Ports, only for cancer patients

A year ago, my pulmonologist suggested I get a port for long term IV access instead of getting PICC lines. I was apprehensive about getting something that would be more invasive. However, I do not like PICC lines. I am allergic to the tape dressings which are required to cover the PICC line insertion site. All my PICC lines have developed infections. Ports are placed under the skin. Only when the port is accessed (i.e., the line is being used to administer IV medicine) does a dressing need to cover the area. Otherwise, the port is protected by the skin, which means you can shower and get the area wet—something you cannot do with a PICC line.

When I attempted to get a port a year ago while hospitalized, I was severely scorned for wanting a port. I was told, “Ports are only for cancer patients.” The doctor gave me a long monologue about why I should not get a port. At the end of a very long speech, the doctor said she would do the procedure, but it could be a day or two until it could be done. I was restless. I had been in the hospital far too long. If I got a PICC line, I could be discharged in the morning. I reluctantly agree to have another PICC line.

In April, the line became infected and had to be pulled. In June, I needed IV access again for more antibiotics. When my infectious disease (ID) doctor said I needed a PICC line, I completely forgot to ask for a port. So, I got another PICC line. In November, the line became infected and had to be pulled.

Recently, when I had my ID appointment, I again needed IV antibiotics. The doctor told me he thought I should get a port instead of a PICC line. He described the benefits of a port. I happily agreed to get a port.

I wait and wait to hear from the hospital to setup the appointment. Finally, I call the hospital only to find out the doctor’s office forgot to send over the orders. Once this is resolved, I am all setup to receive my port. I speak to several people before my appointment and state I am getting a port. No one says anything to the contrary. On the day of the procedure, person after person asks why I was here. I say, “I am getting a port.” Right before the procedure, a nurse comes in to review everything once more. She asks why I am here. When I say I am getting a port, she freezes. “No, you are getting a tunneled catheter called a proline. You are not getting a port.” I am confused. No, my doctor and I discussed a port. All her paperwork says I am to get a proline. The nurse calls to ask what needs to be done to get a port. She then tells me it would take a while to get new doctor’s orders and insurance approval. Additionally, she tells me a proline is what they usually do for people who need antibiotics. Ports are only for cancer patients. With a broken heart, I agree to get a proline.

As I am being prepared for the procedure, I nearly start crying. A proline is a similar procedure to a port, but the end of the catheter hangs out of your chest. (A proline is like having a PICC line in your chest.) Hence, the line cannot get wet. It must be covered with a dressing at all times. As I think about all the extra precautions, my body screams out, “No!!! Do not get this!” I tell the nurse I do not what the procedure. The nurse informs me I can get the proline, and then follow up with my doctor to get a port. The thought of enduring TWO procedures makes me want to scream. Thankfully, at this moment, the doctor who is going to preform the procedure walks in.

Proline

I ask the doctor about the proline. She describes the procedure and tells me this is what they do for folks who need antibiotics for 6-8 weeks. I quickly interject and tell the doctor I have chronic lung infections. I will need antibiotics for the rest of my life. I need a port. After listening to my concerns, the doctor agrees. Yes, a port would be a better option if I am going to need IV access for an indefinite time. The procedure is scrubbed. My ID doctor is contacted. Now it’s time to wait for a new set of orders. Maybe some day, some day soon, I will get a port.

75 years. Have we forgotten?

I stand on a sun-drenched hillside, overlooking the Amper River. The strong summer rays of the sun warm my skin. As I gaze out over the beautiful country landscape, I wonder how such a pristine slice of the world could be the home to the slaughter of tens of thousands of people. As I turn my back from this stunning scenery, my breath catches in my throat. Although the sun is brightly shining, a death-like cold overwhelms me as I face the entrance to Dachau concentration camp in southern Germany.

This year marks the 75th anniversary of the liberation of many concentration camps including Dachau and Auschwitz. But as with so many events in history, do we remember? Do we remember how Hitler rose to power, and how so many people were coerced into killing millions of their neighbors? Do we remember how easy it was for propaganda and slanted political ads to sway the votes of a nation?

