Thursday, September 27, 2018

Raindrops falling

As the rain beats down on my window, I find myself wiping my own raindrops from my face. After spending so many days in the hospital fighting off infection after infection, I am exhausted. I know all these trials are from God, but I really wish I could have a few days of vacation.

Recently, several people have told me how inspiring my life is. They are encouraged by my tenacity to keep on fighting through each challenge. I know their words are sincere, but I find little comfort in them. I have no choice. How can one stop fighting? How can one stop living?

I keep on going through each day, wishing, hoping and praying that some day I will be infection free. Some day, I will be free from this PICC line in my arm. Some day, I will no longer have to constantly watch the clock to ensure I infuse my IV antibiotics at just the right time.

Just when I think I am on the verge of uncontrollable sobs, God stretches out His hand. He hears my prayers. He shows great mercy and loving kindness at just the right moment. He wipes away my tears and fills me with abundant love. My heart overflows. I feel tears welling up inside me as gratitude cascades from my soul.

As the rain continues to beat down on the ground outside my window, I allow the steady percussion of the raindrops to whisk me away to dreamland...a place where sunshine and rainbows are never more than a thought away.

Tuesday, September 25, 2018

Dirty window panes

I sit in my hospital bed. I look at the white board. The days on the calendar have slipped by. How many days have I been here? Each day blends into another day. My hair is extremely dirty. It has been two weeks since my last shower. Oh how I wish I were not in a high level care unit. There are no showers in the unit. Who needs to shower when you are critically ill? This girl does!

I am glad I have been extremely sick. I have sleep most of the days. But, every now and again, I have some energy. I look to my left. A window made up of nine rectangular window panes encourages me to look outside the hospital. However, the window panes are caked with years and years of black soot from the city’s pollution. Despite the obstructed view, I yearn to see what’s outside my window. To my amusement, my window looks into a hospital walkway just ten feet away. People are constantly crossing the walkway, going from one medical building to another. Where are these people going? The medical center is quite large. I have no idea where I am in the complex and have no idea what buildings this walkway connects.

I gaze and gaze at the walkway. Mothers pushing strollers with young toddlers playing in the carriage. Folks in white coats hurriedly whisk across my vision. Other medical personnel in scrubs meander slowly as they carefully balance a hot cup of coffee in one hand while texting on their smartphone with the other hand. Families visiting loved ones carry flowers, cards and/or balloons. Tired nurses shuffle along cradling a container of food in their arms. The procession of people seems to never end. Even in the wee hours of the morning, there always is someone crossing the walkway.

I enjoy my people watching hobby. However, storms roll through the area. As the rain falls, condensation collects on the window panes. Now, my view is completely obscured. My heart aches a bit. My connection to the outside world is hindered. I look around my tiny room. There isn’t much to look at. I click open my iPad and read Scripture. (I also pray for the sun to come out. I pray the condensation on my window panes soon evaporates.) Several hours later, the sun returns to the sky. My dirty window panes appear again. Once more, I can peer out my window into the outside world.

Although I lament being in the hospital, I praise God for these black encrusted window panes. I thank God for providing entertainment while I patiently endure another hospitalization.


Thursday, September 20, 2018

Dark foreboding. Do this or else...(Part Five)

Most of my blog posts have a conclusion to them. When I began writing this series, I thought the end of this story would be this: “I spent three days in the hospital. After becoming stabilized, I was discharged home. I am thankful to be alive. I am thankful for God’s guidance.”

Although this is a true statement, the effects of the IVIG have greatly altered my life. When I had an adverse reaction to the IVIG, I was given high doses of steroids and anti-inflammatories. These decreased my immune system and along with IVIG which can also decrease your immune system a bacterial infection (pseudomonas) was given an opportunity to throw a huge party in my lungs now that it was unhindered. The pseudomonas infection lead to a whole host of other complications. I could never have imagined how many times the side effects of IVIG have nearly cost me my life.

(The irony of it all: At the beginning of the story, my neurologist threatened to not be my doctor if I failed to receive the IVIG infusions. Ten hours after being discharged home from having a severe reaction to the IVIG, I became extremely ill when a pseudomonas infection went into full force in my lungs and subsequently invaded my blood stream. I was hospitalized for twelve days, during which time was scheduled my follow-up appointment with my neurologist. I had to call and cancel my neurology consult. When speaking with the physician, I was told the following. “Because you had a bad reaction to the IVIG, I will no longer be your doctor. I don’t know why you had a bad reaction, but you are too complicated of a case for me. Please find a different physician to treat you.” I was left dumbfounded by the clinician’s words. She was going to drop me if I did not get the IVIG, but now that I had a bad reaction to the treatment she demanded I receive, she was going to drop me as a patient anyway. Wow, I did not see that coming!)

