Thursday, June 27, 2019

This won’t hurt...why are you crying? (Part Two)

The physician begins the procedure. He tells me he is going to inject lidocaine into my arm to numb the area in which he will be working. He tells me it is going to feel like a bee sting, but then the procedure will be painless. (A side note: I do not know why doctors and nurses always tell me shots feel like bee stings. I have been stung by a bee. Bee stings are shallow. There is a burst of pain, but then it fades into a burning, aching pain. If shots are to be liken to a bee sting, I would say, "Look out! This bee has a two foot stinger!" And that's how shots feel to me. The pain radiates deep within my muscle. The sharp burst of pain lingers for a long time. Then, it eventually begins to feel like a burning, aching pain.)

The doctor injects lidocaine into my arm. I nearly jump off the table! He gives me a couple more shots, and I am shaking uncontrollably. The pain is so intense! The lidocaine does nothing to deaden my nerve endings. Tears stream down my face. I am crying, and mucus is building up in my airways. I do not have the strength to cough up the mucus as I am using nearly all my energy to breathe while lying flat. The doctor stops and asks if I want to continue. I nod my head "yes", and my message is relayed to the doctor on the other side of the sterile sheet.

(Side note: I have had issues with lidocaine being squirted down my throat and trachea in the past. Doctors often do this before they perform a bronchoscopy. I have had far too many bronchoscopies done that now whenever my trachea or throat are exposed to lidocaine, my airways swell up, and I start coughing uncontrollably. I am fairly confident that this is an allergic reaction to the lidocaine, but I do not dare list this as an allergen. Doctors will not believe I am allergic to lidocaine. Furthermore, there are few alternatives to lidocaine...and the alternatives are often far worse than my body's reaction to the lidocaine. I have never had issues with lidocaine being used during a PICC line procedure, but now, it seems, my body no longer tolerates this medicine in any form.)

My arm screams in pain from the lidocaine. I try and try to steady my breathing. The physician begins the procedure. I can feel him working on my arm. The doctor gives me another one or two shots of lidocaine. Finally, for a brief time, an area of my arm goes numb.

The intense pain from the lidocaine has caused a large amount of adrenaline to course through my veins. I am fighting and fighting to steady my body, calm my breathing and lower my heart rate. The doctor continues to work on my arm. I can feel the lidocaine wearing off. My arm is slowly gaining feeling. Little by little, my arm feels as though someone has stabbed it multiple times with a knife.

I can feel when the physician is done inserting the PICC line. Now, the lidocaine has completely worn off. As the doctor secures the PICC line to my arm using tape, I begin crying again. Tears stream down my cheeks. I do not have the energy to make audible sounds. Instead, mucus accumulates in my airways, threatening to block my ability to breathe. The doctor finishes the procedures and leaves the room.

As soon as I am told I can move, I bolt upright to a sitting position, gasping and shaking. My head is spinning from an accumulation of too much carbon dioxide. My body is shaking uncontrollably from the intense pain radiating from the PICC line insertion point. Tears cascade down my face. I cough and cough as I attempt to clear my airways of a massive accumulation of mucus.

The radiology team is shocked at my sorry state. A nurse asks, "What's wrong?" Another nurse replies, "She's crying. I think she is in pain." With weak respiratory muscles, I attempt to speak over my coughing spells. "I...am...in...PAIN!!!" Sobs overwhelm my vocal cords. "Where is the doctor?" a technician asks. "He is in the reading room," another radiology staff member replies. "We need to get him ASAP!"

The physician is summoned. The doctor is flabbergasted that I am in so much pain. The physician asks if I have any allergies to pain medicine. "Yes. Morphine and Dilaudid." The radiology nurse tells the doctor, "Toradol would work. That is in a different class of drugs." I know what the nurse is thinking. Morphine and Dilaudid are opioids. Toradol is a non-steroidal anti-inflammatory drug, i.e., it is glorified Advil. I want to scream, "Please don't give me Toradol! I am in sooooo MUCH PAIN!!! Please give me fentanyl! Please, fentanyl!" I remain silent and plead with my eyes for the doctor to give me fentanyl. The doctor decides to give me 50 of fentanyl. The nurse scurries away to commandeer some fentanyl. The doctor returns back to the reading room.

The rest of the radiology staff remain by my side. No one does much of anything because I am shaking uncontrollably, and my heart rate monitor is alarming because my heart rate is in the 140's. The nurse returns with the fentanyl. He asks if I want the fentanyl now or after I transfer to a bed to be taken back to the recovery area. I mumble, "Medicine." The nurse infuses the fentanyl into my newly placed PICC line. I can feel the drug race through my body. Within a minute, I feel the sedative effects of the fentanyl attempt to drag my body off to sleep, but the pain is too severe. My body fights the fentanyl. I continue to fight back the tears, my heart continues to race, I continue to gasp for breath and my body continues shaking.