As each week and each month pass, my heart breaks as I learn of more and more anti-Semitic acts of violence. There is Pittsburgh, Poway, Jersey City and New York City--all places which are now marred by heinous crimes against Jews. As we look across the ocean to Europe, they too have had a dramatic increase in violent crimes against Jews.

I could wonder why this is all happening, but it is not hard to understand. It is lack of education. In a recent poll, 66% of millennials did not know what Auschwitz was! We have failed. We have failed to teach our children the importance of respect. We have failed to teach each generation the atrocities which occur when we do not love our neighbor as our self.

Although we may not individually be able to change the world, we can change the world around us. Comfort those in time of mourning, lend to others expecting nothing in return, extend charity to someone in need. The darkness in this world is great, but we can bring light into the world with acts of kindness.

"Do not let kindness and truth leave you; bind them around your neck, write them on the tablet of your heart." (Proverbs 3:3)

You may throw the dice, but the LORD determines the outcome

As I was scrolling through Facebook, I saw a post from a gentleman stating we are responsible for our choices and the events which come about because of those choices. I usually do not respond much on Facebook--it is a waste of my time and energy; however, this comment made me quite upset. I see it as flawed logic.

Many people believe if you choose A and your outcome is A, you should not be upset about the outcome since you choose A. In a perfect world, I could agree with this. However, many times we choose A, and we get outcome P, U and Z--things which we never imagined could have happened by making our choice. In fact, if we would have been alerted to the outcome of our decision, we would have made a different choice.

Moreover, there are often events which happen in our lives which are beyond our control. For example, you are walking down the street, and you are hit from behind by a speeding car which lost control and jumped the curb. Subsequently, you are paralyzed from the neck down. You cannot work. You lose your home and have to file for bankruptcy due to the enormous amount of debt accumulated from extensive medical bills. I know there are folks out there saying, "If you would have been paying attention while walking down the sidewalk, you should have heard the car hit the curb and in the few milliseconds of advance warning, you should have been able to move out of the way. You would not have had all these other unfortunate events. You are just playing the victim." I call this logic, "It did not happen to you; therefore, the event could have been avoided."

I believe life is all about making choices. Most often, we like to feel we are responsible for the outcomes of our choices. If you choose to study hard in college, then go on to law school and become a lawyer, we feel we worked hard; therefore, we deserve the outcome. What if you studied hard in college, went to law school and in the middle of your studies, your father was killed? Now, since you are the oldest, you are needed to support your mom and five younger siblings. You do not have the time to commute halfway around the country to run the family business and continue your studies. Now you have to make the decision to continue pursuing your dream or supporting your family. You must make a very difficult decision, and the outcome of either choice is unknown.

And this is where God comes into play. We are constantly faced with decisions to make, but the outcome is one which God controls. We have seen two people in similar situations make the same choice, but the outcome can be vastly different. Why does this occur? For example, how can two people who decide to get drunk and then decide to get behind the wheel have two very different outcomes? The answer is God. We may make decisions, but the outcome is from God.

And this is what we have to accept. Whatever comes into our lives, God has allowed it to happen. Things often happen which are far beyond our control. The challenge is not that an event happened, but it is how you respond to the situation. You can choose to be happy, sad or indifferent. You can choose how this outcome will affect the rest of your life--and that is the real test.

"The lot is cast into the lap, but every decision is from the LORD" (Proverbs 16:33).

Making up for a missed phone call

Recently, I had a follow-up appointment with my infectious disease (ID). I was nervous. How would the doctor react to seeing me again? The last time I saw him was in October for an appointment. He never called after my sputum cultures revealed I was harboring a very deadly bacterium. Instead, I was told I was not sick. Two weeks passed. I progressively became more and more ill. I finally went to the emergency department. I had pneumonia and meningitis. Infectious disease was contacted, and they flew into action. They were scrambling to get the infection under control. They had messed up. I should have been treated for this infection two weeks prior.

