In the next week, my doctors will likely admit me to the hospital for Intravenous (IV) Antibiotics.
People often ask me, and even in discussions among other CF patients, “when do you know it’s time?”
CF patients tend to colonize bacterial infections that grow and even thrive in tiny recesses of our dark, moist airways. Over time, these infections learn to resist antibiotics to the point where only a few medications work, and those medications only come in IV form. I do my IV antibiotics either in the hospital, at home, or via a combination of the two.
During a typical course of IV antibiotics, I take 2 or 3 different medications for a 14-21 days. Sometimes, I only go into the hospital for 3-5 days and finish the course at home using a PICC line. However, If I am very sick, they may keep me there for the entire time, providing various levels of care and monitoring.
Some clinics refer to planned courses of medication and intense Respiratory therapy as “Tune Ups.” In Denmark, all CF patients who culture bacterial infections in their lungs, regardless of symptoms, go on IV antibiotics every 3 months. Interestingly, they also boast the highest life expectancy of any country in the world.
So how do we make the decision to begin IV antibiotics?
Thankfully, my clinic works with me on making decisions like these. Care plans take as much art as science if we want to obtain both quantitative and qualitative improvements.
We have so many tools at our disposal to track changes in our health.My care team keeps track of everything they can so that they can spot trends before they cause too much damage, and to monitor the efficacy of treatment plans.
Remember the petri dish in Biology class? I provide my doctor with a Sputum Sample (basically a glob of mucus from my lungs) and they send them off to a lab to see what bacteria grows, and then which medications work against them. I currently colonize six bacterial infections, each with its own list of Resistances and Sensitivities. Knowing what is growing is imperative because frequent lung infections leads to lung damage, and ultimately, premature death in 80% of patients.
The above is part of my Sputum sample test results, showing one of the six bacterial strains I currently culture – and the medications that will and will not treat that particular bacteria. Colonization of Pseudomonas Aeriginosa (PA), which causes pneumonia in CF patients, is clearly linked to a marked decrease in lung health.
Pulmonary Function Tests (PFTs)
Every time I visit my CF clinic, I perform a Pulmonary Function Test (PFT) to measure my lung function. I basically breathe into a machine that calculates various functions of the lungs. The two most important functions they look at:
- FVC – Forced Vital Capacity – how much air I can inhale. The numbers to the left show the volume in Liters. The highest number is 4 liters – think of that as a two 2-liter bottles of soda. Now consider that you have lost one entire 2-liter of Coke plus half of the other 2-liter bottle. That’s how little lung function I had a year ago.
- FEV1 – Forced Expiratory Volume – how much air I can exhale over one (1) second. It helps indicate levels of inflammation in the airways.
My lung function numbers from last month were on a downward trend, and is likely continuing to go down, despite several rounds of oral antibiotics and a lot of airway clearance. I repeat my PFTs on Monday.
It’s important to know the level of Oxygen in the CF patient’s blood. This monitor is non-invasive, and gives results within a few seconds. In addition to measuring Oxygen Saturation, it shows the patient’s pulse. A higher heart rate can indicate that the heart is beating faster to keep up with the demand for Oxygen.
My O2 Sats tend to hang out around 97-100, but this week has been around 92-95. My usual resting heart rate is around 60, so this number is a bit higher than I’d like. Low Oxygen levels affects nearly everything I do. I usually become aware of drops in my Oxygen levels when it becomes more difficult to walk up a flight of stairs or I become short of breath just laying in bed.
When I am healthy, I tend to have stable Blood Pressure (around 120/70), but when I am sick, my blood pressure tends to drop as low as the 60/40 range – a significant difference. While in the hospital, anytime my blood pressure drops, the nurses recheck me every hour to see if I am improving or not.
I typically get Chest X-rays done annually, so it’s easy to spot changes from my baseline when I am sick. Certain types of infections or lung conditions create interesting shadows and white spots on the X-ray, and can tell doctors if there are areas where air is not moving, if there are pockets of infection, or areas containing substances not normally present (like fluid).
