May their friendship never end

As I leave the car in the parking lot, I watch as a loving young woman helps her friend walk into the hotel lobby. I notice the friend is wearing a scarf around her head and looks very frail and weak. I admire the young woman who is helping her friend. What a tremendous gift to have such a sweet friendship.

When I enter the hotel lobby, I hear the front desk worker talk with the two ladies. The friend with cancer is here for one final battle with the beast. I can hear in the young woman's voice the desperation for her friend to have a triumphal victory. The front desk worker says, "There is always hope. We will not stop hoping until everything had been tried." The desk clerk's words of wisdom gives great comfort to the young woman.

As I make my way to the elevator, I think about the events I just witnessed. These two woman are here in search for a cure. For me, medicine is different. Will my doctor at tomorrow's appointment give me a path to a disease-free life? Will my doctor be able to offer anything which will lessen the burden of my disease or decrease the severity of my symptoms? The answer to all these questions is "no". When I go to my medical appointments, there is never any hope of every recovering. The only thing my doctors can do is provide urgent antibiotics for infections. Since there is no cure for any of the medical conditions I have, there is never any expectation my doctors can do anything to stop disease progression. And this is probably one of the hardest mental challenges one faces when chronically ill.

For years, I sought medical professional after medical professional hoping there was something, anything which might help me. Yes, there have been many instances where life-saving medicine was administered to me in the events of anaphylactic reactions, sepsis, organ failure, etc., but towards the cure of my medical ailments, nothing has been offered. Instead, it is day after day of dealing with endless symptoms. With each month and each year, I see my health slip away. Some times it happens slowly--the muscles in my feet started contracting involuntarily a few years ago; now they are almost always constantly contracted which makes it hard to place my feet flat on the ground. Other times, the medical decline happens almost overnight--one day I can breathe on my own, the next I am on a BiPAP machine and a few months later I am on a ventilator. It is often hard to come to terms with the complexities of ever-changing health.

I pray everything goes well for the two woman I met at the hotel. What a tremendous gift it is to have wonderful support during such great times of trial. Their friendship is such a beautiful expression of love. May it never fail.

"Love is patient, love is kind and is not jealous; love does not brag and is not arrogant, does not act unbecomingly; it does not seek its own, is not provoked, does not take into account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth; bears all things, believes all things, hopes all things, endures all things. Love never fails" (1 Corinthians 13:4-8).

Corona concerns: When the medically frail suffer

My friends are dying due to the constraints imposed by the corona virus. We cannot get our medical supplies. I have been informed all home visits for my respiratory needs have ceased. If my tubing or tracheostomy tube fail, I cannot get them replaced. If my ventilator needs service, I will not have access to immediate help. I will be forced to take up residence in the hospital.

Another immediate challenge is shortages at the pharmacy and grocery store. Folks with ventilators, CPAP and BiPAP machines require distilled water for their machines. (Using tap water can cause the machines to malfunction and can also introduce deadly bacteria into the airways.) My parents have traveled to numerous stores for a week in search of this precious commodity. Finally, they were able to find some distilled water at a pharmacy. Other medicines such as over-the-counter antihistamines, vitamins and pain relievers are next to impossible to find. A friend of mine just had surgery. He is supposed to take Tylenol for the pain. His wife has searched high and low, and so far, she had found none. Another friend of mine has severe vitamin deficiencies. He is having problems securing a steady supply of his needed vitamins to prevent further complications to his medical conditions.

Some of my friends are having "elective" procedures canceled. One friend has several bone fractures which require surgery. Her surgery has been postponed. It is considered elective because she is not at risk for immediate death. She has to continue to wait in horrible pain. Another friend has GI failure. Her port cracked, making it unusable. Getting a port replaced is considered an "elective" procedure. She is trying to eat and drink by mouth, but she is profusely vomiting everything back up. She will most likely be dead before next week.

Many clinics are shutting their doors. Some are doing telemedicine appointments. This may help some individuals, but insurance companies do not always cover such services. Additionally, not everyone has internet access and/or a device which supports the telemedicine software. Other doctors are simply canceling their appointments. My one friend has waited many months for an appointment to see a specialist. Her appointment has been canceled and rescheduled for November.

