A Look Back to 2020

This last year has been one of the most challenging years of my life. But with all obstacles, there is also a satisfaction I made it.

Here are a few highlights:
In January, my infectious disease doctor and I agreed I should get a port-a-cath. A port is a device implanted in your chest and is threaded into a large vein which allows a person to have permanent IV access. With this device, I could get IV antibiotics at home without needing to go to the hospital and have an IV line (PICC line) placed. (Due to having a ventilator and tracheostomy, I have frequent lung infections which often require IV antibiotics.)

There are some decisions I wish I could got back in time and change. This is one of them. I have a genetic condition which affects my connective tissue, specifically it affects my joints and blood vessels. With Ehlers Danlos Syndrome, my blood vessels are prone to collapse anytime I am stuck with a needle. The thought never crossed my mind that getting a port could also cause negative consequences.

As soon as the port was placed, I was in a tremendous amount of pain. My heart was racing; my limbs were shaking uncontrollably. I thought I was going to die from the pain. I was sent home and told to take Tylenol. (What I did not know at the time was the vein in which the catheter was placed had collapsed. This prevented blood from the left side of my head and neck to be able to return to my heart.)

Over the next days and weeks the pain grew worse and worse. I had an incredible amount of pressure on the left side of my head and neck. It felt as though my head was going to explode!

The upside to this all is it helped alleviate a fear I have had. In 2010, after I had returned from the magical clinic in Minnesota and was told there was nothing they could do for me, I wanted to commit suicide. God intervened before anything ever happened, but I have always been afraid if I was in that much pain and distress again in the future, would I take my own life? Thankfully, I now know the answer is no. During the 42 days of being in intense agony, I clung to God and kept asking for His help. This situation helped me realize how far I have come since 2010. For that, I am tremendously grateful.

In March, I had the port removed. It took several weeks for the pain and all my symptoms to go away. During this time, my beloved pulmonologist dropped me as a patient. That event completely shattered me emotionally.

In April, my mom began watching endless YouTube videos due to the lock-downs. She told me I should have my own channel. I have for a long time wanted to start a YouTube channel, but I am not very technology savvy. After being very sick this winter/spring and then being emotionally drained from my pulmonologist dropping me as a patient, I was at an all-time low. I figured I would shoot a YouTube video and if it failed, it would not make a difference because I really could not be any lower than what I was. At the end of April, I filmed my first video. To my shock, it was a success! I kept shooting one YouTube video a week, and the channel has continued to grow and prosper.

My YouTube channel has forever changed my life. I have been connected with others who have ventilators and/or tracheostomies from all over the world. I am blessed to be able to help others and to share in our quest to live the best life we can.

YouTube has allowed me to do what I love—share medical information, tell stories, see the good in all situations and educate the world about some of the conditions I live with.

I invite you to check out my YouTube channel. Click here to view my YouTube channel.

The major lesson I learned from 2020 is sometimes you have to be completely shattered to the ground before you will risk starting a new endeavor. The process is painful, but in the end, shattered pieces can create a beautiful mosaic.

I hope everyone has a safe and blessed 2021!

Back to Where I Started

As the days draw closer and closer to January 1, I have been trying to get all my prescriptions filled. It is not that I need them filled or will incur more financial strain if I do not get them, but my insurance changes at the beginning of the year.

The pharmacy I currently use will no longer be an in-network pharmacy. I have yet to completely understand what this means for me, but the preliminary answer has been on January 1st, none of my drugs will be covered by my insurance at the pharmacy I usually use. This means I will have to sift through all my prescription records at my current pharmacy and have my new pharmacy call my old pharmacy to transfer the prescriptions. This would not be a big deal if I took medicines consistently, but many of my drugs are once in a while drugs. I get them filled once or twice a year. To alleviate this hassle, I have trying to get all my meds filled. That way, I will be set for a majority of next year.

I have one prescription which I have a three month supply left on the drug. I submitted the drug to be filled online last week. Today, I received a notice my insurance does not cover online medicine refills. I need to call my local pharmacy and have them fill it. I call my local pharmacy, They tell me they cannot full it because it has been filled at another location. I am given the store number. I either was given the wrong store number, or I wrote it down, but a quick internet search told me the branch was located in the Chicago area.

I call the Chicago branch and talk to a very sweet man. (I believe he was the pharmacist.) He looks up my information and tells me the store number where the prescription was filled is the online branch. He gives me their direct phone number.

I call the online branch. I am told there is an issue with my account. There are two insurance numbers on it. The woman asks for my insurance information. She updates the system and says she will try to get the drug out to me ASAP. I hang up.

About an hour later, I receive an email, My prescription cannot be filled. I had another prescription filled at the beginning of the month. I take nine tablets a day. The prescription was for 90 pills. Doing some simple elementary math, ninety pills would be a ten day supply. According to my insurance, ninety pills should last me 30 days. Hence, I am not eligible to fill my prescription until after January 1st.

I could call and contest my insurance and explain 90 pills will only last me ten days. But I have already lost an afternoon calling pharmacies and getting no where. I will just wait until after the first of the year and try to get the prescription transferred. If I am unsuccessful, it is not a huge deal. I will have to try to find a primary care doctor and attempt to get a new prescription sent to my new pharmacy. (I really don’t have a primary care doctor. I usually ask for prescriptions when I am hospitalized. It saves me time and effort trying to explain my medical conditions to yet another doctor.)

So, at the end of this all, I am right back where I started. I have a prescription which needs to be transferred to a different pharmacy after the first of the year.

 

I had an idea; God executed the plan

 The last couple days, it has been on my mind to change the line extension on my peripherally inserted central catheter (PICC line). I noticed yesterday, the plastic, which the line is made from, seemed to be more rigid and not as flexible as I remember it once was. I thought to myself, “I should probably change this extension before the plastic line cracks.”