Before I see my ID doctor, I first see a resident doctor. She tells me she reviewed my medical records from my last hospital stay. (This doctor has no clue what transpired last October/November. The events which happened are not recorded in my medical records. The only thing which is documented is my interaction with a hospital doctor who said I was not sick; she claimed I had Munchausen Syndrome. Henceforth, the only data available to this resident doctor is erroneous information.) The resident doctor tells me the last time I was in the hospital I was not sick. She says a few other things which seem to be a combination of my previous ID appointment and previous hospital stays. I am not able to follow the doctor's comments.

I have been feeling quite ill since being discharged in November from the hospital. Today, I am coughing a lot and am bringing up a lot of sputum. The resident doctor writes down my complaints and notes my symptoms. She seems unconcerned. I have a feeling nothing will be done to treat the bacteria in my lungs. The resident doctor leaves.

A short while late, my ID doctor enters the room. He tells me he wants to get a sputum culture and chest x-ray. He tells me during my last hospitalization, the sputum culture, which was not resulted until after I was discharged, showed I was growing a bacterium which can only be treated with IV antibiotics. He says I should probably get a port if the sputum culture still shows I need IV antibiotics. He discusses briefly with me why getting a port is a good idea. He gives me the orders for the chest x-ray and sputum culture. He tells me he will call with the results.

When I leave the appointment, I am dumb-founded. I can't believe the appointment went so smoothly. I did not have to beg for antibiotics. I did not have to plead my case to get a port instead of the usual PICC line. It felt as though the doctor was moving quickly and being aggressive because the last appointment he did not take me seriously...and I became very, very sick. This is the first time I have talked to the doctor since my appointment last October. Although he never mentions my last hospitalization or appointment, it is palpable the doctor is trying to make up for some of his missteps. I do not have any bad feelings toward the doctor. I just want to get better, and I am glad he is trying to help get me on the path to better health. Praise God!

A frightful scare, when there's only CO2 in the air!

For the last several days, the tubing on my ventilator has not been functioning properly. I knew it was time to change out the tubing; however, since the tubing is expensive, I try to wait until the tubing starts failing significantly before breaking open a new tubing set.

As I am sitting in my bed, I am becoming very short of breath. My ventilator is not giving me enough air pressure to my lungs, which causes me to breathe more quickly. I decide it is time to change out the tubing. I find a new tubing set in my closet. I rip open the package. As I am hooking up the new tubing, I notice this tubing is different from my old tubing. The exhalation valve is different. I think to myself, "Oh, good. I hope this new exhalation valve works better. The old exhalation valves were very fragile and broke easily." I finish attaching the tubing. I then hook back up to the ventilator.

Immediately, I notice my ventilator is giving me VERY TINY breaths of air. I try and try to breathe, but the longer the machine is on, the more ragged my breathing is becoming. I am checking everything on the tubing. I then notice on my ventilator, the leak is a third of what it usually is. (The exhalation valve creates a leak in the tubing which allows the carbon dioxide to escape. If you block the exhalation valve, the tubing leak decreases, which means the carbon dioxide cannot escape. The new tubing set is retaining almost all the carbon dioxide I am exhaling. This means with each breathe I take, I am inhaling more and more carbon dioxide.) The harder I try to breathe, the faster my breathing becomes. My heart is racing, and I am starting to tremble. It feels as though the world is going to end. My carbon dioxide levels are climbing high very quickly.

I frantically pick up the phone and call my respiratory therapist from my durable medical equipment  company. I pray she answers. On the third ring she picks up. I am gasping for breathe as I tell her my issue with the tubing. She informs me, yes, the company has switched to these new tubing sets, but they are compatible with my ventilator. I explain my situation. She tells me she has some old tubing sets still in her inventory. She can have the tubing sets to me in a few days. But, in the meantime, I should switch over to my travel tubing. (My travel tubing is just a hose and does not have the ability to connect to my heater/humidifier. It just pumps room air directly into my lungs.) My respiratory therapist explains since my travel tubing is just an air hose, I will need to connect an exhalation valve to allow the carbon dioxide to escape.

EUREKA!!! That's it! That's how I can fix my tubing! I have an old-style exhalation valve. I can just take the exhalation valve off my new tubing and exchange it with an old-style exhalation valve. I explain my plan of action and thank the respiratory therapist for her help. I hang up the phone.