Another friend is in desperate need of an organ transplant. Many transplant facilities have closed their doors. She has been told maybe in September the facility will open back up. All hope of her getting a transplant has all but evaporated.

Some of my friends can no longer obtain their lifesaving medicines because manufacturing has shut down. Companies are switching over to produce other supplies for the corona virus. Meanwhile, my friends are developing life threatening complications because they cannot get their medicines. Even if they go to the hospital, they cannot receive the meds because they are no longer being produced.

Home visits have ceased or have been greatly reduced in frequency by home health agencies. Folks are not able to get the needed nursing services in their homes. Infections from not being able to get a catheter changed, administering medicine incorrectly or simply not being able to have a needed dressing changed have landed people in the hospital. Serious complications including death have occurred.

Another friend of mine was extremely ill. Her physician decided to prescribe home IV medicine to prevent the woman from having to go to the hospital. The medicines can cause life threatening reactions. The medicines were supposed to be administered by a home health nurse, but the home health agency does not have enough nurses. The woman was going to have to wait many days for service. Since my friends was very ill, she decided to administer the medicines in her home, all alone. Praise God, she did not have any adverse reactions.

So while we are trying to save folks from a virus, millions of people with chronic medical conditions are suffering and some are dying. We need America to get back to work. We need manufacturers to start making their regular products. America's most medically needy are at high risk for corona virus, but they are at an even higher risk for complications from not being able to receive medical goods and services. How many people will suffer negative consequences, a worsening of their medical condition or even death due to the severe changes imposed by our government? We may never know. All we can do is pray the world quickly returns back to a more normal way of functioning very soon.

Bad timing: Needing to see a new doctor

Recently, I lost my team of doctors. It was heartbreaking, but God arranged for me to have different doctors. I was so happy and excited everything was working out so well. But, now everything is again falling apart.

With the corona virus, doctors are closing their doors. I attempted to make an appointment with a new pulmonologist. Last week, the doctor's office was unsure when they could make an appointment. First the doctor was still planning on seeing patients, but as it neared the weekend, the doctor decided to do telemedicine only appointments. The office remained uncertain about the doctor's schedule. I called the office multiple times this week, but the phone goes to a recorded message. I also left an electronic message asking to schedule my appointment. I have a feeling they may have decided to closed their doors due to the corona virus.

My antibiotics have run out. My lungs are still heavy and feel congested. I have no idea how long doctors will keep their doors closed. I will just have to wait, hope and pray my health does not deteriorate any more. A trip to the hospital is the last place I want to be. Praying for symptom relief and for the world to get back to normal.

God says go; I say no

Two and a half years ago, I was experiencing significant health complications. I desperately needed a pulmonologist (and medical ally) to quickly resolve my medical issues. Finding assistance in my local area was extremely unproductive. I went from doctor to doctor, but no one was able to help. I could feel God tell me I needed to leave my immediate area and seek care elsewhere. But where was I supposed to go?

When a physician tried to intentionally kill me during a hospitalization, I knew it was time to go. Before being discharged from the hospital, my respiratory therapist from my durable medical equipment company told me to go to the medical center 400 miles away. Using just this information, God set up a number of miracles which lead me to an amazing pulmonologist.

I have greatly enjoyed my pulmonologist, but for the last year, I have known I have needed a different physician. I could sense there was little my doctor could do for me...but I love my pulmonologist so much. I can't leave her. God kept telling me to go. I kept saying no. Besides, I had no idea where to go.

Last week, my appointment with my pulmonologist did not go well. (For more details, please click here) She told me not to come back. I was extremely ill. I had planned on going to the emergency department at the hospital across the street from the clinic after my appointment, but my physician made it clear there was damning medical errors in my patient chart which would impede medical treatment. I greatly appreciated this information, but now where was I supposed to go? I went back to the hotel to think everything over.

My mom and I discussed the day's events and my options. There are a number of hospitals in and around the medical center. I could choose another hospital, but again, I was unsure which hospital to choose. For the last two and a half years, I have almost exclusively been at one hospital. The thought of learning the ropes of a new hospital and new doctors was quite frightening. But, not knowing what else to do, we chose a hospital I had visited once before and hoped for the best.