I was reminded of an incident which happened six weeks ago. I had placed a line extension on my PICC line, but the plastic seemed to be stiff. The extension was from some PICC line supplies I had received two years ago. The packaging said the line extension was good until 2022. On morning, I woke up and the end cap completely broke off from the extension set. Thankfully the extension set was clamped or I would have bled out during the night and/or possibly have gotten an infection in my line. I was able to replace the extension line on my PICC line without any repercussions. Thinking about this event made me contemplate changing out my line extension. I went to bed and pushed the thought out of my mind.

When I woke up in the morning, I was shocked to find my extension set had disconnected from my PICC line during the night. It did not break, but the extension line somehow unscrewed itself from my PICC line. I was left flabbergasted, but grateful there was nothing wrong with my PICC line. When the extension set disconnected, the cap on the end of my PICC line automatically closed. There are no risk for bleeding out or infection.

I smiled and laughed as I picked up the disconnected line set. “Well, God. I guess it was time to change the extension on my PICC line. Thanks for helping me out. I will now put a new extension on my PICC line.”

I found a new line extension in my medical supplies dropped off last week by my medical company. I collected the needed materials and placed them on the dining room table. My mom cleaned off the end of my PICC line and placed a new extension on to my PICC line. And just like that, the task was done.

A Blast from the Past

As I go from week to week creating material for YouTube videos, I find this blog a wealth of information. Many of my YouTube videos are based on one of my blog posts. With that said, it is always a walk down memory lane as I re-read my experiences from that last 4+ years.

It is always a mixture of emotions remembering and reading about my previous experiences. I have learned so much. And as much as I want to say I have grown spiritually, I am always blown away when I read about my faith. Really? I had that much trust in God all the way back in 2016?

As I read my blog posts, I am sad when I read about a bad medical situation, but I always smile as I think about the miracles and abundant blessings God bestows upon me. I rejoice reading about good times, and thank God I made it through some really horrible scenarios. And sometimes I just laugh.

One thing I am always grateful for is not knowing how situations will pan out. I am grateful I could not foresee three years ago all the pain and mental anguish I would endure during the next year as I tried to get medical treatment for a cyst which was blocking my main pancreatic duct. (Translation into every day English: a cyst was blocking all the enzymes my pancreas was releasing to digest food. Any enzymes my pancreas made stayed in my pancreas and digested my pancreas.)

I sit here three years later in another pancreas flare-up, I wonder how this will turn out. Do I have another cyst, or is scare tissue obstructing my pancreas duct? What is causing my increase in pancreas pain? What can be done to relieve this pain? Like all things, I will just have to wait until one day this too will be a blast from the past.

Suddenly blessings appear

Sometime in the last 12 years, my life has been turned into a series of unfortunate events. Now the events which usually transpired were never huge, major catastrophes, but it seemed simple things were never simple. I would finally get a doctor who understood my medical case, and the doctor would move out of state to take a job at another medical facility. If I would finally get a diagnosis and be referred to a doctor who could help me, I would often be told my case was too complicated. I should seek care else where. I finally abandoned the medical community and started living my life the best I could.

This all worked until May 2017 when I got a tracheostomy and was started on invasive ventilation. Now, I needed medical professionals to help guide my case. I was in unfamiliar territory. Seeking medical care often turned into a fight to stay out of nursing homes (because being on a ventilator is too complicated to be managed at home), and I even had to fight to stay alive. (Some doctors told me I was too complicated. It was time to give up, put me in a drug induced coma, disconnect my ventilator and let nature take its course.) I fought so hard to try to get proper medical care, but everything would often crumble around me.

In July 2018, I acquired a bad bacteria called pseudomonas. I quickly detected the new infection because my sputum changed. I begged for medical intervention, but the bacteria was not taken seriously. I was sent home. Three weeks later, I was in the emergency department, very ill. I was admitted to the intensive care unit (ICU). The bacteria became resistant to the antibiotic I was being given. I was not told this. I was given more and more of the same antibiotic. I went home after 12 long days of being very sick. By the time I got home, I was coughing up lots and lots of blood.

Five days later, I was back in the emergency department, extremely sick. I was admitted to the ICU, and I was finally given a different antibiotic. After five days, I was sent home with no antibiotics. My bacteria then became resistant to all antibiotics. Subsequently,  I had to take an extremely expensive, new and experimental drug which caused an anaphylactic reaction. I was then placed back on a drug my bacteria was resistant to.

From this time forth, it has been a constant struggle to get antibiotics. Thankfully, my bacteria has changed back into being sensitive to most antibiotics. This means, the cefepime I was usually given was now effective against the bacteria. I tried and tried to get a long course of antibiotics to get rid of this infection, but my efforts were often thwarted. Something would always happen which impeded me from getting a long, full course of antibiotics.

This spring, I was absolutely exhausted. I was very sick with multiple infections in my airways. When I gave up and stopped fighting, suddenly everything started working in my favorite. I was finally given a month’s worth of antibiotics. The infection cleared, and I was relatively healthy for six months.

When I became sick again this fall, it was a battle to get antibiotics. I was miraculously set up with three weeks worth of antibiotics. But it was not long enough to clear the infection. I remained sick. To my shock, my doctor in the outpatient setting prescribed another month of IV antibiotics. When this all seemed to be crumbling again due to miscommunication, God arranged for some miracles. Suddenly, I am now on a long course of IV antibiotics.

After fighting for so long, suddenly everything seems to be working in my favorite. I usually am in and out of the hospital every two to three months with a bad respiratory infection. Now, in the past nine months, I have only been hospitalized once for my pseudomonas infection. That is an incredible blessing and miracle.

Trying to explain pancreas pain...it's not my stomach!

I go to my medical appointment today. I am famished from lack of food and water intake. I take three small bites of an apple and drink a little bit of water before heading into the medical office. By the time I see the nurse (she will be the one doing the appointment), my body is trembling, and I am fighting hard to breathe from the pain shooting forth from my pancreas. I can barely move my left arm from the incredible pain radiating to my left shoulder. I am fighting hard not to scream.