I am jabbed annually to check all my numbers, but when I am sick, my doctors like to check things like level of inflammation, White Blood Cells, Vitamin deficiencies, changes in any of my major organs (kidneys, liver, pancreas), etc. Since some Antibiotics can cause injury to organs, it’s important to know your baseline before starting new medications. I developed Kidney damage last fall from unusually high levels of medication in my kidneys.
While Science is important in making treatment plans, doctors have to rely on more than just numbers. They rely on clinical observation (checkups) and patient feedback to help make decisions.
My clinic hands each patient a survey to fill out while waiting to see the doctor (and all of the other members of the team). The self-assessment is a detailed questionnaire where I can note changes in my health and treatments.
- Increase/decrease in Chest pain, cough, mucus, shortness of breath, wheezing, exercise tolerance, etc.
- Changes in stomach pain, nausea, diarrhea, constipation, etc.
- New symptoms such as exercise intolerance, loss of appetite, unintentional weight loss, or issues for which one might see another doctor, etc.
- Review of medications – names, dosages, schedules and any changes.
I also review a print-out of my medications, dosages and schedule, whether anything has changed, and if I need refills. In any given month I might have taken more than 30 or 40 different medications and supplements – about 2/3 I take daily and/or regularly, and the rest I take either in “courses” – for example, two weeks of an Antibiotic, and/or “PRN” (as needed) – such as Ibuprofen for a headache .
Meeting with the rest of the Care Team
CF clinics employ “Care Teams” made of various professionals dedicated to overall care. It’s beneficial to patients to have access to everyone at one appointment, because it’s so important to limit our time spent in places where people are sick, and it allows our care team members to communicate with the entire team at once. At my clinic, the entire team meets every morning to discuss patients who have appointments that day.
- Respiratory Therapist – reviews my current Airway Clearance regimen and makes suggestions if my lung health has deteriorated.
- Physical Therapist – helps me keep active when I am healthy or sick. In the hospital, she has arranged for me to have a Stationary Bike in my patient room.
- Social Worker – helps locate resources for mental health, insurance, arranging additional local services if needed.
- Nutritionist – when CF patients are sick, they need additional nutritional assistance. In the hospital, this means full access to the menu, extra food and treats, etc.
It’s great when the patient’s self observation matches up with the physician’s assessments and the quantitative test results. Every bit of evidence that supports other evidence increases confidence in prescribing treatment: for example, the patient reports wheezing upon exhaling, the physician observes it during the clinical exam, and the Pulmonary Function Test marks differences in air flow that is indicative of inflamed airways.
- Listening to my lungs to identify wheezing, crackling and areas where air isn’t moving properly.
- Checking ears, nose and mouth.
- Palpitating my stomach to locate areas of pain or obstruction.
- Inspecting fingertips for clubbing and evidence of low oxygen (such as a blue tinge to nails).
Once we recognize that going on IV Antibiotics is inevitable, my husband and I start planning.
- Clean, organize, and pack. Doing so gives me a little control because I will have close to no control in the hospital. I also like to have things relatively neat and organized for when I come home, and for when people come over (Home health nurse, visitors, etc.). I also like to have most of the laundry done in case I am in the hospital for longer than a few days.
- Update and print my Medication list (in triplicate) and review which ones my hospital does not carry.
- Set aside stuff to pack should I get admitted to the hospital. A blanket, a stuffed animal (or two!)
- Hubby has to talk to his employer and arrange an amended schedule for him to work from my hospital room and/or home at night.
- Take care of paperwork, phone calls, and anything else I might not be able to do from the hospital.
- Take hundreds of pictures of the cats to make me smile during rough nights.
When we decide it’s time to go on IV antibiotics, my doctors try to make the process as smooth as possible. We have to arrange placement of the PICC line, all diagnostic testing, arrange for the Home Healthcare people to order my medications and supplies, and find a private room (I am on contact precautions which means that my germs can be transmitted to other CF patients or people with compromised immune systems).
So much goes into these decisions that it can become quite overwhelming. It’s never an easy decision, but it’s one better made in preparation and for prevention, rather in response to an emergency.
I just wanted go add that my doctor admitted me straight to the hospital. I have been in since Tuesday morning. Sicker than I thought. Thank you for reading and I hope to update you soon with sone positive news! Heart sunshine!