It is truly by God’s grace that I continue to live each day. Will I ever be free from my adverse reaction to IVIG? Only God knows. This truly has been a test in obedience, and at the same time, it has been an incredible blessing seeing God’s workings and miracles all around me. I am overwhelmed with gratitude and thankfulness for God’s tremendous love and mercies. However this story is to end, I know God will be with me, holding my hand and leading me in the way I should go.

(Link to Part One click here)



Tuesday, September 18, 2018

Dark foreboding. Do this or else...(Part Four)

Eight and a half hours after first arriving at the hospital, I am wheeled up to the ICU. I am grateful fatigue prevents me from reacting to my surroundings...otherwise I am sure I would have been sobbing and screaming, "No, no!!! Please let me go home!" But, instead, I silently sit on the gurney, holding on to my ventilator as two nurses zip me down hospital hallways.

When I arrive in my ICU cubicle, it is the same old, same old routine--a nursing assistant records my vitals, a respiratory therapist records my ventilator settings, the nurse asks a multitude of questions to register me, etc. I sit in a state of pain and bewilderment. I start asking myself "Why am I here? If this was a "typical" reaction to IVIG, why have I been admitted to the hospital?" I try to still my mind, but I am annoyed that it is once again Friday night (Shabbat), and once again I am in the hospital. I apologize to God for not being able to observe Shabbat. Shabbat is supposed to be a day of rest. How can one rest when stuck in a busy ICU? The internet is too slow to play streaming video, recorded video or even YouTube. How can I observe Shabbat without being able to at least virtually attend a Shabbat service? I am grief-stricken. But soon, a delayed reaction to the IVIG consumes me in pain.

I am gripped in a tight ball of agony. It feels as though I have slammed my head into a brick wall. I cannot move my neck, and my GI tract is exploding in pain. I beg and plead for pain medicines. Slowly over two hours, I am given small doses of narcotics. After several visits from the ICU clinician, he decides the best way to treat my pain is to sedate me into unconsciousness. Normally, I would protest this plan of action. However, it has been an extremely long ordeal, and my mind is overwrought with the events from the day. I welcome anything which will push me into dreamland. A large dose of Ativan is given and IV Precedex is administered. Soon, I am swept off to slumberland.

The next day, a neurologist visits me. He says how concerned he was about my IVIG reaction. He called my symptoms "a severe reaction" and "an anaphylactic reaction". He said I should NEVER have another IVIG infusion done again at an infusion center. But perhaps if there was a strong indication that IVIG would be beneficial, I might be able to try IVIG again with the use of lots of immunosuppressants and being done under very close supervision by a physician. However, even with using all those precautions, he was not sure I should ever have IVIG done as I might have an even worse reaction the second time. (I was amused that this physician's advice was the opposite of the ED doctor's counsel. The ED doctor seemed apathetic toward my reaction and subsequent symptoms. This clinician made it sound as though I was on the brink of death and am lucky to be alive.)

The neurologist went on to say the reason I was admitted to the hospital was to ensure I did not have any additional flare-ups from a delayed reaction to the IVIG. The IVIG will stay in your body for up to several days until your body is able to clear it. It is necessary to keep me in the hospital until he felt I was safe to go home. Upon hearing the doctor's words, I was suddenly very grateful to be in the hospital. After the delayed pain attack the night before, it was calming to know God was keeping me safe by having me admitted to the hospital.

(Link to Part Five click here)



Friday, September 14, 2018

Dark foreboding. Do this or else...(Part Three)

Very slowly, the male nurse makes his way over to the nurse's station. He calls the emergency department (ED) and informs them I will be arriving shortly. After a brief discussion about my symptoms, the nurse hangs up the phone. He summons a couple nurses to help him transport me to the ED. Since the ED is connected via hallways to the infusion center, the nursing team decides to leave me in the recliner, which is on wheels. The team pushes the bulky recliner with my ventilator perched on the recliner's side table. Another nurse pushes my wheelchair ahead of the recliner entourage.

It seems as though it takes ages and ages to make our way to the ED. As we roll through several areas of the medical facility, I see people staring at me. As we pass near one of the main hospital entrances, I yearn to look for my mom. I have a feeling she is in the lobby waiting for me. I then realize my current state of health might greatly alarm her. I cease from peering into the lobby and turn my face away.