The nurse tells me even though I do not eat gluten, I am probably reacting to eating gluten unknowingly. I explain I do NOT eat anything except fresh or frozen fruits and vegetables. I do not eat any packaged products. The nurse decides maybe it is H. pylori causing my issues. I have been tested numerous times for this bacteria. I even had an endoscopy in September which included biopsies for the bacteria and blood and stool tests. In 12 years of being tested for this bacteria, all tests have been negative. The nurse insists it could be lurking around my stomach somewhere making me sick.

The nurse keeps pushing medicine which blocks the acid in the stomach. I CANNOT take these medicines. I do not have heart burn, but these medicines give me the worst heart burn, nausea and make me puke my guts out. I have been told this is probably because I have low stomach acid. These medicines decrease the acid in your stomach. If you already have low stomach acid, decreasing it even more means food is not broken down in your stomach. Undigested food will try to enter your small intestines and cause MAJOR GI upset. The nurse cannot comprehend this. Maybe I need to try a different medicine to decrease my stomach acid. I give up trying to tell her heart burn is NOT the reason I am here today. I HAVE PAIN IN MY PANCREAS!!!

I cannot eat any food in the morning. In the afternoon, I can eat a tiny amount of vegetables and some water. My pancreas spasms, causes intense pain and radiates pain to my shoulder. The spams are so powerful, they make it impossible to sit up. At times, the spasms are so violent, I double over in pain and cannot move. It is somewhat manageable with powerful pain medicine…pain medicine which will probably run out all too soon. At night, I can swallow a little bit more food. The pain and pancreas spasming remain, but it is tolerable. When I go to bed, my pancreas pain and referred pain to my shoulder make it difficult to sleep. Then, in the morning I start the day all over of fasting until late afternoon.

I leave the appointment in frustration. The nurse orders some basic blood work and a stool sample to check for H. pylori. (I just had these tests done in October by this clinic. But, the nurse is convinced H. pylori is causing my issues.)

I don’t know what to do. I am trying to see a different doctor, but the next appointment is not until December 30. I am not sure I can wait that long. Malnutrition, my pancreas spasming and the pain are greatly taxing my body. I look at the calendar and ask God for a few Chanukah miracles. I am in so much pain. I am so tired.

Food vs. Pain: It begins again

 Since February, I have been experiencing significant pancreas pain. It started out as a nuisance. I could not figure out why the area around my belly button hurt. Finally one day I pressed on my belly button, and the pain radiated to my pancreas. My heart broke when I realized it was my pancreas which was causing the pain.

In 2018, I had a similar experience with pancreatic pain. Unfortunately, I tried to fight it out for a long time. I ended up losing a lot of weight and had several health crises before I was able to have a procedure done to mitigate my pancreas issue. This time, I thought, I would get treatment early.

I had an appointment with my GI doctor in August. In September, I had a procedure done which found my bile ducts were inflamed. In October, I had another procedure to clean out and open up my bile ducts. This time, the pain did not go away.

I kept telling myself I was imaging my pain was getting worse. In November, food was making me really sick. I changed my diet to be almost strictly vegetables. This alleviated some of the pain. During the week of Thanksgiving, the pain was getting bad. I desperately tried to eat turkey on Thanksgiving, but I became extremely sick and developed horrible pain in my pancreas after taking a few bites.

Last week Friday, I became abruptly sick in the early evening. I went to bed. I felt incredibly nauseas. I took some anti-nausea medication. I stayed in bed for the rest of the day. Over the weekend, the pain was intense. I pushed through. I would wake up in the morning with bad pain in my pancreas. When I ate, the pain became worse. I would go to bed. In the evening, the pain would lessen to allow me to eat.

Yesterday, I was in severe pain. I stayed in bed. In the evening, the pain miraculously lifted. I was able to eat some food and enjoy time out of bed.

This morning, I woke up in severe pain again. I tried to eat some soup and a small tangerine. The pain exploded in my pancreas. I couldn’t sit up. I was doubled-over. I tried and tried to get over the pain. When my body would not stop shaking uncontrollably, I took a half tablet of some emergency pain medicine. I waited. It did nothing. Over an hour later, I took another half pill. Nearly an hour later, I had pain relief. I was able to sip some water.

Now, the pain medicine is wearing off. I have eaten very little. I think to myself, “I should eat something,” but I can feel my pancreas and intestines are very temperamental. They ache and the pain is significant. Do I dare try to eat? Do I want to waste another precious pain pill?

I am thankful I was able to call and get an appointment to see a provider at my GI doctor’s office on Friday. Maybe she will be able to help. I am tired of fighting through this pain. I wish eating was not such a constant battle.

A Happy Accident

As I have been filming my YouTube videos and learning how to operate a Mac computer, I have been on a steep learning curve. There are constantly things I need to figure out how to do. I am very thankful and grateful I watched a few YouTube videos which mentioned a some short cuts on my computer. For example, when using iMovie, you can start and stop the video by pushing the space bar.

One shortcut someone mentioned in her video was using command shift 4 to get a cursor. You then have to drag the cursor to highlight what you want to screen shot on your screen. Once you let go of the cursor, the image will be captured as a photo. This is a great feature. I constantly use it. But there is one problem. Often I am trying to capture a slide or just a small  area of my screen. If I do not get the cursor correctly lined up, the screenshot is a little bit askew. This is not a big deal, but when there are two slides back to back which I want to use in my YouTube video, this causes the frame to jump when switching between slides.

Tonight, I was working on my pre-production for my next YouTube video. I thought I hit command shift 4, but instead of the compute taking a screen shot, I got a preview window with the ability the adjust the screen shot to the correct dimensions. I made the box bigger and lined it up with the outline of my slide. I then hit the “capture” button at the bottom of my screen. Then, the computer took the screen shot. I was baffled how I did this. I tried doing it again, but I just got the regular screen shot cursor.

I then thought, maybe I hit command shift 5 on my keyboard instead of command shift 4. I tried the new key configuration and behold, the box appeared to adjust the area on my screen I wanted before the computer took a screen shot. I was absolutely thrilled! After all this time struggling with the cursor on my keyboard to try to get the image I wanted inside the screen shot box and take a screen shot, now I can preview the area on my screen I want to capture and adjust its dimensions before the computer takes a screen shot. Wow! This is going to save me so much time and make my videos look more professional. I love when God provides a wonderful happy accident!

