Written by patient and advocate John Torrence
So I take my new IV machine home, along with two types intravenous medication, one to be injected twice daily through the machine and the other delivered through pressurized bottles not needing to go through the IV machine three times weekly. In addition, I need to take 500 mg of an oral medication daily. The long list of potential side effects include all sorts of gastro-intestinal discomfort and potential hearing loss. Through my own research with Dr. Google, the first intravenous medication was the hot new drug that stood the best chance of success, so I was happy (in a weird, medical sort of way) that the doctor had chosen to give me the cutting edge medicine. The second intraveneous medicine is an old school antibiotic not used very often in modern times, but it is the most effective medicine with NTM, from what I have seen so far. It is also the medicine that directly threatens my hearing. I do remember the doctor saying I would need a baseline hearing tests, and follow up tests every few months. Essentially, he gave me a choice between hearing and breathing.
With the Peripherally Inserted Central Catheter (PICC) line installed, machine plugged in, bathroom taken over by cases of medicine and supplies, I am ready to finally fight back against this crazy disease that has plagued me for three years. I am determined to take every dose of medicine and follow every bit of advice. Within a week, I find that the hot new medicine really throws my digestive system for a loop. I am begging the doctor for anti-nausea medicine and spending lots of time in the bathroom. Let's just say that food doesn't spend a lot of time inside of me. The course of treatment for this medication is eight weeks, so I perservere.
When you have a PICC line, you see the doctor every week, plus have weekly bandage changes. The place where the PICC line goes into your body needs to be kept dry and sterile, and requires daily attention. The PICC line needs to be flushed daily with saline, even if you are not taking any medicine. Due to the toxicity of the drugs, I also had twice weekly blood tests. Essentially, half of my waking hours involved dealing with medicine, doctors, machines, pharmacies, and bathrooms.
In my spare time, I started making phone calls. I had insurance for medical coverage in Hawaii, and I needed to see if National Jewish Health would accept this insurance for payment, and how that would work. It turns out the biggest problem was the five hour time difference between Hawaii and Colorado. Well meaning administrators from both organizations kept leaving messages for each other without ever making a connection. After a few months of this, I finally got them together, and my insurance agreed to pay for National Jewish to do a diagnostic workup on me.
While all this was going on, the first intravenous medication was taking its toll. My Infectious Disease (ID) doctor heard my weekly reports and asked me if I wanted to quit. I told him I was in this for good, and if this is the best medicine, then I would take it. After eight weeks, he had the PICC line removed and gave me a break from the meds. And he explained that no one lasts eight weeks on that medication.
After a month without drugs and without a PICC line, I flew back to Oahu to get a new PICC line, and started taking a different intravenous medicine. Instead of taking the old medicine intravenously, I now took it through a nebulizer, breathing it directly into my lungs at night. I was told the nebulized medicine is less toxic to my hearing.
Prior to going to Denver for my diagnostic workup at National Jewish Health (NJH), my local ID doctor had prepped me with the coment that if NJH agreed with his recommended surgery, that it could be performed in Oahu when I returned from Denver.
NJH is a well oiled machine when it comes to dealing with lung patients from all over the country. You first speak with a nurse by phone to review your history. They then send you lots of forms to fill out. They want copies of all your relevant tests performed by your local doctor. Finally you get scheduled for a week of outpatient appointments. I started my phone calls in April, 2012, and went to NJH in September. I was assigned to a day room and had a roommate, another middle aged white guy with lung problems. We had lots of time between appointments to compare notes on symptoms, previous care, cafeteria food, etc.
NJH repeated many of the tests that I had previously completed for my local doctor. They also gave me a series of exams and interviews. I arrived early in the week, and on Friday, the entire NJH team evaluated my test results and announced a plan for me. I definitely needed surgery – the right upper lobe of my lung is filled with Bronchiectasis, and no amount of drugs will keep it clean. NJH proposed to remove it through a remotely operated surgery called VATS, which is an acronym for Video-assisted thoracoscopic surgery. Since I had already been on IV medicine for five months, they decided I should have the surgery immediately and they wanted their own hand picked surgeon, Dr. John Mitchell, to do the surgery at University of Colorado Hospital, only a couple miles from NJH. I explained that I had no way to get my insurance company to buy in to this new expense, and they said they would work it out with them directly. The key thing was that NJH did not want a surgeon going in and pulling out infected tissue the same way they pull out a cancerous lung, because it would infect my entire insides. I hadn't thought of that!
I was scheduled for surgery the next Thursday. All of our travel plans had to be changed. We met with the surgeon and prepped for surgery. The idea was that I was to have surgery on Thursday, leave the hospital on Saturday and fly home the next Tuesday. As it worked out, my lung took a little longer to heal than anticipated, so I was in the hospital until Tuesday and flew home on Wednesday, after NJH gave me a final pre-travel physical. I had three small incisions on my right side, where Dr. Mitchell inserted his tools. He did not need to open me up in the front or back; no rib spreader, no broken or cracked ribs. Recovery was relatively quick. Within three weeks, I was back to mowing my own lawn.
I was concerned about the volume of lung being removed. I understand that the upper right lobe is 23% of the total lung volume. Various doctors told me that the lungs are like underinflated balloons, and when one lobe is removed, the other lobes will inflate to fill the space. In the end, I did not lose 23% of my breathing capacity. I would guess my loss due to surgery was more like five to ten percent after initial recovery.
As much as the physicality of what was happening to me added tension to my daily existence, it also put a greater burden on my family life and personal relationships. The stress of rare disease, prolonged diagnosis, remote hospitalization and sudden decision for major surgery tends to add a lot of stress to everyone in a family, so it is important that decisions and next steps are discussed with those closest to you in advance and that you work together for a common goal.
John will continue sharing his journey with us. The next part of his story will discuss National Institutes of Health (NIH) –NIH is doing a family study on genetic connections in Bronchiectasis. John and his mom were enrolled into study, with a three-day inpatient workup. NIH discovered various health issues and took a comprehensive approach to working on them.
The COPD Foundation advises that before you make any changes to your medication or therapies that you first consult with your doctor. The COPD Foundation recognizes that everyone’s experience is unique, and this is John’s experience.