(Link to Part Three, click here)




Tuesday, June 25, 2019

This won’t hurt...why are you crying? (Part One)

This long drawn out battle with a pseudomonas infection might perhaps be coming to an end, but first it is not without some grand adventures.

After struggling to get an appointment with interventional radiology for nearly a week, I finally had everything setup to get my peripherally inserted central catheter (PICC) line. I was a bit nervous about the procedure. My last PICC line was quite painful. Scar tissue has built up in my veins, making my veins very narrow and hard to access. Usually my PICC lines have been placed while hospitalized. A very specialized nurse would show up at my bedside, create a sterile work field and in 20-30 minutes, a PICC line was inserted. This time, I was having the procedure done outpatient. This should be a better experience, right? Instead of having one person work in the tiny confines of an ICU room, this procedure was going to be done in a spacious radiology room with multiple people assisting a physician. Everything should be sunshine and lollipops. I wish that were true...and I wish I would have been given a lollipop for enduring this procedure. It might have helped ease some of the pain.

When the technician is preparing me for the procedure, she uses ultrasound to scan my arm for viable veins to insert the PICC line. She scans and scans. She continually askes her colleague to adjust the depth on the ultrasound. Around and around my upper left arm she goes. “Well, that is odd. I can only find one vein. I am going to get the doctor and ask if we can use this vein. It’s the brachial vein, and we don’t usually use this vein.”

The doctor is summoned. Around and around my left upper arm he goes. “Well, this would be a beautiful vein to use, but unfortunately it’s the brachial artery. Look at how beautiful it is. And what a perfect position it is in too.” He continues searching my arm, but the only vein he can find is the brachial vein. He finally gives up and states he will just use the brachial vein for the PICC line.

The doctor leaves the room. The radiology teams suits up into sterile gowns, gloves and masks. I am strapped down to the radiology table and suddenly feel as though I am going to endure some horrible event. A large sheet is spread over my entire body and covers my head. The right upper corner of the sheet is tented to allow some light to enter my visual field. My left arm is fixed on a board which extends at a 90 degree angle away from my body. A small hole is cut in the sheet to expose my left upper arm.

My left arm is prepped for the procedure. It is drenched in a solution which sterilizes my arm. Between the chemicals in the solution and the freezing cold temperature of the radiology room, I feel my body temperature plummet. I am very grateful at that moment that my exhalation valve on my ventilator is underneath the sheet and is resting on my chest. The heater on my ventilator cranks out warm air around 100 degrees Fahrenheit. With my right hand, I clutch tightly my exhalation valve, trying to shield the warm air from escaping into the room.

As I am lying on the radiology table, I am struggling to breathe. I have my cuff on my tracheostomy tube deflated so I can speak. I cannot breathe on my own while lying flat, and now that I have my cuff deflated, which breaks the circuit in my ventilator and thus only provides about one third the support needed to fill my lungs with air, I am using a large amount of energy to breathe. I desperately want to inflate my cuff, but I know if I do so, I will not be able to speak. If something happens during the procedure, I will need both hands to use a syringe to deflate my cuff. Since my left arm is out of commission, there is no way I can inflate/deflate my cuff during the procedure. I decide it is better to keep the cuff deflated and pray the procedure goes quickly—before my body uses up too much energy and/or before my carbon dioxide levels go too high and cause me to pass out.

After all the preparation is complete, the physician enters the room. He gowns up and gets ready for the procedure. He walks to the side of the radiology table and uncovers the instruments needed for inserting the PICC line. The procedure begins.


(Link to Part Two, click here)




Thursday, June 20, 2019

Delays--always God ordained

Several weeks ago, I saw my infectious disease doctor. A few days prior to the appointment, I had been released from the hospital. Despite being septic and having pneumonia, I was discharged after having only received five and a half days of antibiotics. My infectious disease doctor explained even with a minor infection, the standard protocol was a seven day course of antibiotics. With my complicated pseudomonas infection, I needed at least a fourteen day course. The only solution was for me to get a PICC line and be started home IV antibiotics.

The doctor wanted me to get the PICC line as soon as possible. I, however, wanted to desperately go home. I had been at the medical center, which is located nearly 400 miles away from my home, for ten days. Since it was a Friday, I would have to wait until Monday to get my PICC line inserted. I did not want to spend anymore time away from home. I explained to the doctor it would take a week for my antibiotics to be approved through my insurance company. So, there was no advantage to staying the weekend and getting the line on Monday since the antibiotics would not be shipped out until later in the week. I asked if I could come back on Wednesday or Thursday of the following week for the PICC line. The physician agreed. He said he would follow up with me in two weeks.