World AIDS Day 2020

On December 1st of every year, we take a day to recognize a disease which has ravaged many communities and populations. This year, the fight to end HIV/AIDS, has taken a backseat to COVID. Resources and medical professionals have been shifted away from HIV/AIDS care and prevention to deal with a new virus. Unfortunately, this has left many people in desperate need of medical attention.

During 2020, approximately 12 million people are waiting to receive care for HIV. (HIV is the virus which causes AIDS.) One of the places most hit by HIV/AIDS this year has been South Africa. There have been about 225,000 people with HIV/AIDS in the South African province of Gauteng who have discontinued their anti-retroviral treatments this year due to decreased access to care and other issues which have arisen from COVID. This is just one province in one country afflicted by HIV/AIDS.

It is hard to calculate how many people have not sought treatment for HIV/AIDS worldwide due to shortages of medical staff, testing, resources and other difficulties which have arisen due to COVID. The year 2030 was the year slated in which HIV/AIDS would be eradicated from the world. However, COVID has delayed progress on medical treatments, resources and research. At this moment, it is hard to know how far back the fight against HIV/AIDS has been pushed, but countless people have been affected.

Please take this day to remember those around the world affected by HIV/AIDS. There are about 38 million people around the world infected with HIV. Pray for the approximately 700,000 people who will die from AIDS-related complications this year. Pray for the areas of the world most afflicted by this virus—South Africa, sub-Saharan African countries, China, Latin America and the Caribbean. Pray that access to testing and medical treatments will be readily available to those who need them. As for me, I keep praying that some day soon this virus be nothing more than a distant memory.

Happy Thanksgiving

As I lie in bed scrolling through Facebook and enjoying photos of people's Thanksgiving meals, I smile thinking about past meals I have eaten. I remember the pumpkin pie, mashed potatoes, gravy and stuffing! Oh, I would eat and eat until I could eat no more. The hot rolls right out of the oven in which the butter would melt into liquid were amazing and drowning my pumpkin pie in a sea of whipped cream was the best part!

This year, my meal was much like it always has been in recent years--turkey. Just turkey. Everything else is on my list of things my body cannot tolerate. I have been eagerly awaiting this turkey since last year as organic whole turkeys can only be obtained at Thanksgiving.

I have been having significant issues with my pancreas lately. Eating protein leads to major pain, nausea and feeling very sick. I hoped my precious Thanksgiving Day turkey would not cause any illness. Unfortunately, my pancreas issues did not take a holiday today. After eating some turkey, I had to go to bed for the rest of the day. The GI pain, headache and feeling generally unwell made it impossible to do much more than lie on my bed with a cloth over my eyes.

Hopefully tomorrow will be a better day. Hopefully my pancreas will be able to rest and feel better in the morning. I am thankful I am home (and not in the hospital). I continue to pray for Rebecca and Caleb--two young adults very sick and in the hospital this Thanksgiving.

Happy Thanksgiving to everyone!

Be Thankful—Always

As my YouTube channel continues to grow, I often think about my dear friend Milly. It was through her YouTube channel our friendship was born. We navigated the world of doctors together and shared insight on how to live with our medical conditions.

When Milly passed away in 2016, her mom posted on her Facebook page her favorite video Milly made was called Be Thankful Always. In the video, Milly discusses all the challenges she was facing at that moment, but she was thankful for many things. Thanksgiving was coming and her family would be together.

The video is a mixture of happiness and sadness. I have thought about that video frequently over the last four years. The video has inspired me to try to always look for the good in every situation.

As the time came to shoot a video for Thanksgiving, I could not help but fashion my own video after Milly’s. Life is a mixture of sweet and bitter. There are good days and bad days. If we can remember to be thankful always, even the challenges can be blessings.

May the memory of Milly continue to inspire all those who knew her. May we all find things to rejoice in this day and every day of the year.

A Swing and a Miss

I have been sick since the beginning of September with a respiratory infection. I saw a lung doctor who wanted to be pro-active in treating it. I got my sputum cultured. I had to wait for follow-up appointments. At the first appointment, I saw the nurse who works with my doctor. At the second appointment, I saw a nurse who was lower in status than the previous nurse. Although the doctor wanted me on IV antibiotics, the nurses did not know how to do this. I was sent to the emergency department.

I was admitted at the hospital, given a PICC line and sent home on two weeks of IV antibiotics. It was very clear at the end of the antibiotic therapy, I was still sick and in need of more antibiotics. I could not get in to see the lung doctor for three weeks. In the meantime, I saw my primary care doctor. I was told I needed more antibiotics and was sent to the emergency department. At the emergency department, the doctor told me it was too much work to submit the paperwork to get IV antibiotics. I was sent home and told to follow-up with my lung doctor.

I finally had my appointment with the lung doctor. He was concerned I was still sick. He asked how long I was on the antibiotics. I stated two weeks. He said I should have been on them for 4-6 weeks. He wanted me to go back on the IV antibiotics.

Next, I had to wait a week before I had a follow-up appointment with the doctor’s nurse. She asked how the IV antibiotics were going. I stated I had not received any. She said she had called the pharmacy. I do not know what happened, but the drugs were not prescribed. The nurse said she would call the pharmacy again.

After a few more delays, I finally received the IV antibiotics today. I was excited. Hooray! Now I might be able to get rid of this infection. I opened the box delivered by the pharmacy. My heart sank when I saw on the paperwork I have been prescribed only four DAYS worth of IV antibiotics. I wanted to cry. Four days of IV antibiotics will not do anything. It actually might make me sicker because the antibiotics will cause the bacteria to become more aggressive as it begins to die off. A short course of antibiotics will not be long enough to get rid of this infection.