I frantically search my closet for an old-style exhalation valve. Behold! I find one. I struggle and struggle. Then "pop!" The exhalation valve breaks loose from my new tubing. I snap on an old-style exhalation valve. I quickly hook back up to my ventilator. I frantically take short, quick breaths, trying to rid my body of the carbon dioxide which has built up in my body. I watch the numbers on my ventilator. HALLELUJAH! The old-style exhalation valve is providing more leak in my tubing, which is allowing the carbon dioxide to escape. For the next half-hour, I do not move. I am exhausted, and my body trembles from the tremendous amount of stress. Very slowly, my carbon dioxide levels return back to normal. I thank God I was given the information and means to fix this issue. I am praying the new tubing exhalation valve does not cause trouble for anyone else. What a frightful experience.

"Let everything that has breath praise the LORD. Praise the LORD!" (Psalm 150:6)

Help from an unlikely source

I learned a lesson from my father a long time ago: be nice to all people who serve you—housekeepers, maintenance people and any other job which may be looked down upon by society. My father often exhibited this when he would take a few moments to greet and say a few words to the cleaning company who cleaned his place of employment. The people always seemed appreciative of his words and his recognition of their existence.

Through the years, I have tried to continue this practice. When I am in the hospital, of course you are kind to the physicians, but I try to be extra courteous to the food servers, housekeeping, maintenance and anyone else with a lower status.

Whenever I am admitted to the hospital, I always have a respiratory therapist (RT). They often have good insight into respiratory conditions, my ventilator and other respiratory needs. Although I sometimes get annoyed with their lack of general medical knowledge, I try to remain grateful for their input, smile and be pleasant.

There is one RT in one of the hospitals I frequent, who I do not care for. She does her job, but her demeanor often comes off as cold. Despite this, I do what I can to be respectful and thank her for her services.

Recently, when I was in the emergency department (ED), I was having a severe pain attack. When a medical team came running to my bed because I was struggling to breathe, it was the RT who bravely stepped up and told the nurses and doctors, “The patient is having a pain attack. Her breathing becomes very labored when she is in a lot of pain. Once her pain is controlled, her breathing improves. I have seen this happen to her when she has previously been in the ED.”

I was stunned, simply STUNNED by the RT’s observation. She has been the ONLY person to notice and voice this observation. Yes, when I am in severe pain, my airways swell up, making it nearly impossible for me to breathe. Here, this woman I thought was cold and uncaring is actually very observant. And amazingly, the medical team took her advice, and gave me fentanyl for pain relief. And soon, my breathing was back to a better pace.

As I think about this situation, tears burst from my eyes. The RT could have remained silent. The RT could have ignored her observations and not assited my case. But she decided to speak up and help get me out of extreme pain. After all these years, who knew my father’s words and actions could help me so many years in the future. Praise be to God!

To be or not to be a guinea pig

Many years ago, when I first started out on my adventures into the world of medicine as a patient, I had a very wise physician. He was a rare find. Before becoming a doctor, he worked as a pharmacist. Henceforth, he knew EVERYTHING about the drugs he prescribed. One of the very first things he told me was, "You do not need to be a guinea pig. If a drug does not have a generic version, meaning it has been on the market for less than 20 years, do not take it. Drugs are pushed very quickly through clinical trials. Side effects are unknown for many years. If a drug is at least 20 years old, the drug's side effects will be well known."

I have tried to always keep these words of wisdom at the forefront of my mind when prescribed drugs by physicians. However, when I do not adhere to my old physician's advice, things go very badly. Almost all the drugs in which I have had severe and sometimes life threatening reactions, have all been drugs which are less than 20 years old.

Recently a therapy comprised of three drugs was FDA approved which treats cystic fibrosis (CF). This new drug cocktail is being hailed as the life saving therapy for a disease which has few treatment options. I watched as many of my friends started this therapy. Almost all of them became significantly ill for the first one to two months, but then, miraculously, they started feeling better and seeing major improvements in their CF symptoms. One of my friends had an increase in her lung function by 15% in just three months! Now her need for a lung transplant has been placed on hold. Everyone was doing a happy dance. I kept praying there would be no adverse reactions to this new therapy.

