they are at peace so am I. Good night and Happy New Year!

"If it is possible, as far as it depends on you, live at peace with everyone." (Romans 12:18)

 

Susan Douglass: A Mito Icon. Now at rest

This week has been set on my calendar for several months. I have been carefully planning my time in preparation to make a video about Mitochondrial Disease in celebration of Mitochondrial Disease Awareness Week (Sept 13-19).

When I logged in to Facebook to post my video to a few Mito Facebook groups, there on my newsfeed was an announcement that my dear friend Susan Douglass passed away. I cannot tell you how much my heart broke when reading the post.

Susan was one of the first people I met when I got my diagnosis of Mitochondrial Disease. She was a wealth of information. She was always so caring and provided a lot of comfort. Susan was a woman of faith and inspired others through her love of God.

For many years, Susan fought bravely. She never let her illness get in the way of helping others. She took a lot of time answering people's questions and providing wonderful insight and information. With Susan's passing, a large hole in the Mito community is left behind.

It is rather bittersweet that as we celebrate a week to raise awareness about Mitochondrial Disease, one of the biggest icons with the medical condition has passed. I feel really bad that my Mitochondrial Disease Awareness video was already uploaded to YouTube. I would have loved to have honored my dear friend at the end of the film.

Unfortunately, this is Mitochondrial Disease, and this is the reality of the disease. Every year, an untold number of people succumb to the medical malady. There is no cure for the disease. We cling to each other and lift each other up. Our hope is always the same that some day, some day soon, there will be no more deaths from Mitochondrial Disease.

To my dear friend Susan, thank you for all your hard work. You have greatly influenced the Mito community. May your body now be free from pain. You fought hard; now rest easy.

A video 9 years in the making

Nine years ago, I was introduced to a condition called Mitochondrial Disease. The first thing I did was search YouTube for information. At that time, there were very few videos about the illness. I desperately wished I had the medical knowledge and the technology smarts to create my own video. The challenge was set.

As the weeks, months and years passed, videos were made to celebrate Mitochondrial Disease Awareness Week. Sometimes the videos were no more than photos of people who had Mitochondrial Disease. Others had basic information, but there seemed always to be errors in the videos. I told myself if only I could create a video, I would make one which included not only photos of those with Mitochondrial Disease, but it would give information about the disease and highlight what life is like for a person with Mito.

After creating my YouTube channel in April, I knew the video I most wanted to make was a film for Mitochondrial Disease Awareness Week. As the weeks rolled by, I was constantly writing and re-writing the script in my head. I then sought photos from those who had Mito to include in the video. After endless hours editing photos and creating slides for the video, finally everything was done. I just had to record the audio voice over as I filmed the slideshow on my computer. It was one last major task before the video was complete.

In the weeks leading up to the final filming of the video, I had been extremely sick. I kept begging God to let me live to create this video. I had put in so much effort and energy; I needed to finish the project. Thankfully, God heard my pleas and allowed me to keep on keeping on. When recording the final product, I was feeling very poorly--my chest hurt, I was short of breath and I had absolutely no energy. But through the magic of editing, the media creation was finished. I uploaded the video to YouTube and set the release date of the video to be on the first day of Mitochondrial Disease Awareness Week (Sunday, September 13). I praised God this endeavor of nine years was complete.

I hope and pray my Mitochondrial Disease Awareness video is able to help those struggling with the disease find community. I also desire the film to help the world understand one more medical condition...a medical condition which affects thousands of people every year and sadly kills so many precious lives.

At the end of the video, I dedicate the film to my two dear friends who passed away from Mitochondrial Disease. Although I wish neither one of them was afflicted by this miserable health malady, I am forever grateful for their friendship and for God allowing our paths to cross. May there soon be a cure for Mitochondrial Disease.

The Cycle of Symptoms

I have been very sick since June. I have been having fierce chest pain which is exacerbated with exercise. Doing the slightest amount of exertion causes me to be gasping for breath, and I clutch my chest in severe pain. I become very dizzy, light-headed, nauseous and feel as though I am going to pass out. Sometimes, the symptoms are too much, and I collapse to the ground.