After fighting for so long, it seems as though I am at a dead end. My PICC line is in rough shape. It needs to be pulled soon. Thanksgiving is fast approaching. I have no follow-up appointment scheduled with my lung doctor. My lungs are heavy with thick bacteria-laden sputum. And now my one hope of getting antibiotics has all but evaporated. I have to continue on and be patient. Hopefully something can be figure out, and I can be back on the road to better health very soon.

How long will the fear and panic last?

As the holidays are drawing near, it is an exciting time as friends are coming to town. However, unlike in years passed, my family will probably not see our comrades.

My mom was talking to a woman who is coming to our area. The woman remarked that although she and her husband were coming to our region, they were going to be spending the time isolated in their rented accommodations. Maybe once a week they would put their lives at risk and venture to the store. But besides this weekly encounter with death, they would not be in contact with anyone.

The fear and panic which has gripped this country boggles my mind. Every year we have viruses which cause illness and kill people. No one has seemed to care much in the past. But, as my friends in politics like to say, “Never let a serious crisis go to waste.” And that is precisely what is being pushed by many state and local governments and media outlets. People are being scared into irrational thoughts like you can “catch” a virus from going outside and breathing fresh air. People would rather stay home and “be safe” than go to the doctor or hospital to receive medical treatment for real medical emergencies such as arrhythmias, heart attacks and strokes. No, it’s much better to stay safe at home than go into a facility in which a person may have a minute chance of being exposed to the invisible virus. People believe being in any sort of contact with another human being means they are putting themselves in grave danger.

I wonder how long this fear and panic will last. This state of paranoia reminds me of the attacks on our country on September 11, 2001. Remember how people would not leave their homes because they were sure it was unsafe to do so? Flying on planes meant they were putting their lives at risk. Every human was viewed in a cloud of suspicion because no one knew if the other person was a friend or foe.

Sometime in the last 19 years, these fears have been erased. A new generation has been born. A number of people who lived through the events of 9-11 have perished. For the rest of us, the memories have faded into the distant past. As with everything before, we survived and continue forward.

As we move toward the holidays, do whatever makes you feel safe. But for me, it is better to see people face to face, talk, laugh and live together than allow fear and panic to ripe us apart. Several of my friends have perished in the last few weeks. They had been staying safe from the world and locked away in their homes; and yet, non-virus related conditions ended their lives. You can hide as much as you want, but time and chance happen to us all. Hoping some day soon we can all be back together again.

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go." (Joshua 1:9)

I'm not an alcoholic. It's my genes!

When I first started developing GI issues in 2009, my complaints were brushed aside. Surely, my pain and symptoms were not as bad as I was making them out to be. Things kept getting worse and worse. I had my gallbladder taken out in 2010. I then kept losing weight and got a feeding tube four months later. A year later, I was still very sick.

After doing extensive research, I discovered it my was my pancreas making me sick. I could not eat fats. I could eat tiny amounts of protein. Fruits and vegetables were my only safe foods, but even these also caused pain and nausea. No one believed me. I carefully unfolded my GI issues to a gastroenterologist and told him my pancreas was the major issue with my GI tract. I was told no, it was not. I went home, ate a small piece of salmon. Four hours later, I was in the emergency department with a pancreatitis attack. The gastroenterologist decided "maybe" it was my pancreas which was causing my GI issues. I was referred on to a pancreas specialist.

For the next several years, I was in and out of the hospital with pancreatitis attacks. I was constantly told I was having problems with my pancreas because I was an alcoholic. When one doctor said this to me, I stared at him and said, "Yes, if you read the 'textbook', it states people who drink alcohol excessively for 30 years or more are at risk for developing pancreatitis. I am only 28. Even if I started drinking in my mother's womb, I still would not have 30 years of alcohol consumption!" The doctor finally dropped the subject. But still, for the rest of my life, any time I mention pancreatitis, I am told it is because I am an alcoholic. 

In September, I had genetic testing done which screened for 12 genes which are known to affect the pancreas. I have patiently been awaiting my results. Finally, my appointment came with my physician. The long wait had come to an end.

The doctor started, "You have this gene variant. In itself, it has a low likelihood of causing pancreatitis. In the presence of other factors such as diet and other medical issues, it can cause issues with the pancreas."

I was so happy. Yes! I have something wrong with my genes!

My doctor continued to the next page. "You also have this gene variant. It can cause recurrent attacks of acute pancreatitis..."

"Excellent!" I thought. "There is something wrong with my pancreas."

The doctor kept going and going. I have SIX gene variants. None of them on their own are known to cause significant issues with the pancreas, but having six different gene variants--one causes chronic pancreatitis, one causes recurrent attacks of acute pancreatitis, one causes pancreatitc exocrine insufficiency, one is associated with cystic fibrosis and two other gene variants are associated with pancreatitis--this is significant.

My doctor joked with me. "Well, now we know you are not a closet alcoholic. You definitely have something wrong with your genes." I laughed, but I also silently winced thinking about all the times I was relentlessly accused of being an alcoholic. I will save a copy of this genetic report to my medical files. The next time I am accused of being an alcoholic (or accused of faking my medical issues), I will pull out these results. Maybe these genetic test results will finally dispel the notion that I am not an alcoholic.

It was also noted on the report there is a STRONG suspicion that pancreatitis runs in the family. More information needs to be obtained and testing done, but most likely there is a gene unique to my family which causes pancreatitis. After all these years, it feels so good to finally be vindicated!

What are you doing here? There's nothing we can do for you.

The last many weeks, I have been fighting off a respiratory infection. I am first given antibiotics which are completely ineffective for the bacteria. A few weeks later, I am given a PICC line and IV antibiotics. The infection gets better, but then it worsens. 

I get another culture done to test for the bacteria. The culture still says I have an infection. It is the same bacteria and the drug I am taking is supposed to be effective at killing the bacteria. I am sick. I go to the doctor. He believes I should go to the emergency department (ED) to get stronger antibiotics. The doctor's superior is summoned. He agrees. I need to go to the ED. I am quite sick.

At the ED, my white blood cell count is right at the cut off for being high. My white blood cell differential shows my white blood cells have shifted and indicates there is a bacterial infection. I am given a different and stronger antibiotic. Shortly after the antibiotic, I feel a little bit better. My coughing decreases, but I am still short of breath and have a hard time talking because I am gasping for breath.