From the moment I entered this new hospital, God moved mountain after mountain to make everything work incredibly well. I was seen extremely quickly in the emergency department. I received exceptional care in the emergency department and hospital. Doctors believed what I said; my medical conditions were not questioned. Less than 10 hours after arriving in the emergency department, I was transferred to a hospital room. During rounds, I saw a new pulmonologist. I was told I could follow-up with this doctor or one of his associates. At just like that (in less than one day after losing my pulmonologist), I now have access to several pulmonologists.

I am trying to rejoice about all God's tremendous miracles, but my heart is still heavy. I dearly love my old pulmonologist. It is hard to lose a friend--a person who has greatly influenced my life. It is also difficult to say good-bye to one of God's carefully orchestrated miracles. Perhaps in time, as memories fade, my heart will mend and I will be able to fully rejoice in God's abundant blessings.

"I sought the LORD, and He answered me, and delivered me from all my fears. This poor man cried, and the LORD heard him and saved him out of all his troubles. The LORD is near to the brokenhearted and saves those who are crushed in spirit." (Psalm 34:4, 6, 18)

The girl just wants to say hi

Since getting my port, the left side of my chest where the port was placed is extremely sore. I cannot wear a shirt or any clothing over my port site. This has caused me to have to be creative with my clothing choices. I have camisole tops which have a shelf bra and thin straps. When I wear the camisole, I keep the strap up over my right shoulder, but I do not put my left arm through my left shoulder strap. The camisole has enough elasticity, using just the right shoulder strap which keeps everything cover in the front.

Since wearing just a camisole is rather chilly, I also wear a zip-up fleece. I again wear the jacket over my right shoulder, but I allow the left side of the fleece to hang off my left shoulder. I use the zipper to partially close the jacket.

The other night, I entered the living room to speak to my dad. When he glanced my direction, I saw him quickly fix his gaze back on the television screen. My father would not look at me during our conversation. I thought it was odd, but perhaps he was really interested in watching his show.

When I arrived back in my room, I looked down at my fleece. To my horror, my jacket was only partially zipped up, and my camisole on my left side had slipped down. There was my girl hanging out! Oh my!!! I just flashed my father! No wonder he would not look at me. I break into laughter. I think to myself, "Well, my girl just wanted to pop out and say 'hi!'"

Ever since this incident, I always make sure everything is covered up when I leave my room. Moreover, I have started zipping up my fleece jackets as far up as possible so if one of the girls decides to say hi again, she will be covered up by the fleece.

And just like that, I lost my team of doctors

Two and a half years ago, I met one of the most amazing physicians. The events which lead this doctor into my life were nothing more than divine miracles. I thought everything was going well. There were hiccups along the way, and there were instances in which it seemed my doctor had a grudge against me. But I brushed these situations aside and attributed them to my doctor and I having bad days.

After my appointment last fall, I decided I would not keep my doctor up-to-date about my hospitalizations. My relationship with my doctor seemed to be on shaky ground. I was not going to make a follow-up appointment unless God arranged for it to happen.

Several weeks ago, I was in extreme pain from my port. I reluctantly emailed my doctor to have her forward an email on to my infectious disease doctor. In the weeks to come, I was hospitalized for an infection. My doctor was informed about my hospital stay and actually was outside my room rounding on other patients in my unit. I was disappointed she never popped her head in to say, “Hi!” Again, I dismisssed this incident as her being busy and not knowing I was on the other side of a partially open curtain. At the end of that hospitalization, the hospital doctor called and schedule an appointment for me to see my doctor. I did not want to go to the appointment, but I had told God if He arranged for the appointment to happen, I would go. So off I went to see my doctor.

At my appointment, I could sense my doctor was being distant. I told her flat out I knew there was nothing she could do for me. I needed IV antibiotics, something she can’t/won’t prescribe. My remarks seemed to calm the air. My mom then told the doctor about all the troubles I have had since a doctor at the hospital put in my chart I have munchausen syndrome—i.e., I make up all my medical ailments. My beloved doctor suddenly exploded and said she believed I had munchausen! She then went on a rant about things which happened two and a half years ago (shortly after we met) which caused her grief and offended her pride. I was shocked she was talking about events from so long ago. If she had issues with me, I didn’t understand why she didn’t discuss the problems as they arose. We could have worked through the situations and hopefully come to a resolution. But instead, she said nothing, and stewed on her emotions for two and a half years.