On December 11, a precious ten year old girl received her first supply of this triple medicine potion. Within a day of starting the therapy, Kirabell was quite sick. On December 14, she was rushed to the hospital. Her health declined very quickly. To decrease the stress on her lungs, she was started on ECMO (extra-corporeal membrane oxygenation). The little girl's kidneys failed, and she began dialysis. Day after day, little Kirabell fought and fought to stay alive. Her kidneys slowly improved. On Tuesday, Kirabell's liver starting failing. Yesterday, she passed away.

 

One could wonder if this new CF therapy was the cause of Kirabell's abrupt health decline. I believe this to be true. This new therapy has only been on the market since late October. There is so much unknown about it. Unfortunately, when you have a life-limiting medical condition, there is a lot of pressure to try something, anything which may improve one's health. Sadly, the very thing you have put your trust in may be the very thing which kills you. Living with a chronic medical condition is one often fraught with many choices. To be or not to be a guinea pig--which one you choose may forever change your life, for better or for worse.


In loving memory of Kira Isabell Herlein.

2020: A look forward

As the year on the calendar flips, I ponder the year ahead. As with all my visions, my imagination and reality rarely align. I always envision my year filled with no medical emergencies and no doctor visits. I know this is always wishful thinking as I have already had one appointment this year (and have two additional appointments scheduled).

The main issue which is constantly at hand is my health. I have five bacteria in my lungs. I am mildly to moderately sick as these bacteria play in my lungs. One bacterium needs intervenous antibiotics. If this bacterium is to be treated, I either need to be admitted to the hospital, get a peripherally inserted central catheter or have a port placed. (I do not like any of these options, but something needs to be done if I want to be back on the road to better health.)

Next up is my pancreas. I had major issues with my pancreas in 2018. I lost a significant amount of weight. I sought doctor after doctor trying to find someone to help me. Unfortunately, the pancreas is an orphan organ. Gastrointestinal doctors will not treat the pancreas. Endocrinologists will assist with the pancreas if your issues are a result of diabetes. But, if you have chronic pancreatitis, there are very few physicians willing to help. Moreover, since we are in this ridiculous "opioid epidemic", no one will administer pain medicine. If you need more than Tylenol to manage your pain (and believe me, chronic pancreatitis is EXTREMELY painful), you have to see an additional doctor who specializes in pain management. But again, pain management physicians do not like to treat pancreatic pain since it is out of their normal treatment realm. (Most pain management doctors treat head, back and neck pain. Anything more beyond that, patients are directed to seek care elsewhere.)

Thankfully, after traveling hundreds and hundreds of miles, I was finally able to find a physician who treated the pancreas. I was able to have a procedure done on my pancreas in which a large cyst was drained, my ducts were stented open and a sphincter was cut. I was doing well, but late in 2019, I started having pancreas issues again. I hope these episodes reduce in frequency and intensity. I am praying my pancreas does not cause any issues in 2020.

Lastly, I hope and pray my health does not interfere with attending weekly Bible study. Reading and studying the Bible is one of my passions. I always tell God, "If I am not in the hospital, I am going to Bible study." This line of thought is often extended beyond that. If I am severely ill the day before or day of Bible study, I will try to hold off going to the hospital until Bible study ends. Moreover, if I am in the hospital, I desperately push the doctors to discharge me home in time to attend Bible study. And there have been some really close calls. After one hospital discharge, I arrived home at 5:59 p.m. I had just enough time to gather up the items needed for Bible study, make some tea and bolt out the door to arrive just in time for the 6:30 p.m. start time.

Whatever awaits us in this new year, may we do all things to glorify God. Happy 2020!

"Whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks through Him to God the Father." (Colossians 3:17)

2019: A year of a million memories

Two thousand and nineteen has, in many respects, been a repeat of previous years. Yes, there were lots of highlights, but for the most part, there were numerous memories from the past. This year marked many ten year anniversaries.