As the day is turning to night, my primary care clinic sees me in the ED. The doctor asks, "What are you doing here? There's nothing we can do for you." I am confused. I do not say anything, but I want to shout, "The clinic, the one you work at, sent me here! Both doctors who are senior to you thought I was sick and needed a different antibiotic therapy." I can sense am going to be released home soon.

One of the doctors tells me, "You are not short of breath. That's good." I don't know if the mask I am wearing is obscuring his vision and hearing, but the respiration rate on my ventilator shows my breathing is quite fast. My rapid breath sounds can be heard quite clearly because there is sputum in my airways. My ventilator amplifies the sound. I can only speak a few words and then stop to gasp for breath. 

Knowing this doctor does not like to work (I have had him as a doctor before in the hospital and have witnessed him a number of times pawning his work off to others, not filling out paperwork, etc. Only when his supervisor is around does he step up to the plate and do his job.), I know he is going to do everything possible to not work. Sending me home with different antibiotics requires him to fill out some paperwork. He admits this and says, "That's a lot of work."

One more blood test is ordered. I am given one more round of an IV antibiotic. Soon, I am being pushed out the door. I feel unwell. No new antibiotics are prescribed.

I am grateful to be going home, but I am also heartbroken. I do not feel well. I am concerned my white blood cell count is so high. I am still on IV antibiotics, but they will be ending very soon. What will happen then?

Overwhelmed with fatigue and exhaustion, I rifle through my antibiotic supply. I normally do not take antibiotics needlessly, but there is something (either the bacteria cultured from my lungs or perhaps a new infection in my airways or my PICC line) causing me to be sick. I select a drug which I have a lot of and which covers a wide variety of bacteria. I hope it might provide some relief.

I lie in bed. My airways burn. My PICC line hurts. My head throbs. My pancreas is angry. (Of late, it becomes very sore and makes me quite sick any time antibiotics enter my body.) I fight to go to sleep. I hope in the morning, my body will be in better shape.

"The LORD is close to the brokenhearted and saves those who are crushed in spirit. The righteous person may have many troubles, but the LORD delivers him from them all." (Psalm 34:18-19)

Pain meds!? It's 2020. No one gives pain meds.

In September, I had an upper endoscopy. The scope did not touch my pancreas, but after the procedure, my pancreas was very angry. I was in a tremendous amount of pain. Although I was given fentanyl, fentanyl only works 15-20 minutes. Then, the pain comes roaring back. Moreover, too much fentanyl makes me really sick.

As I prepare for this procedure, I think up a brilliant plan. I have oral pain meds, but it takes an hour for them to kick in. They last about 3-4 hours. Since I always have my ventilator with me, I tape a pain med along with one Tylenol tablet to the inside pocket of my ventilator bag. When I get out of the procedure, I will ask for water. When the nurse is away, I will grab the pain meds and put them in my mouth. When I get the cup of water, I will carefully swallow the pills. An hour after the procedure, the pain meds will be working. I then I will be able to go home and not be in horrible pain.

On the day of the procedure, it takes about 15 minutes for me to wake up enough from the anesthesia to gain my faculties. I am shaking in pain. This procedure went into my pancreas. My pancreas is furious! I am given 50 of fentanyl. When I stop shaking, I ask for water. I quickly find my pain pill and Tylenol tablet and pop them into my mouth. When the nurse returns, I have a little bit of difficulty swallowing the pills because my mouth is dry, and the tablets are stuck on my tongue. I finally am able to take a sip of water and turn my head as if to look at my vitals monitor. The upward motion allows the pills to break free from my tongue and glide down my throat. I look at the clock. It is 9:27 a.m. It will take an hour for the pills to kick in.

The nurse gives me 50 more of fentanyl. The nurse then asks if anything helps with pain. I tell him hydrocodone works well. My doctor appears at this moment in my cubicle. The nurse asks the doctor if I can have something longer lasting for my pain such as hydrocodone. I am asked which one I take. I say 5 mg helps with the pain. The nurse then says, "What about 10 mg?" I say 10 mg will get rid of the pain, but 5 mg will help with the pain. The doctor orders 10 mg of hydrocodone for the pain.

I am absolutely dumb-founded at this moment. I had just taken 5 mg of hydrocodone with one Tylenol tablet. I thought this was a brilliant plan. No one ever offers me anything long lasting. No one ever thinks to order something which will help more than 15-20 minutes. I am given more fentanyl. Around 10:30 a.m., I am given the 10 mg of hydrocodone. I do not take the pill as I have already taken 5 mg of hydrocodone, and it is starting to take effect. When the nurse is not looking, I slip the pill into my ventilator bag.

With the hydrocodone and fentanyl, my pain is down to a 3 on the pain score. My nurse notes the improvement in my pain. He informs the doctor my pain is doing much better. Around 11:30 a.m., I am transferred from the post-anesthesia unit to day surgery. As I am changing into my street clothes, I ask my nurse if the doctor had given me anything for pain when I am at home. She says no, but she will ask my doctor for something. To my shock, the nurse informs me a few minutes later that the doctor sent a prescription for pain meds to my pharmacy.

During the six hour ride home, I take another 5 mg of hydrocodone. It feels as though my stomach is trying to push my intestines out through my rectum. The pain is awful. I normally would not take that much pain medicine, but I think to myself, "Well, now the 10 mg hydrocodone I got at the hospital will replace the two 5 mg tablets I took from my own meager pain medicine supply. Nothing was lost during this visit."

When I arrive home, my mom goes to the pharmacy to get the pain meds. I am blown away when the prescription is for 10 mg of hydrocodone. Pain pills are very precious. I have constantly been left in the past screaming for hours on end because no one will give me pain meds, even at the hospital. These precious pills are not to be taken unless everything else fails. Now, I will have some pills to help get me through this time while my pancreas is inflamed. I will not have to go to the emergency department if the pain gets severe. What an incredible blessing!