God has warned me from the moment my doctor and I met He would use this relationship as He saw fit and would dissolve it at His will. Yesterday, my doctor told me not to come back to see her. I was hurt as I really like her as a physician and as a person. But I could sense God had been arranging for this split since the day my doctor accepted me as a patient.

Moreover, my doctor told me my infectious disease doctor also does not want to see me. So it seems in just one short appointment I lost my whole medical team.

So, where do I go from here? Like all of life’s adventures, I must continue to trust God. God can instantly move mountains and display His glorious works. I am a bit bummed I lost such a dear medical partnership, but I am grateful for everything the doctor has done in my life. I have no hard feelings about the break-up. I am praying God gives clarity to my doctor and allows her to find forgiveness.

Between a port and a hard place

The phone rings. It is my infectious disease (ID) doctor's nurse. She informs me my ID doctor has sent orders for me to have my port removed. I know this news should make me leap for joy. But, instead, I want to collapse in a heap of sorrow. I have fought for so long to get a port--to have permanent intravenous access. Now, I have it, but the port, which is providing this service, is causing havoc on my body.

The endless pain and symptoms which are plaguing my body every day often threaten to leave me shaking and in tears. I try everything to lessen my symptoms. But they never go away. I should be rejoicing these medical maladies should soon be a distant memory. But my heart breaks. I know the infections in my respiratory tract need to be treated...and they can only be treated with IV antibiotics. Once the port is removed, all hope of ever fighting these infections in the safety of my own home evaporates. When I no longer have IV access, the only way I will be able to obtain IV antibiotics is by being admitted to the hospital. The threat of acquiring another bacteria, which may be more drug-resistant than the bacteria my respiratory tract already harbors, is high. Nearly every time I have been hospitalized, I have picked up another bug.

As I ponder my choices, there seems to be none. Either I have to endure chronic intense pain, passing out, dizziness, palpitations, etc. and keep the port (and IV access), or I have to have the port removed and will be back in the hospital very soon. I wish there was another answer--an easy answer. But, my health always seems to be one where you have to choose between two poisons--both options will make you sick. The only choice is how sick do I want to get? The outcome of either decision is unknown.

Praying God makes a way, one which will be free of grave danger. I just want to be on the road to better health as quickly as possible.

With speed, go to the ED

At precisely 9 a.m., the phone rings the next morning. It is my infectious disease (ID) doctor's nurse. I smile when I hear her voice and am amazed my email (sent at 10:30 p.m. the night before) managed to make it from my pulmonologist to my ID doctor and to my ID doctor's nurse all before 9 o'clock in the morning. I feel like shouting "Hallelujah!" Finally, something may be done regarding this port.

My ID doctor's nurse is rather frantic. She tells me I need to go to the emergency department (ED) immediately. I tell her I cannot. I want to go to the ED at the medical facility where the port was placed. That is nearly 400 miles away. My mom and I need to pack and plan for the trip. (Moreover, it is Tuesday morning. I have Bible study in the evening. Although I feel absolutely awful, I am going to Bible study. Tonight, we are starting Judges chapter 13. It is the beginning of Samson's life. I have waited a whole year for this study. I was going to Bible study.) I did not tell the nurse about Bible study, but I stated we needed time to arrange the trip. She told me I should not be left alone due to my symptoms. I appreciate her concern. I hang up and started planning for a journey to the medical center.

Early Wednesday morning, my mom and I start packing the car. We load up all our luggage and my medical equipment. We are soon on our way. Minute after minute, I try to remain calm. But, I am overwhelmed with the prospect of going to the ED. The thought of enduring another round of being poked and prodded and asked endless questions makes me want to cry. Combine that with the tremendous pain radiating throughout my body, the trip to the medical facility is void of much conversation.