There is always a constant chest pain, which often prevents me from sleeping and will wake me up from sleep. I am concerned because my blood pressure is elevated at rest. Usually my blood pressure is 90/60. Since July, it has been 135/85. I have also noticed my heart rate is faster than normal whenever I leave my bed. Additionally, it feels as though there is a knife in my back. It began in February and has progressively gotten worse. I have started sleeping on my stomach in a vain attempt to alleviate the back pain.

As the day progresses, my body retains water. In the evening, I notice my ankles are swollen. My abdomen nearly doubles in diameter. My face swells, and I look as though I took a punch to the face when my right eye becomes puffy.

The chest pain builds up more and more each day and then BAM! I have an attack in which I feel as though my heart is being strangled. My heart races. My blood pressure soars. Although I am on a ventilator, I fight to breathe. The pain is horrific. My heart rate is irregular and bounces between 80 and 145 beats per minute. I feel as though I am going to die.

After fighting through all the symptoms, like magic, the tremendous pressure on my chest instantly lessens. My body stops struggling to breathe. My heart rate decreases. My blood pressure drops. My chest remains painful and achy, but I no longer have the horrible sensation as if my heart is being squeezed to death. My breathing remains slightly more rapid than normal, but I am not gasping for air.

The day after the attacks, I cough up blood. Two days after these awful attacks, I develop severe pain in my calf. I cannot walk on the leg without it exploding in pain. When I elevate the leg, the pain decreases. As soon I try to put weight on the leg, the pain comes roaring back. The leg symptoms last for the next 2 to 72 hours. Then, the pain will instantly disappear. I will feel a release in my leg and associated with it, it will feel as though lightning shoots up from my calf through my blood vessels and to my lungs. I then develop excruciating chest pain, cannot breathe and often collapse to the ground. After a minute, the chest pain goes away, and my breathing returns back to normal. There is a residual soreness to the calf area for a short time, but soon it is as if nothing was ever wrong with the leg. These painful leg attacks will happen several times during the week after the severe chest pain.

I am tired and exhausted. My arms are covered in bruises from blood vessels which ruptured and broke during blood draws and IV lines from my last hospitalization. I am grateful to be feeling better than what I was, but the mystery still remains what is causing all these symptoms. I have more appointments and testing in the weeks to come.

I know God knows what is wrong with me. I just cling and hold fast to God and trust that whatever happens, He will lead, guide and direct me in the way I should go. During a time in which I should be depressed and without hope, I rejoice in each day God lets me live. May the source of my health issues be soon revealed.

When no one shows up...Thank You God!

Since coming home from the hospital, I have been struggling to get through each day. My chest is in an incredible amount of pain. My breathing is fast; my heart races. I am frequently nauseous, light-headed and dizzy any time I leave my bed. Headaches plague me all day long. I fight to go about my daily life...but the fatigue threatens to overwhelm me.

When the day arrives for me to host Bible study, I push hard to get everything done. My heart is racing. I am gasping for air. My hands shake from fatigue. I received a message that two of the participants will not be coming. I continue to prepare for the study. I try to eat, but I feel so sick. I eat a tiny amount of food and then abandon the task. I wonder how I am going to survive Bible study. At any moment, I feel as though I am going to collapse from exhaustion.

I have a rule for Bible study: I attend unless I am in the hospital or have an avoidable test, procedure or medical appointment. I always go to Bible study no matter how poorly I feel.

When the start time for Bible study arrives, no one shows up. I wait 15 minutes. No one comes. I praise God for the night off. I crawl into bed and am overwhelmed with gratitude for this time of rest. I nearly start laughing. Despite feeling so unwell, the thought never entered my mind to ask God to cancel Bible study. I sigh and pray to God, "Thank You for watching out for me. Thank You for continuing to lead and guide me. Thank You for the night off. What a tremendous blessing."

Something is wrong...something is very wrong

I sit in the kitchen eating a late lunch. All day, I have been feeling very unwell. I have constant chest pain, and the last several days my shortness of breath has been severe with little exertion. I am short of breath as I gulp down some food. I am extremely exhausted. I decide I should go back to bed.