The Procedure needs to be done at the hospital

Recently, I had a procedure done to open up my common bile duct and to open up and drain my pancreatic duct. I have had similar procedures like this before. Since I am on a ventilator, the procedure must be done at the hospital. I am a high risk procedure, and the hospital will not allow me to have anesthesia at an outpatient facility.

I am very thankful two years ago, the person I was talking to the day before the procedure knew this hospital rule and had the procedure changed from being at the outpatient facility to the hospital. In September, I had an upper endoscopy, which required anesthesia. I informed the doctor's office the procedure had to be done at the hospital. They did not change the location. The day before the procedure, it was a frantic scramble to get everything changed over to the hospital when the outpatient facility was informed by the hospital they could not do my procedure at their location.

When scheduling my recent procedure, the doctor knew from the fiasco in September, the procedure had to be done at the hospital. He scheduled the procedure when he would be on-call in the hospital. When the clinic called to set up the details of the procedure, I was very clear the procedure had to be done at the hospital. The receptionist call the hospital and clarified all the details.

The day before the procedure, I receive the standard call, asking me about the medications I take and giving me instructions for the next day. At the end of the call, the nurse says my procedure is at the same place where I had it the last time. I am go to the same registration desk. Before the woman hangs up, I quickly clarify, "You mean, I am to go to the hospital?" The nurse pauses. She looks at my chart. She then says, "Well, I see last time you were at the hospital. But this time, the procedure is at the outpatient center." 

 I tell the woman, no, my procedure must be done at the hospital. I have a ventilator. It is the hospital's policy. She tells me it is up to the nurse anesthesiologist. (I do not say anything, but it does not matter what the nurse anesthesiologist says. The hospital supersedes everyone. THE PROCEDURE MUST BE DONE AT THE HOSPITAL!) I tell the nurse I had arranged everything with my doctor's office for the procedure to be done at the hospital. The nurse says she will message my doctor's office. If I do not hear anything, I am to go to the hospital.

I try to be at ease, but the day is drawing to a close. How will I know if the procedure is changed if no one calls me? I know doctors, nurses and doctor's offices are busy. It is easy for someone to forget to call or to not realize they are supposed to call a patient. I pass the night praying the procedure is changed over to the hospital.

The next morning, I am very tired. I slept little. It is early. There is construction. Streets are closed. I get confused. My mom drops me off at the wrong building. It is dark. There are people and cars everywhere. It is only after my mom pulls away do I see the sign which states this is the wrong hospital. I see a woman directing traffic. I ask her where St. Luke's Hospital is. She points and tells me it is the brown building about a block down on the next street. I quickly make my way to the hospital. Time is ticking. I am running late due to the construction and now needing to get to another building.

I am delighted when I arrive at the registration desk, the woman immediately checks me in. I do not have to wait. I do not have to go to another office. I believe it must be a good sign that the woman finds me in the computer system. I am hopeful the procedure has been changed from the outpatient center to the hospital. Since I had been there in September, the registration process is quick. Soon, I have a wristband and am off to day surgery.

I arrive at day surgery. I tell the woman my name. She then tells me to follow the green diamonds to the day surgery unit. Once I arrive inside the day surgery unit, I glance at the procedure board. I nearly leap for joy when I see at 8 a.m. there is my doctor's name followed by my initials. Oh, happy day! Everything is set to go.

Shortly before 8 a.m., my doctor arrives in my room. He asks me, "Why was this procedure scheduled at the outpatient center? I scheduled this procedure to be done during my week while I am on-call in the hospital." I shrug my shoulders and tell him I had everything set up with his office to have the procedure done at the hospital. I was informed yesterday it was changed to the outpatient center. I went on to say that I told the person yesterday the procedure had to be done at the hospital. The doctor shakes his head. With exasperation, the physician says, "Scheduling. They must have changed the procedure location." I try to cheer up the doctor and tell him at least we both knew where my procedure was to take place. He does not say anything, but I can sense the procedure location must have caused him some stress and headache.

I am thankful and grateful everything worked out. However, I feel really bad for the doctor. He is such a sweet, nice man. We both did everything to make sure the procedure was done at the hospital, but someone changed it. At least, in the end, it was changed back to the hospital. At 8 a.m., the nurse and doctor escort me up to the endoscopy unit. It's procedure time!

When you might drown because you can't turn around (Part 2)

When I am nearing the city, I have two ways in which I can go. I can continue on the interstate or take a highway which skirts the southern edge of the city. The interstate has some low areas which are prone to flooding. The highway is mostly elevated and only dives down to street level as it enters the city. Although it is only lightly raining, I opt to exit the interstate and take the highway.

As I am approaching the area where the highway turns back returns back to street level, I feel the need to exit. I tell myself, "No, that's silly. There is no reason to get off the highway." As I come over a hill, I can see before me, the traffic is stopped. There are tail lights as far as I can see. I immediately know I need to get in the right lane and take the exit. (I instantly know God had given me the warning to take this exit.)

Once on the frontage road, traffic seems odd. The left lane is long with traffic. There are a couple cars and two semi trucks in front of me. The big rig decides to turn right, jumping a curb to get in to a parking lot. The back of the parking lot leads into an adjacent side street. I move up in line. I then see a car from the left lane put his blinker on, and he too hops the curb to get into the parking lot. I can see the traffic light has turned green. No one moves. I wait and wait. The traffic light cycles through and again turns green. No one moves. I have a sinking feeling there is something blocking traffic.

I want to get into the parking lot next to me, but I do not want to damage the car. I can see about a half block behind me, there is an entrance to the parking lot. I look in my rear view, and to my shock, no one is behind me. Everyone is in the left lane! I quickly put the car in reverse and press the accelerator. I pray no one decides to change lanes and hits me while I do some freestyle driving. I breathe a sigh of relief when I reach the parking lot entrance. I put the car in drive and quickly make my way across the lot. When I reach the adjacent road, I take a left. As I approach the cross street, I look to my left. I can see a school bus is stalled, and cars are all over the place. I cannot discern if there is water on the roadway. There does not seem to be an accident, but no one is moving. I take a right on the cross street. I have no idea where I am, but I use my old logic, "All streets go somewhere." I pray this road leads me to a place I know.