When we arrive at the ED, the triage nurse very slowly registers me. He then tells my infusion team to take me around to the back of the triage area. I am deposited in a back area. The male infusion nurse insists my IVIG infusion (although it is turned off for the time being) be left attached. The infusion center nurse instructs the triage nurse that as soon as I am stabilized, the infusion should be resumed. I am in disbelief at the infusion center nurse. "Really!? You want me to have a repeat performance of this frightening ordeal!?" I pray they will not continued IVIG infusion.

The triage nurse takes my vitals. He then says I will have to wait for a room. He abandons me in a back room and returns to his station at the triage desk. I wait and wait. My body is starting to recover from the infusion. My airways are opening up. My tongue is decreasing in size. I am slowly able to articulate words. My head, neck and back still rage in pain. However, the nausea is gradually receding. I wait 25 minutes for a room in the ED. Right before I am taken back, I almost ask to be released. I have been in too many EDs lately. I have been hospitalized too many times. I know if I stay to be seen by a physician, there is a good chance I will be admitted to the hospital. The thought of spending one more moment in the hospital is almost enough for me to flee the ED. However, my symptoms are still too intense. I remain recumbent in the recliner and pray the infusion center was able to contact my mom. Although I am in rough shape, I really need her presence to help calm the fear coursing through my body.

An hour and a half after the start of my IVIG infusion, I am wheeled into an ED room. I am transferred onto a bed and abandoned. I sit in the room shaking and trying to calm my nerves. I am lamenting my decision to be brought back to an ED room. I should have fled when I had a chance. Thankfully, my mom arrives in my ED room a half hour later. I am grieved that I am still tremendously sick from the IVIG, but I am overflowing with gratitude that I now have someone to speak for me and advocate for me. We wait and wait to see the physician.

Two hours and 20 minutes after coming to the ED, a physician is in my room. By this time, most of my symptoms have subsided. I still suffer from an intense headache, and a stiff and painful neck. Most of the other symptoms have decreased in intensity to be only annoyances rather than major burdens. The ED doctor is rather unconcerned about my IVIG reaction. He tells me IVIG reactions are quite common. About 15% of all first-time IVIG recipients experience a reaction. Thankfully, now that I have had a reaction, my second IVIG infusion should go smoothly. I look at this man in his white coat and think, "You cannot tell me that you would recommend me receiving more IVIG? My tongue and airways swelled up. This is a type of anaphylactic reaction. I am fairly confident if you gave more more IVIG, I would have a worse reaction even faster than this one." Although I want to argue with the doctor, I am too tired and too despondent to respond to his remarks.

Blood work is ordered, a CT scan and X-ray are completed. I am given IV fluids and am told my headache will go away because I am dehydrated. I almost laugh out loud. I am not dehydrated. On the way to my ED room, I had to stop off at the ladies' room and deposit over one liter of fluids. Believe me, I am not dehydrated. In fact, the urge to go again is creeping up on me. I am grateful when the nurse asks for a urine sample. "Oh, thank You LORD for the opportunity to use the restroom again."

My ED experience slowly creeps by. With each passing hour, I am feeling better and better. I am grateful when a nurse finally disconnects the IVIG infusion line. I am told I will not be receiving any more IVIG for the day. I breathe a sigh of relief. Four and a half hours after arriving at the ED, a nurse walks into my room. She says she needs to start another IV. I am dumbfounded. I am ready for her to pull out my first IV and discharge me home. I inquire why I need another IV when I am going to be going home very soon. She informs me I am going to be admitted to the hospital. A request has been made for me to be transferred up to the ICU. As soon as a bed is available, I will be moved. Upon hearing these words, tears spring up in my eyes. I think I am going to vomit. A voice screams in my head, "No! NO!!! I was not supposed to be admitted to the hospital. This was not part of the plan. I was just supposed to get pain and anti-nausea meds. Then I was going to go home and sleep in my glorious own bed! Oh, no! NO! I cannot stay another moment in a hospital. I cannot endure another hospitalization. Oh, this has to be a mistake! Oh, this cannot be real." The nurse starts another IV line. She then leaves.