The request for my PICC line was submitted to interventional radiology. I waited and waited for the department to call me and schedule an appointment. I called the facility and was told my PICC line request was being reviewed. I had to wait a few more days before the procedure was approved. Now, it was late in the week, and most of the appointments were scheduling into the following week. Since it takes a day to drive to the facility, having an appointment to get my PICC line placed on Monday, Tuesday or Wednesday seemed like a waste of time and energy. We were already committed to driving to the medical facility on Thursday to be able to attend my Friday morning appointment with my infectious disease doctor. So, placing the PICC line on Monday meant we would drive to the medical facility on Sunday, have the procedure done on Monday, drive home Monday, rest Tuesday and Wednesday and drive back Thursday. Having a Tuesday PICC line placement meant driving to the medical facility on Monday, having the procedure done on Tuesday, driving home on Tuesday, resting Wednesday and driving back on Thursday, etc. I decided the best thing to do was to schedule a late afternoon PICC line placement on Thursday. This way, we could leave early Thursday morning for the medical center, have the PICC line placed, stay overnight on Thursday, attend my Friday morning doctor's appointment and then drive home.

In hindsight, having a Thursday PICC line placement was an excellent idea. The infusion company processed my IV antibiotic request; however, they failed to communicate that they did not accept my insurance. After calling my doctor's office and the pharmacy multiple times, finally I was able to find out why I was going to be charged an exorbitant amount of money for my antibiotics--they were not using my insurance to process the claim. So, the Tuesday before my doctor's appointment, I along with my doctor's nurse were trying to find a different infusion pharmacy. We found one which accepted my insurance, and then all the paperwork had to be submitted to the company.

I was able to have my PICC line placed on Thursday and have my doctor's appointment on Friday. Since it had now been over three weeks since the bacteria in my lungs was cultured, the doctor ordered another sputum sample. I went home and continued to wait for the home infusion company to process my antibiotic request.

On Monday, I was growing very impatient with the infusion pharmacy. Why was this taking so long? I decided to let God handle everything. I continued to wait. On Tuesday, I received a call from my doctor. The bacteria in my lungs was now resistant to the antibiotic he had prescribed. He needed to place me on a different antibiotic. New paperwork was submitted to the infusion pharmacy.

After receiving the physician's call, I was praising God. There was a reason there was a delay to the infusion pharmacy filling my antibiotic prescription--God knew I needed different antibiotics. Without all the delays, I would have been using an antibiotic in which my bacteria are resistant. This could have caused further complications such as a major flare-up of the bacteria. (This has happened in the past when I was placed on a drug in which my pseudomonas infection was resistant. The infection quickly spread and caused additional health issues.)

So, now I am waiting (again) for the home infusion pharmacy to process the new antibiotic request. Hopefully I will receive the antibiotic soon. The infection is slowly spreading in my lungs, causing more mucus production and an increase in coughing spells. I desperately want to be rid of this infection. Praying this new antibiotic will finally kill and eradicate both the pseudomonas and serratia bacteria in my respiratory tract.

Tuesday, June 18, 2019

Calling for an appointment

Two weeks have passed since I last saw my pulmonologist. I usually schedule my next appointment immediately after I see my pulmonologist. However, when I saw my doctor, she told me I needed to go to the emergency department for medical care. So, I left the clinic without scheduling my next appointment.

I decided I should call the medical center to schedule an appointment. My pulmonologist has a busy schedule; her next available appointment is often 10-12 weeks out. At my last appointment, I was not given a timeframe to follow-up, but usually I am told to make another appointment in 2-3 months.

When the receptionist answers the phone, I ask to schedule an appointment to see my pulmonologist.

Receptionist: You just saw the doctor two weeks ago. Why do you need to make another appointment? I am not sure the doctor wants to see you back so soon.

Me: I need to make a follow-up appointment. I am not sure when my pulmonologist next wants to see me, but I know her schedule books up quickly. She usually wants to see me in 2-3 months.

Receptionist: I should contact your doctor’s nurse and find out when you should next have your appointment.

Me: When is the doctor’s next appointment?

Receptionist: Her next appointment is 10 weeks from now. So, you would be seeing the doctor three months after your last appointment.

Me: Great! Let’s make the appointment. That’s probably when my physician wants to see me.