Very soon, the road dead ends. I look on my GPS, and I nearly leap with joy! Oh, I know this road! This is road will take me to my hotel! I take a left. The roadway is slightly flooded, but I am able to maneuver through the water without much trouble. As I enter the city, I come to an interstate road which loops around the metro area. I know the road which lies before me is very low. I am concerned the streets may be flooded, or there may be accidents. I decide to hop on the interstate since it is elevated above the city streets. As I enter the interstate, I am shock at how few cars are on the roadway. It is rush hour...but where are the cars!?

Quickly, I am at the exit for my hotel. I cannot believe it! I made it! As I pull into the hotel parking lot, the rain is a little heavier than a drizzle. I am so grateful I will be able to make it into the hotel without getting soaked. As I am waiting to check in, the woman in front of me says her friend is stranded at the airport. The roads are flooded. She does not know how she is going to make the ten mile journey to the hotel. The front desk worker says the roadways to her home are currently flooded. She does not know how she is going to make it home.

After I check in and get to my hotel room, I search the internet for information about the weather. I find a website which has streaming video. They show image after image of flooded streets, interstates and highways. I watch in awe. How was I able to get through all this safely? I know it was nothing more than God leading me. There were several times when I was sure I was going to have an accident, but nothing happened. I thank God over and over again for His protection. I look out my window. To the south, the clouds are breaking up. The sun is setting, producing one of the most majestic sunsets I have ever seen. I know somewhere there is a rainbow.

"I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Whenever I bring clouds over the earth, and the rainbow appears, I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth" (Genesis 9:13-16).

Link to Part One click here)

When you might drown because you can't turn around (Part One)

As I sit in Bible study, my dear friend, Vicki, tells me her husband is staying home this week from traveling. I ask her why. She tells me there is a storm slated to hit several hundred miles from us. "It just wouldn't be safe for him to be traveling through all that rain." I am surprised to hear about this storm as I have a trip coming up in a few days to go to my doctor at the large medical center. It seems as though the medical center will be in the storm’s path.

When I arrive home from Bible study, I look at the weather report. Yes, the storm is supposed to hit on Wednesday, but it should be clearing out by Thursday afternoon. I am excited. "Oh good! I need to travel on Thursday to make my Friday morning appointment. Praise be to God, the storm should be gone by the time I arrive in the late afternoon." I check the weather report again on Wednesday evening. Again, the news has not changed. The storm is moving as expected. There should only be isolated showers on Thursday afternoon.

Thursday morning, I pack up the car. I am happy to see the sun is brightly shining. It is going to be a good day to drive. When I am two hours from the medical center, I notice the clouds are thickening up. I think to myself, "This is odd. I wonder why there are all these clouds since the storm is supposed to be clearing out of the area." I continue to drive; the cloud density increases.

About an hour from the medical center, the skies in front of me are BLACK!!! The western, eastern and northern skies are thick darkness. My heart sinks. I see a bright flash of lightning straight ahead of me. I know I have made a grave mistake. I should have stayed home. The storm has not left. It is roaring away. I could turn around and go home, but I an only an hour away from my destination. I am extremely tired from driving. I long to go to sleep. I do not have the energy to drive five hours back home. Besides, maybe the weather is not as bad as it looks. Maybe the weather would hold until I am closer to my hotel. If I was not supposed to have come on this trip, I am sure God would have put some stumbling blocks in my way. He will take care of me.

A few minutes after thinking these thoughts, rain begins to fall. It changes very quickly from a light sprinkle into a downpour. I want to cry. For the next 25 miles, there is road construction. The highway turns from an interstate into a two lane make-shift road which haphazardly meanders along a frontage road and over badly torn up old freeway lanes. The next 25 miles is extremely dangerous to drive during ideal road conditions. Add the slightest amount of water and the roadway pools with water and floods. I want to pull over or stop, but there is no where to go. The construction has shut down most of the exits. Concrete barriers keep the traffic moving in two narrow lanes. Not knowing what else to do, I continue driving into the darkness.

As I drive and the rain impedes my ability to see the roadway, I decide to implore my blizzard driving skills. I find a semi truck with bright tail lights and follow him. When he breaks, I break. When he swerves, I swerve. I follow the semi, keeping a small stopping distance between the two of us. I pray the man driving the big rig can see the freeway. I cannot see anything but sheets of rain flowing down my windshield and the tail lights in front of me.

Suddenly, the semi slams on his breaks. I break as hard as I can without hydroplaning. A foot of water covers the roadway. The semi manages to make it safely through. I step on the gas and pray I can make it through the water. As I am attempting to cross, a large pickup truck speeds pass me in the next lane next to me through the interstate lake. Water flies up over my car. I cannot see! I hang on to the steering wheel with all my might as the impact of the water against my car threatens to pulls me off the roadway and into the flooded ditch. I pray, "Jesus, help me!" Somehow, I stay on the road and make it through the water.

Several more times, 6-12 inches of water cover the roadway. Every time, I slow up to allow the semi to safely pass. I then step on the accelerator hard, hoping I will not get stuck in the water. I keep praying for God to get me through this weather fiasco without an accident or injury. As I am nearing the end of the construction zone, about two feet of water covers the highway. The flooding is hidden. The road dips down. I can see the semi in front of me panic as he hits the flooded roadway. I am not sure my low-riding vehicle can clear this flooded area. I follow the semi closely, allowing his vehicle to push the water out of the way and into the ditch. The wake which his vehicle makes allows me to safely pass through the water.

When I think I cannot endure another moment more of driving in this incredibly dangerous construction zone, the roadway veers back on to the regular freeway route. The lanes widen and expand to three lanes. Although there is still construction, the freeway is now riding high above the flooded frontage roads. As I continue to drive, the rain lessens. I am rejoicing to have made it through that nightmare.

Link to Part Two click here)

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.

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!)