December 11, 2008, is a date which will be forever seared in my memory. It is a day I should have died if God had not miraculously intervened. Although I survived sepsis with organ failure, the life I knew had ended. During the ensuing weeks, my health started to quickly decline; I was thrust into the world of medicine as a patient searching for answers. On July 9, 2009, doctor number 87 gave me my first official diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS). Despite fighting and fighting to hang on to the dream I had worked my whole life for, I was losing the battle. On October 10, 2009, I had to make a heart-breaking decision--it was time to give up everything and go live with my parents. (For more details, please click here)

Although I had a diagnosis of POTS, my doctor and I were convinced there was something else causing my endless symptoms. During the next several years, I employed all my skills and knowledge to figure out what was plaguing me. I knew once I had a diagnosis, I could get better. When the words "Mitochondrial Disease" and "chronic progressive illness" entered my vocabulary, I thought, "Ok. I am not going to be able to recover from this hurdle. But I will do everything I can to get stabilized, and then I will exit the world of medicine never to return." And I did just that. After battling gastrointestinal failure, autonomic nervous system dysfunction, strokes, pancreatitis attacks, etc., I finally got myself to a point where I happily left my doctors behind and started pretending there was nothing wrong with me.

This all worked until December 2016 when my breathing abruptly took a turn for the worse. Once more, I fought and fought through this obstacle. When I got a tracheostomy in May 2017, I again believed I just needed to get myself stabilized, and then I would again depart from medicine. Unfortunately, that plan never worked. In July 2017, I developed my first hospital-acquired respiratory infection. And from there, I have had fourteen additional infections. I kept telling myself, "I just need to get rid of this bug, and then I will be done with doctors." But as hard as I tried, God kept sending infection after infection.

And that brings me to 2019. I continued to battle Pseudomonas, a nasty bacterium I had acquired in July 2018 from a hospital ventilator. But now, my frequent hospitalizations triggered suspicion among my doctors. A diagnosis of Munchausen Syndrome was attached to my chart. Although this is a new (and absolutely ridiculous) diagnosis, I was once more being cast off into the psychiatric ward. Instead of treating my infection (which was confirmed by blood tests, findings on radiological studies and sputum cultures), I was told I was not sick. Subsequently, treatment was ceased; the infection never cleared; illness reoccurred. The only option was to go back to the hospital and hope and pray the Munchausen diagnosis disappears. (It does not.)

During future hospitalizations, everything is questioned. It does not matter that all logic says you are sick with pneumonia. My doctors have a special mission to prove I am a fraud. (I pretended to have a fever, and the nurse charted it. I desired to have elevated white blood cell counts, and the laboratory recorded it. I fooled the radiologist to document I had pneumonia in my lungs. I faked having bacteria in my respiratory tract and somehow coerced the imaginary bacteria to grow on culture media. Obviously, you can see how absurd this all is...but to my doctors, I have Munchausen Syndrome, and this is what people with Munchausen do--feign illness.)

In addition to all this, I was mourning for my old life. Now that I was back in the world of medicine, I was surrounded by so many people living out their dreams...living out my dream. As time progressed, people moved through their training programs. They graduated and continued pursuing their hopes and aspirations. I stayed the same. I was still sick, still fighting respiratory tract infections and still the patient. As doctors dismissed my symptoms, I wondered why I even tried. Why do I continue on this medical merry-go-round just to be tossed off and thrown into the dirt? With this soured mindset, I began making bad decisions. I resolved I would not go back to the hospital no matter how sick I was.

When I was extremely ill, my mom would chasten me for not seeking medical treatment. Although I am normally disinclined to follow advice contrary to my desires, when I am sick, I am reminded to follow the fifth commandment--honor your father and mother. Under protest, I would go to the emergency department. I would sarcastically say to myself, "If they are going to diagnosis me with Munchausen, it should really be Munchausen by proxy; I am only seeking medical attention because my mom dragged me here!" My mom, however, would be right. I was very sick. Sepsis, pneumonia, stroke and meningitis are some of the conditions in which I found myself in the emergency department during this last year. If I would have remained at home, I probably would not be here.

Thank you everyone who has supported me through this journey. It has been a blessing to have such amazing friends and allies as we walk this life together. Whatever lies before us in 2020, it is with the assurance of God's endless love that we can confidently continue being valiant warriors through all life's adventures. Happy New Year!