Receptionist: Well, I’ll make the appointment, but I am going to message your doctor’s nurse to make sure you are to be seen so soon.

I thank the receptionist and hang up the phone. I abruptly start laughing. I am confused by the conversation. I am not sure when the receptionist wanted me to call to make a follow-up appointment. Scheduling appointments three months apart seems like an acceptable amount of time between doctor visits. It is not as if I can call anytime, and magically there will be an appointment waiting just for me. I also did not tell the receptionist that I had been in the hospital, and the reason for the appointment was to follow-up after my hospitalization.

(I know some of you might be wondering why I did not pull this ace out of my hat to perhaps expedite getting an appointment. From past experience, I have told the appointment receptionist this, and suddenly it is as if the world is going to end if I do not get an immediate appointment. The receptionist often goes to great lengths to get me in to see my pulmonologist in the next few weeks. At the moment, I do not need such an urgent follow-up. I am seeing my infectious disease doctor and am giving him time to attempt to get me on antibiotics and hopefully kick this pseudomonas infection to the moon. If things can’t be sorted out in the next 10 weeks, then perhaps my pulmonologist can help at my next appointment.)

For what it is worth, I think I will always schedule my follow-up appointment while at the clinic. Even if I am really sick and am on my way to the emergency department, I will take a few minutes to get everything set up for my next doctor’s visit.

Tuesday, June 11, 2019

Broadway—A little bit more inclusive

As I watched the Tony Awards on Sunday night, I was overwhelmed with excitement to see a wonderful young woman in a wheelchair captivate the audience as she sang a song from the musical “Oklahoma”. As the musical number continued, I smiled as I saw the set was designed to allow the actress in the wheelchair to move through the scene.

When the award for best female in a featured role in a musical was announced, Ali Stroker, the woman in the wheelchair, won! I was filled with much delight. I hope Ms. Stroker’s win signals a change in Broadway and theater productions.

I have frequented the theater in the past and know there are very few roles which require a person to be in a wheelchair. The wheelchair roles are often tiny parts which come and go in the blink of an eye. Moreover, being cast in a regular role, being in a wheelchair, is next to impossible. Many sets have uneven surfaces and stairs. Even the most athletic actors often have to be extremely careful on the stage as trap doors and narrow spaces make the theater an obstacle course. Additionally, most theaters are old and do not have dressing rooms on the same level as the stage. An actor often has to hike up and down stairs during the production in order to change costumes.

I used to be in theater productions on a regular basis. When my health declined requiring me I to use a wheelchair, I was devastated that people would not accommodate my needs. If the only way to access the stage was via stairs, I was told I could not participate. Management would often refuse to spend any extra money to make the stage wheelchair accessible. Additionally, I was also told being in a wheelchair on stage was a liability issue. The production had to take out more insurance if I was to appear on stage. Henceforth, it was much cheaper (and safer in the eyes of the director) for me to remain offstage and watch from the audience. I have tried to not let these instances scar me, but I am often left wondering why there is still so much discrimination in this world.

When I saw Ali Stroker win the Tony Award, I rejoiced that at least one corner of this world is attempting to allow ALL people to live out their dreams. Broadway has started making accommodations to create theaters which are more accessible to people with disabilities. Ms. Stroker is the first person in a wheelchair to ever appear on Broadway, and now she is also the first person in a wheelchair to ever win a Tony Award. She has worked for most of her life to get where she is. I pray that all her hard work will continue to pave the way for more and more folks with physical limitations to capture their dreams and turn Broadway into a true mosaic of American culture.

Thursday, June 6, 2019

PICC line heartbreak

Ever since I have gotten my most recent peripherally inserted central catheter (PICC line), I have had intense pain and discomfort. The PICC line was hard to insert because previous PICC lines have scarred my left arm veins. Although not directly told this, the technical who inserted the PICC line hinted that this would probably be the last PICC line in my left arm. Any future lines would most likely have to be placed in my right arm.

I have been nursing my arm along, trying to do everything to make this PICC line last. I thought everything was going fine until about a week ago. I noticed there seemed to be yellow "gunk" accumulating under my PICC line dressing. I was not immediately alarmed because this does happen. However, I was concerned that the clear plastic patch which covered the PICC line insertion point into my vein was cloudy. I could no longer see a small section of the catheter. The site has always been painful, but now it started burning. My shoulder also started hurting. I ignored the symptoms. Finally, I couldn't sleep the last two nights because as soon as I fell asleep, I woke up feeling as though I was being eaten alive by bugs. My PICC line insertion site burned and itched, and the rest of my body was breaking out in hives. I took Benadryl, but it did not alleviate the symptoms. Eventually, the sedative effects from the Benadryl overwhelmed my body with fatigue, and I fell asleep.