When I arrive at the ED, the waiting room is packed with people. I pray I am expedited through the waiting area since I have a home ventilator. Surprisingly, when I go through triage, the nurse makes a big deal that I have Mitochondrial Disease. She states I must have a room in the ED due to Mito. I am confused by this statement. No one has ever hurried along my treatment due to Mito. Usually, no one knows what it is. I have a feeling something must have happened in the recent past with a Mito patient and now there is a new protocol for folks with Mito. Despite this urgency, there are no rooms available in the ED. I wait and wait. About an hour passes from the time I am triaged until I am taken back to a room.

A doctor enters my tiny curtain-enclosed cubicle. From the doctor's demeanor, I have a feeling he is a resident. He asks few questions. He seems unconcerned. I try to explain how much pain I am in and how my ID doctor told me to come to the ED. The doctor leaves.

I wait and wait. Nothing happens. Almost an hour after arriving in my cubicle, a very sweet nurse arrives. She apologizes she has been on lunch. She draws my blood and leaves. Radiology appears in my cubicle and immediately takes a chest x-ray. Forty-five minutes pass. The resident doctor pops his head through the curtain. He says a few things and disappears. I am shaking uncontrollably in pain. Before I can ask if I am going to get anything for pain, he vanishes. I am not connected to any monitors. My heart is racing out of control, but no one can see it. I have no call button. Tears stream down my face. Screams radiate from my mouth as the pain rages.

Another 30 minutes pass. The resident doctor reappears. He sees my distressed state and tells me I am making up my pain. He says he saw me from the hallway and I was not acting like this. I am dumbfounded. I have been like this since the last time he saw me 30 minutes ago. Only now, the pain is much worse. The doctor goes on and says I do not have pneumonia and do not have an infection. I should follow up with a pain doctor to get pain medicine.

As this point, the pain is too much and this doctor's attitude is causing my blood to boil over. I erupt into a long tyrannical speech about needing pain medicine NOW!!! I go on to say it will be at least three more weeks to see the pain management doctor. (The doctor's office has yet to call back to make an appointment. With each passing day, the wait gets longer and longer.) He tells me I need to follow up with interventional radiology to see what they want to do regarding the port. I explode again stating it takes about three weeks to get an appointment with interventional radiology. What am I supposed to do in the meantime? I cannot keep on enduring all these symptoms. The pain is too much!

The doctor seems not to be listening and constantly interrupts me and tells me I am not listening. Now I am shaking in rage! Although the doctor does not say it, I feel as though he is dismissing my symptoms because at this hospital there are notes in my chart stating I have Munchhausen Syndrome (i.e., I make up my medical ailments). At this moment, I just want out of the ED. I have had enough. I am in extreme pain. Before the doctor leaves, my nurse arrives with a Tylenol #3. I am shocked for pain being ten out of ten on the pain scale, I am being given such a weak medicine. The doctor sarcastically says a few more words and then leaves.

In additional to the Tylenol, the doctor ordered some anti-nausea medicine and a half bag of IV fluids. After all this time of waiting, now they finally give me meds and fluids. I take the meds and allow the nurse to start the IV fluids. I call my mom. She says she will be at the hospital in 15 minutes.

After ten minutes, my nurse is back in my room, I tell her I need to leave. The IV fluids have barely infused into my veins. She disconnects me from the IV and takes out the needle. In a very bad spirit, I leave the ED. I wonder why I wasted my time coming here. I expended a lot of energy enduring this awful physician. When I see my mom in the waiting room, I want to jump into her arms. Oh, to be fleeing from this hospital facility feels so good.

My mom loads my medical equipment into the car. And off we go to the hotel. I am still shaking in pain, and now I have a soured attitude which is making my symptoms even worse. Why did I just travel almost 400 miles just to be released home in the same state I arrived to the emergency department? How can this be? Intense pain and fatigue battle each other for dominance. At the hotel, I take some pain medication. Soon, I drift off into a fitful night of sleep.


Link to Part One click here

All hope hangs on an email

It has seemed like a Herculean task trying to get a port. There have been numerous roadblocks and speed bumps which have arisen for over a year. Finally, I was able to get my port. But, perhaps the obstacles were not meant to be overcome.