When I arrive in my bed, the chest pain is intense. I feel as though I cannot catch my breath. My chest forcefully rises and falls. I know something is terribly wrong. I try to reassure myself everything is fine. Perhaps my airways are being partially obstructed by mucus. I run saline through my nebulizer. My breathing becomes more and more ragged. I feel my body using a tremendous amount of energy trying to force air into my lungs. My ventilator is alarming like crazy. I tell myself I will run my nebulizer until the saline runs out. If I am still struggling to breathe, I will tell my parents I need to go to the emergency department (ED).

With each passing breath, my symptoms increase. The pain in my chest feels as though someone is strangling my heart. It also feels as though the blood vessels leading to my heart are under tremendous pressure; they are exploding in pain. Pain shoots across my chest away from my heart and toward my arms. I am trying not to cry, but tears want to spring forth. Things keep getting worse and worse. I need to go to the ED but my nebulizer is still running. And just when I am thinking all these thoughts, my mom enters my room. I instantly praise God because I need to tell her to take me to the ED, but I did not have the energy to travel all the way to the living room to tell her this. I quickly tell my mom I am very sick and need to go to the hospital. She leaves my room and grabs the things she will need for the journey.

I try to get out of bed, but the pain! Oh the PAIN! I cannot breathe! I am breathing so hard that my airways make a high pitched wheezing noise. I feel as though I cannot get any air into my lungs. I gather up some items I need to take with me, but I can barely move. My mom arrives back in my room and asks how she can help. Soon, my parents are driving me to the hospital.

It is a 43 minutes journey from my house to the emergency department which we feel can best handle my medical case in my immediate home area. As we travel, the pain gets worse and worse. I am really struggling to breathe. I start coughing because I simply cannot get air into my body even though my ventilator is running. There is one crushing wave of pain which seems as though it is going to kill me and then, like magic, the incredible pain and pressure on my chest instantly lessens. My breathing becomes less labored. The immediate sense of impending doom disappears. My chest is still sore. The pain is still there, but it is so much better than what it was. I am still in a sorry state, but I think I do not need to go to the ED. If things are getting better, I do not need to endure a traumatic trip to a medical facility. But I refrain from relaying this to my parents. I do not want to go back home and have everything become worse again.

The pain and pressure on my chest increases and decreases in intensity for the rest of the trip. When we are near the hospital, I ask my dad to stop at a convenience store because I have to empty my bladder. (I know this is a good sign. When under severe stress, your adrenaline levels are high. High adrenaline makes it hard to go to the bathroom. If I am feeling the urge to go, my body must be getting back on the path to better health.) I exit the car and huff and puff into the facility. The pain in my chest greatly intensifies now that I am moving. I do my thing and go back to the car.

When I arrive at the ED, my blood pressure and heart rate are elevated, but I know they are much lower than what they probably were an hour ago. I am taken back to a room. Blood is drawn. The lab work shows my d-dimer (the test which is used to check for blood clots) is higher than my normal, but it is less than the threshold needed to indicate a clot. To my shock, my white blood cell count is elevated. I ask myself, "Could this be pneumonia?" But I know it is not.

Pneumonia can come on quickly, but it does not quickly disappear without any intervention. I have never had crushing chest pain like this when I have had pneumonia. Pneumonia chest pain feels like an elephant is on your chest; it feels as though your chest is heavy. It does not feel as though someone is trying to crush and squeeze your heart; it does not send pain shooting away from your heart toward your arms. I know it must be a blood clot or something blocking blood flow to my lungs.

During my time in the ED, I have another episode in which I have severe chest pain and fight hard to breathe. The symptoms build up over an hour and then suddenly my symptoms dramatically decrease in intensity. I am still short of breath, and my chest still hurts, but it is nothing compared to what it was.

I am admitted to the hospital under the guise of pneumonia. The next day, my white blood count is elevated above my normal baseline, but it is now in the normal range for the test. It is believed the antibiotics worked. I have a suspicion that the elevated white blood cell count could have occurred due to severe stress (as severe stress is known to cause an elevation in the production of white blood cells)...and now that I was no longer in severe distress, it was naturally going down on its own.

I keep my theories to myself. I am just grateful "something" was found during my ED visit. There is nothing worse than being severely ill and being told you are perfectly healthy. I leave the hospital and am grateful I survived another one of these attacks. There is something wrong...something very wrong. I hope and pray in the next few weeks after I have more testing done, the source of these attacks will be figured out.