It is growing late in the day. My mom is very tired and very hungry. Knowing it could be many hours before a bed opens up for me in the ICU, she bids me farewell and leaves for home. As I wait and wait for my bed in the ICU, I again think about fleeing the ED. Where would I go? I am 45 minutes away from home. How much would a taxi cost? Is there some place where I could sleep for the night and have my parents pick me up in the morning? As these thoughts race through my head, I decide I am too exhausted and do not have the energy to maneuver my wheelchair along with all my belongings out of the ED. Broken-heartedly, I resign myself to staying in the ED and waiting for my deluxe accommodations in the ICU. Not knowing what else to do, I click open my iPad and start reading God's Word.

(Link to Part Four click here)






Tuesday, September 11, 2018

Dark foreboding. Do this or else...(Part Two)

The nurse inserts the IV catheter into my left wrist. I breathe a sigh of relief when I see a flash of blood squirt out the end of the catheter. "Praise be to God. She got the needle into my vein the first time." The nurse tries to draw out blood she needs for some lab work; however, she cannot get any blood to collect in her test tube. Thankfully, my nurse calls over another nurse, and with her help, she is able to collect the needed blood. (I again send up a praise to God. "Thank You LORD! Thank You for sending the needed knowledge to the second nurse on how to collect blood from my IV." I breathe a sigh of relief.)

The nurse hooks up a small bag of dextrose. She begins infusing the dextrose into my IV line. Next, she spikes the immunoglobulin bottle. She then enters the necessary information into the IV pump. The thick liquid slowly descends the plastic tubing and starts dripping into my wrist. I sit, trying to read the Bible on my iPad, but I know something bad is about to happen.

As the first few minutes of the infusion proceed, I notice my breathing is starting to increase. I think this is odd. I do not feel nervous. Furthermore, I am sitting reclined with my feet up. There should be no reason I should have an increase in my respiratory rate. About ten minutes into the infusion, I start feeling unwell. My arms start to shake. My breathing continues to quicken. The room spins. I am developing a bad headache. My neck becomes very sore and very stiff. The nurse increases the infusion rate. My symptoms immediately intensify.

I urgently tell the nurse I am not feeling well. She then leaves me and goes to a side office. A male nurse exits the office and comes to my side. He asks me about my symptoms. As I am talking with the man, I notice my speech is becoming sluggish. I am having more and more difficulty forming words with my mouth. The male nurse asks if I took Tylenol before the procedure. I said no. He meanders off to a medicine cabinet and retrieves two Tylenol tablets and a cup of water. The nurse returns and tells me to take the Tylenol. "It will help with the symptoms," he informs me. My hands are violently shaking now. I carefully take the medicine and sip a tiny amount of water. I am thankful when the pills and water slide down my throat. The man asks if I need to go to the emergency department (ED). Although my symptoms are intense, I have felt a lot worse many other times in my life. I decline the invitation to the ED.

The nurse insists he cannot discontinue the infusion. Strangely, he utters words to the female nurse which are very similar to what my neurologist said. "She needs the IVIG. It is essential for her treatment of her condition. She needs to get the entire infusion." The male nurse walks over to my IV pump and slows down the infusion speed. My health continues to deteriorate.

By the 15th minute of the infusion, I am violently shaking. Despite having a trach and using invasive ventilation, I am struggling to breathe. I am overcome with uncontrollable coughing fits. My tongue feels as though it cannot fit in my mouth. My thinking is extremely cloudy. The only thought running through my mind is, "Please stop the infusion!!!" As much as I want to scream this out loud, I cannot form the words in my mouth. The pain in my head is exploding. The overhead lights send excruciating pain throughout my head. My neck is extremely stiff, and pain radiates down my spine. I am tremendously nauseas. I feel as though my entire GI tract is trying to force its way up my esophagus. I am drenched in sweat. It feels as though I am sitting in the midst of a hot oven; however, my hands and feet are ice cold.

The male nurse asks me about my symptoms. I try and try to form words in my mouth, but between my swollen tongue and the disconnect between my brain and mouth, it takes about a minute for me to choke out "yes" or "no" responses. I wish I could just nod my head. However, the stiffness and pain in my neck make it impossible to move. The nurse asks again if I want to go to the ED. This time I say yes. I know the IVIG must be stopped immediately. I know my body cannot handle any more of this toxin leaking into my vein. The only way I believe this nurse will stop the infusion is if I go to the ED. Using all my strength, I slur out, "Yes! ER!" The nurse understands my wishes and reluctantly stops the infusion. I look at the clock. Eighteen minutes have elapsed since beginning the infusion. Eighteen precious minutes ago what a different life I was living.

