When boredom becomes a blessing

As I sit in Bible study, I am fighting to keep my eyes open. After spending five long days in the hospital (and subsequently four nights without almost no sleep), my body desperately wants to slip off to dreamland. 

As we go through prayer requests, an attendee asks how I have been. She has been away for several months visiting her family and helping her daughter make a cross country move. I briefly state I just got out of the hospital and arrived home about 2.5 hours ago. I am feeling much better now that I have been on IV antibiotics.

Another attendee at Bible study points to her heart and says, "Don't forget about all the other things you have been through." As I look at her hand, my mind quickly thinks back to the last three months. Oh yeah, I had all those issues with my heart and blood clots. I am stunned as I realize the last three months have been a marathon. I have had countless appointments and tests. I lost count how many times I went to the emergency department. Then I also had some hospitalizations. 

I am in disbelief this has been my life. How did this all happen? Where did my tranquil life from this spring go?

I think back to the month of April. I am relaxing on the porch and am incredibly bored. I want to do something; I want to go somewhere. But strict lock-down measures mean we are not allowed to go anywhere unless it is "essential". I pass my days writing Bible studies and studying God's word.

As Bible study begins, one attendee asks how I had time to write a Bible study for this week. I smile and say, "Oh, I wrote this back in April when we were in lock down." I then nearly start laughing. All those days and weeks when I was yearning to go somewhere, I had used the time to get ahead in Bible study. I could have never imagined how valuable those days would be now that I have so much less time. As much as I hated and despised the lock downs, I thank God for this blessing. It is incredible how God used even stay-at-home measures to set up a better tomorrow. What a mighty God we serve!

More Hospital Fun (Part 2)

As I enter the entrance to the emergency department (ED), I try to reassure myself this is a good idea. I have been progressively becoming more and more short of breath and have been coughing. I know the bacteria in my lungs is making me mildly sick. My chest x-ray will be normal. My white blood cell count will be normal. The bacteria is getting ready to throw a party, but right now, it is just in the planning mode. The invitations are being sent out across my lungs to a future event, but at the moment, nothing exciting is happening.

I am taken back to a room in the ED. My pulmonologist's office called over to the ED to inform them I was coming. I relay the information to the ED doctor. I am surprised my pulmonologist sends over the sputum culture results which indicate I have a bacterial infection in my respiratory tract. Even when my chest x-ray and total white blood cell count come back normal (although the differential white blood cell counts shows a white blood cell shift common with a bacterial infection), I am given IV antibiotics. This never happens. If my total white blood cell count is not elevated, I am always told I am not sick and am sent home. But today, everything is different.

After receiving IV fluids and antibiotics, I begin to feel a little bit better. Four and a half hours later, my primary care team evaluates me in the ED. The doctor agrees with the pulmonologist to admit me to the hospital, place a PICC line and start me on IV antibiotics. I am grateful something is going to be done to get rid of the bacteria in my lungs, but I am also feeling very unworthy. This is how I always dreamed my respiratory infections would be handled. My pulmonologist would make suggestions, and they would be followed through at the hospital. However, this has rarely, if ever, happened. Whenever I come to the hospital, everything goes awry. Doctors unfamiliar with my medical case make decisions contrary to my medical team. The infection is not treated. I am sent home sicker than when I arrived. I am soon back in the ED with a severe infection including sepsis.

The rest of my hospitalization is rather uneventful. I have a PICC line placed. Home IV antibiotics are ordered. Despite all my blood work and imaging being normal, the bacteria growing in my sputum culture is taken very seriously.

As I leave the hospital, I shake my head. I wonder what I did to deserve such amazing care. What did I do to finally receive early intervention for a respiratory infection? And all this happened at a local hospital. All this happened without having to drive nearly 400 miles for medical care.

I am overwhelmed with joy and gladness. I thank God for this one reprieve. To receive great care without having to fight for it is enough to bring me to tears. It has been a rough year. I thank God over and over again for His abundant kindnesses.

 

 For the link to Part One, click here

 

 

More Hospital Fun

I have been very blessed these last many months that I have been free and clear from any lung infections. It has been about six months since my last bout with pneumonia. This is one of the longest (perhaps it is the longest) time I have ever gone without having a respiratory infection since I got my tracheotomy in May 2017.

I am at a local hospital, which is unusual. I often travel nearly 400 miles to the medical facility where my beloved pulmonologist works. However, since she dropped me as a patient in March, I have been trying to stay well and not visit doctors.

When I was in the hospital in July for a blood clot in my lungs, a primary care physician took my case. She followed up with me in clinic. She gave me four referrals to local doctors, one of which was a pulmonologist. I cancelled my first appointment with the pulmonologist. The second appointment he cancelled. The third appointment I was able to do a telemedicine appointment. The doctor knew about tracheostomies and ventilators. Since I was not feeling well, he wanted to culture the sputum from my lungs. He said I would probably go on IV antibiotics.

At my next appointment, I had a telemedicine with a nurse practitioner (NP). She was clueless about the bacteria growing in my lungs. She gave me oral antibiotics which were not effective against the bacteria. Since I sounded sick at the appointment, she told me to come into the office for my next appointment. A week passed.

At the in-person appointment, I was very short of breath and was coughing. My medical case was now down-graded even more to just a nurse. She said the chest x-ray I had done a few days prior was clear. That was good news. I did not have pneumonia. I tried unsuccessfully to explain my chest x-rays are 80-90% normal when I have pneumonia. The only way the pneumonia shows up is via CT scan. The nurse could not understand what I was saying. My chest x-ray was clear. I did not have pneumonia. End of story.

