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!