Tears stream down my face. The pain, oh, the pain, it wants to consume me. My chest were the port was placed is exploding in pain. The pain radiates to my shoulder and shoots down my arm to my elbow and wrist. The feeling of pins and needles plagues my fingers. In my neck and head, a tremendous pressure makes it feel as though my head is going to burst. Immense pain shoots through my head and neck. Dizziness spells pounce upon me, making it feel as though I am on a ship far out at sea. My vision fades. Sometimes I just black out. Other times I pass out. Nausea and vomiting are close at hand.

I am frightened and scared. This cannot be right. There must be something wrong. I call interventional radiology several times. I am assured pain is normal. I am to take Tylenol for my symptoms. I try to explain this is more than just some nagging pain. The pain is horrific! On a good day, it is a seven on the pain scale. On a bad day, it is about a 9.5 on the pain scale.

I try to go about my day, but the constant symptoms make it nearly impossible to leave my bed. I feel so sick. I pray each day for symptom relieve.

In desperation, I ask an online community of folks with cystic fibrosis (almost all of whom have ports) if my myriad of medical maladies is normal. I receive few responses. I am told my symptoms are not the normal response to getting a port, but that it takes time for the port site to heal. I am told to give myself time to recover from the procedure.

I continue to wait and wait for a follow-up appointment with interventional radiology. Something needs to be done. This port cannot be causing this much pain. I wait and wait. Finally, the day of the appointment comes.

"Oh please, help me! I am so sick. The pain at my port site is raging out of control!" The nurse practitioner presses lightly on my port. I yelp in pain. My body shakes. My hands clench tightly together. I fight with all my effort to not break out in violent sobs. The nurse practitioner summons the doctor who placed my port. The doctor looks at the port from a distance. She tells me I am sensitive to pain. I need to see a pain management doctor to get pain medicine to manage my symptoms. "But," I protest, "This cannot be normal. There must be something wrong with the port." The doctor tells me I just need to take strong pain narcotics, something she cannot prescribe. I am given a referral to a pain management doctor. The wait time to see the pain management doctor is three weeks. I leave the appointment, disappointed and shaking uncontrollably in pain. How can I continue for another three weeks in this much pain with no pain medication? This thought threatens to send me into a crying fit.

More days pass. My symptoms intensify. Now, I begin experiencing palpitations and can feel my heart race. I develop an odd pain and swelling in my foot. When I place weight on my foot, I develop an awful, excruciating deep pain. As soon as I stop bearing weight on the foot, the pain disappears. During this time, I also notice I have a large bruise on my knee. I do not remember do anything to my knee. It too only hurts when I place weight on it. I immediately think back to the times I have had blood clots. Yes, these symptoms are highly reminiscent of the times I have had blood clots in my legs. I try to bury these thoughts, but my heart nearly wants to break from this overload of information.

Searching for more information about ports, I reach out to a Mitochondrial Disease group on Facebook. I briefly explain the symptoms I have been having. I ask how long it takes to recover from the procedure. Like a firestorm, my post receives numerous responses telling me this is not normal. I need to get to the emergency department. I need the port to be checked out. Several people who comment work in the medical field. One nurse gives me a very detailed outline of everything which needs to be done regarding my port. She says at the end of it all, "When nothing can be figured out, but the port is causing a lot of pain, we will pull the port." I appreciate her words, but I absolutely deny this port is going to be pulled. I have been through so much. Something will be done to save it. 

I decide I desperately need to contact my infectious disease (ID) doctor who ordered my port. But how can I contact him? I have a phone number to his office, but to leave a message and try to explain all these recent events seems like a monumental task. Due to the severe pain, I am short of breath. Talking is difficult and thinking quickly to articulate words seems nearly impossible. I decide to make a bold move. I have my pulmonologist's email address. My pulmonologist knows my ID doctor. Perhaps she has his email or has a way to get my email into his possession. I am reluctant to send the email. I know she is extremely busy. I do not want to bother her with my kindergarten concerns. But after much deliberation, I decide this is my only option. I type up an email and at 10:30 p.m., I hit "send". I drift off to sleep and hope the email gets to my ID doctor in the next few days.


Link to Part Two click here