I've been sick twice following my lung transplant. The first time was in February of 2015, a little over a month post-transplant. I contracted a Coronavirus. My body couldn't handle the virus, so it attacked my lungs and I had a moderate/severe acute rejection episode. Through self monitoring and close communication with my Team, we caught the rejection early and were able to stop it before there was any damage to my new lungs.
There were a couple things going on that led to my most recent hospitalization. First, and probably foremost, is my return to work. Medical expenses are a big part of our finances and I found a job to help make ends meet. With my compromised immune system, working in close contact with people is not a good idea so I found a job that seemed perfect. Light janitorial and cleaning the sidewalks and garages of an Uptown Dallas shopping district. It turned out to be too much work for my body, even though I have gotten back into pretty good shape. I was walking 15,000 steps/day on the job, mopping and pushing heavy things. There was lots of squatting and time out in the weather. This extra load on my body drove my suppressed immune system much lower than what my Team shoots for with my meds. My white blood cell count was less than 1 when I went into the hospital.
Once you have a lung transplant, you are bonded with your Team pretty much for the rest of your life. There is always a number you can call and know someone will answer, and a protocol on when you need to call. The day I ended up in the hospital started out like any other work day. On the job by 6:00 AM, got my janitorial duties done and did my outdoor work. By the end of the day I was getting a little dizzy when I stood from wiping low windowsills. I thought I was just a bit tired and finished up my work. I take my vitals twice a day checking temperature, blood pressure, pulse and lung capacity. I had a slight temperature, 2 F above normal, at evening vitals. Not enough to warrant a call to the Team. This was at 8:00 or so. When I went to bed at 9:00 I started in with the teeth chattering chills. By 10:00 I became violently ill, and my temperature was way above the threshold for calling the Team. I called, was told to get to the ER, and off we went. By the time we got to the ER I couldn't hardly walk on my own. By the end of the night I was on my way to the ICU with two nurses squeezing my saline IV, forcing liquids into me as fast as they could push them. A third nurse got a pressure cuff to put around the IV bag to force the liquids. I guess I went a little septic and was very dehydrated.
The cause of all this drama? A minor urinary tract infection and a very compromised immune system. This shows just how fast a virus or infection can run rampant in your system when you are on anti-rejection drugs. Self monitoring is a very important part of post-transplant life. We will get sick, getting care early is vital in helping keep our lungs healthy and keeping us alive. So if you are reading this, and have been slacking on keeping up with your daily vitals, get back at it.
There is a wing at UT Southwestern hospital just for heart/lung transplant patients. No matter where I am at, if I end up in the hospital, I will sooner or later end up there. This is part of my Team, and they have the experience with keeping us transplant recipients alive. I might feel comfortable at National Jewish in Denver or Stanford University hospital in California, but UTSW is my home.
Today was my post-hospital followup with the Team. When I left the hospital my blood chemistry was not yet stable and my immune system was trying to reach an equilibrium so the Team cut way back on my two major anti-rejection medications and two of my specialty, daily, antibiotics. We raised the dose of one of my anti-rejection meds up to half normal and have a plan to get my specialty antibiotics normalized over the next few weeks. That makes me feel good. Being on a reduced dose of the medications that keep me alive is a bit disconcerting.
At today's visit I saw a doctor who is usually working on the hospital floor. She was pretty amazed with my lung function. I set a new personal record with my Pulmonary Function Tests today.
My FEV1 (basically the amount of air I can forcibly expel in the first second of an exhalation) was 116% of what is predicted for a healthy male of my age/weight/race and height.
My FVC (basically my lung capacity) was 104% predicted.
These really are awesome numbers for a transplant recipient who had Idiopathic Pulmonary Fibrosis (IPF).
I'm working on regaining the strength I lost over the past few weeks and as soon as my blood chemistry settles out, and my medications are back to normal, I'll be good to go