Today, I decided I should probably go to the emergency department (ED) to get my PICC line dressing changed. I also thought I should have my PICC line looked at. While the dressing was still on my arm, the doctor looked at my PICC line. He noted the drainage, but he did not think it was anything to be concerned about. However, he strongly suggested the PICC line be pulled just in case there was an infection. I pleaded with the doctor to leave the PICC line in. I would follow up with my doctor to discuss the next course of action. The ED physician decided he was ok with my plan.

My nurse came into my ED room with a PICC line dressing kit. As he was pulling off my old dressing, the ED doctor walked into the room. As soon as all the tape was off my PICC line, the doctor's face blanched. My PICC line insertion site was very red and was oozing a highly toxic looking yellow pus. The doctor at once said my PICC line was infected. The nurse cultured the pus. He then removed the PICC line and cultured the PICC line as well. The ED doctor told me I needed to be admitted to the hospital for antibiotics and to wait for the PICC line cultures to come back. I begged and begged the physician to let me go home. I have been in the hospital A LOT this spring! I could not endure another moment in another hospital room. I told the doctor if I had to wait for the cultures, couldn't I wait for them at home? Couldn't he send me home on oral antibiotics and when the cultures came back, make a more definitive treatment plan based on the culture results? The doctor said he could, but he did not recommend it. After pleading and pleading with the doctor, he let me go home on oral antibiotics.

As I sit here, writing this, I am devastated. I still have two bacteria in my respiratory tract. Now, I also have an infection at my PICC line insertion site, which might also have spread to the rest of my body. The only way to treat the respiratory tract infection is with IV antibiotics. IV antibiotics require a central line such as a PICC line. Now, I don't have a line. Now, I might have another infection, which may also require IV antibiotics. I am heart-broken. When will these infections stop? When will God let me "just" have Mito? Why must I endure so many hospitalizations, tests and other procedures? I am exhausted. Tears stream down my face. The only thing I can do is pray...pray that some day soon, God will heal me from these infections.

Tuesday, June 4, 2019

Patio adventures

Our backyard patio is warm, inviting and a lovely oasis from the hustle and bustle of the world. Literally, one can feel as though he has left the confines of the world and slipped into a wildlife sanctuary. Birds from all around the world love to fly in the heavens above. Butterflies, dragonflies and damselflies litter the air and love to hide among the wildflowers. I love to slip into this incredible slice of God's paradise. However, I am always apprehensive.

Many, many months ago, as I was opening the patio door to exit the house, a rattlesnake fell on my head. I subsequently killed the snake. Since that time, I have seen a few other snakes (thankfully none of them have been rattlers). So, one can imagine, I always am quite cautious when moving around on the patio.

The other day, as I was sitting in my bed reading the Bible, I heard a loud crash in the kitchen. I immediately went to the kitchen window and saw some feathers on the patio tiles. I knew what had happened. A bird flew into the kitchen window. This has happened many times before. The bird is a bit dazed and stunned, but eventually, it regains consciousness and flies away. I figured this is what happened to this bird. I did not see it any where. I assumed it must have flown away.

Later in the day, I venture out to the patio. I meander over to where the bird hit the window. To my horror, there is a mourning dove lying dead on the patio floor. I am too distressed to do anything more than hurriedly scurry away into the house.

The following night, I look out onto the patio and see a tail of an animal. I move closer to the patio door, and there is an opossum! My mom has some tomato plants on the patio. I watch as the opossum wanders over to one of the plants and starts drinking water from a water pan which is underneath one of the plants. I turn on the patio lights and pound on the window trying to scare the critter away. It leisurely reacts to the commotion and looks at me. It then slowly turns away from me and begins licking up some more water. Not knowing what else to do, I turn off the lights and leave the opossum alone.

The next day, I muster up enough courage to again explore the patio. I look for the dead dove and tell myself I will have the wits about me to take a shovel and throw the bird into an adjacent field. To my shock, the bird is gone! In the area where the dead avian once was, there are now two inch long brightly colored orange feathers with black and white stripes. Something came and made a meal out of the dove! As I travel around the patio, I see a dry owl pellet. I figure this is what must have eaten the dove. The pellet has the remnants of some of the bones and other indigestible parts of the bird.

A bit of fear and terror course through my veins! This is too much of the wild outdoors for me. I quickly dash inside, shutting the door tightly behind me. I allow the dry stale air of the house calm my nerves. I love our backyard patio, but for now, I think I will enjoy the comforts of being inside, safe and secure from the great outdoors.