(Link to Part Three click here)



Thursday, September 6, 2018

Dark foreboding. Do this or else...(Part One)

After searching and searching for a neurologist, it seems God has placed in my life an amazing physician. She is kind, sincere and seems eager to help. She sends me to a distant land to get an additional neurology consult by an “expert” clinician. When the very knowledgeable doctor sends me back to my neurologist with no answers, my physician is very heart broken.

At my appointment, my neurologist tells me she has one last treatment option for me—intravenous immunoglobulin (IVIG). She tells me this is the “Hail Mary” and is essential for the treatment of my condition. She says time is running out. I don’t have any other options left. I listen to the doctor’s words, but I disagree with her. I do not believe IVIG will be of any benefit to me. In fact, I suspect I most likely will have an adverse reaction to IVIG. I react to animal protein, and IVIG is antibody protein collected from thousands of donors. Protein from other people...that seems like something my body will reject.

Despite my foreboding, I set up appointments for the five days needed for the infusions. I pray and pray to God for guidance. I cannot dismiss the darkness which looms over this procedure. I cancel my IVIG appointments. On the day I am to have a follow-up appointment with my neurologist, I receive a call from her office. They are calling to cancel my appointment because I did not get the IVIG infusions. I protest getting the infusions. The receptionist immediately connects me to the neurologist. (I am shocked I am directly transferred to the doctor and am able to speak with her.) The physician again goes on and on how IVIG is my only treatment option. I need these infusions to save my life. If I refuse to receive the IVIG, the doctor informs me, she will not continue my care. "If you do not get the infusions, I will no longer be your doctor." Not wanting to find another neurologist, I reluctantly agree to get the IVIG.

I push off getting the IVIG until just a few days before my next appointment with my neurologist. I have much uneasiness and dread concerning the IVIG infusions. I pray to God that if I have a bad reaction, He will get me through it. I pray for strength and courage to carry forth.

When the day for the first IVIG infusion comes, I am strangely at peace. I am not nervous or anxious. I feel as though I am enveloped in an embrace of comfort. I enter the infusion center and check in. A nurse takes my vitals. Another nurse spots an open chair directly across from the nurses’ station. Despite the oodles of other open infusion recliners, she says I am to have this chair. She says she wants me to be close by the nurses since I have a ventilator. I am grateful for this chair. I thank God for placing me me so close to the nursing staff in case anything might happen during the infusion.

The nurse wheels me to the recliner and begins going over the procedure with me. I am carefully keeping an eye on the clock. I want to get this infusion done as fast as possible and get as far away as possible from this place as I can. Despite the calmness which fills my soul, an evil wickedness seem to encompass the infusion center.  A deep, dark nightmare is about the begin.

(Link to Part Two click here)



Tuesday, September 4, 2018

Stand in the rain. Stand your ground. Stand up when it’s all crashing down.

Oh my family and friends. How I wish I could say everything was gum drops and lollipops. How I wish I could say that these last few months of being constantly in and out of the hospital have lead to a grand improvement in my health. But, on the contrary, it seems I am getting sicker and sicker.

I am trying, really trying, to remain patient. I am trying to keep a brave and cheerful face as I endure more and more trials. I attempt to not let bad news such as finding out I have another hospital acquired infection raging in my lungs bring down my spirit. This new infection, pseudomonas, is a difficult bug to treat and kill. Moreover, it seems despite my best efforts at obtaining the proper antibiotics, my energy spent has not yielded any lasting fruit. I was given one dose of the proper antibiotics in the emergency department during one of my hospitalizations. However, upon being admitted to the hospital, all antibiotics were ceased because my symptoms greatly improved. As time has progressed, and the effects of the antibiotics fade into the past, my infection is coming back with a vengeance.

I am confused why it is so hard to get the correct antibiotics. I am perplexed why doctors continually cut off my antibiotics before the infection is ever killed. I often feel as though each antibiotic prescribed is coming out of the physician’s wages, which translates into me being prescribed very weak antibiotics or only a few doses of the correct antibiotic.

It is very frustrating having to fight through the pain, exhaustion and myriad of symptoms associated with these respiratory infrections. But, I keep telling myself, God is in control. He will lead me where I need to go. He is beside me, challenging me to rise above these obstacles. I am to keep my eyes on the heavenly rewards and not let these earthly trials cause me to stumble. Perhaps, one day I shall overcome these infections. Perhaps some day I’ll be able to better cope with these tests. Until then, may I find the strength and courage to “stand in the rain, stand your ground. Stand up when it’s all crashing down. Stand through the pain, you won’t drown. And one day what’s lost will be found. So stand in the rain”...(Song: Stand in the Rain by Superchick)