As the nurse talked to me, she finally looked at me. She suddenly noticed I was short of breath and really struggling to breathe. She immediately sprang up and listened to my lungs. She ran out the door and summoned the NP. The NP (who I saw via telemedicine the week before) was concerned I was sicker than I was the previous week. She immediately said I needed to go to the ER to get IV antibiotics. She called over to the hospital to tell them I was coming.

I was not in favor of going to the hospital. My chest x-ray was clear. I was not breathing well and was coughing, but I knew my white blood cell count would not be elevated. (I have been sick so much, I can tell you what my white blood cell count is fairly accurately by the way I feel.) If I went to the ER, I might be sent home. It would be another blemish on my chart of going to the ER and not being sick. My mom talks me into going to the ER.

For the link to Part Two, click here

 

Be calm. Ignore the pain.

Since February, I have been having significant pain in my gut. It took me several months to figure out the pain was from my pancreas. Usually the pain is in the middle of my abdomen. Now, it is around my belly button and radiates to the left side of my upper abdomen. I fought through the symptoms, but then in July, I decided I needed to get medical intervention. The pain and frequent bouts of diarrhea were impeding my ability to eat.

In August, I had a telemedicine appointment with a GI doctor I saw in 2018 for my pancreas. The last time he did a procedure called an endoscopic ultrasound (EUS) and another procedure called endoscopic retrograde cholangiopancreatography (ERCP). The EUS is just a scope which goes down your throat, through your stomach and stops in the first part of your small intestines. It then uses a tiny ultrasound to get images of your pancreas. The ERCP is similar, but the endoscope has an extension on it which makes it possible for the scope to go up your bile ducts to your liver and pancreas. It uses a video camera for imaging.

At my appointment, I told the doctor I thought I needed another ERCP. He decided he would only do an EUS unless a CT scan indicated my pancreas had a large abnormality. My CT scan came back normal, but without being able to have contrast dye, the only thing the CT scan could show was that my pancreas is normal in size. It could not give any internal images and could not indicate if the inside of my pancreas had any abnormalities. The procedure remained the same--only an EUS.

The day of my procedure, the doctor called in sick. Thankfully, another physician filled in to do the procedure. After the EUS, I was told a bile duct was enlarged. The cause of the enlarged bile duct could not be seen on the ultrasound. I may need an ERCP, so a video camera can visualize the abnormality. The replacement doctor would relay the information to my doctor. My doctor will decide if I need an ERCP.

I am trying to remain calm and remember God is in control, but I am frustrated. I absolutely despise scopes into my pancreas. They cause a TREMENDOUS amount of pain and make my pancreas extremely angry. The thought of having another scope makes me want to cry. Why couldn't the doctor just do both procedures at the same time and if he did not need to do the ERCP, he could have cancelled it after doing the EUS?

After having the procedure, I was shaking in pain. I was given lots of fentanyl. I struggled during the 6 hour car ride with an angry pancreas. Now, my pancreas has been causing me lots of issues. I can eat only a little bit, and then it explodes in pain for many hours on end.

I do not want to have another scope, with this time the procedure being the ERCP, but I have been very sick with pancreatitis for many months. There is something wrong with my pancreas. We need to figure it out, or I will be on my way to the grave. When you cannot eat, you cannot live.

 

What I learned on Tuesday night

On Tuesday, I did not know there was a debate. When the attendees arrived for Bible study, they were eager to have a fast study and to go home a few minutes early to watch the debate. As study started, I was shocked at how hard it was to speak. My chest was heavy and ached in pain. Even though I took nitroglycerin and albuterol, it was very hard to force air through my vocal cords. My airways were swollen, and I was gasping for breath.

I struggled through Bible study. My mind was often blank. I could not recall simple things. I pushed through. About ten minutes before 8 p.m., Bible study disbanded. Everyone headed for their homes.

During the debate, I was doing researched for an upcoming YouTube video. I was flabbergasted to read hand sanitizer does a very poor job killing the novel coronavirus. If the hand sanitizer has less than 60% alcohol content, it is almost worthless against the virus. If the hand sanitizer has 60-95% alcohol, it is able to paralyze and kill some virus. However, hand washing with soap and water destroys the virus and gets rid of nearly 100% of the virus particles from your hands. Hand washing is by far superior to hand sanitizer. (And this was true for many other viruses and bacteria too.) So if you want to save lives, wash your hands!

I also helped some individuals on Facebook who have chronic illnesses. I was able to share some of my experiences. With much heart-ache, I again discovered how many people are erroneously diagnosed with Munchausen Syndrome when they suffer from chronic medical conditions.

After the debate, I worked on making a YouTube thumbnail for my next video. I then curled up in a ball to go to sleep. Sleep was elusive. A bad headache and GI pain plagued my body.

During the night, I had a dream in which I had to have a GI procedure. It was found out what was causing all my GI issues. I then had emergency surgery. Before and after the surgery, my pancreas and GI tract were in extreme pain. I woke up. The surgery was a dream. The pain was real. I tried to go back to sleep, but my headache was back, and the GI pain was unrelenting.

All too soon, I had to force myself out of bed. As I got out of bed, my heart raced; my chest erupted in pain; I struggled to breathe. My body starting coughing, trying to clear my airways. I wheezed and could feel my tight airways resist the incoming air as I gasped between coughs. My head throbbed in pain. I fought hard to begin my morning routine and get out the door for a long day of medical tests and an appointment.

Now you may be wondering, “Did you not watch the debate?” The answer is no. I have a busy schedule, and time is precious. If I want to hear two senior citizens argue, I can frequently experience that any time my parents get into a disagreement. I do not like drama. My body cannot tolerate stress. It is best to make better use of my time and do things which will allow me to be more productive. Remember, wash your hands and wash them frequently!

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.