My Illness: Hospital Time
This post is the fourth in a series on my Necrotising Aspergillus Pneumonia illness. Where have I been? On a journey, to say the very least. If you’d like to start from the beginning, start here.
I was admitted on April 25th. Who knew that was the last time I’d breathe fresh air for 12 days. The day after I arrived, they took another chest x-ray and found pneumonia in my other lobe. A day later they did a chest CT scan. My lungs were completely full – of something – they didn’t know what. After the fact they told me that for all they knew I could have had cancer. In order to find out what it was, they needed to do a lung biopsy. The doctors, my husband, and I agreed on a VATS surgery because of how sick I was. That was the most invasive procedure. My husband was told that I am lucky that I went in when I did – that the outcome could have been fatal.
During the surgery they made three incisions. The chest tube went under my right breast (8″ into my body!), and the camera and instrument went in under my armpit and under my shoulder blade. After the surgery I was moved to the Cardiovascular Intensive Care Unit (where I was for the remainder of my stay). I was told that I would get discharged as soon as there were no more bubbles coming from my chest tube. They said that it should only take a few days, but they give it two weeks. If at that time the bubbles hadn’t stopped, they’d need to crack open my chest. I was only a couple days shy of them doing that! Diagnosis: Necrotising Aspergillus Pneumonia. (Necrotising means that parts of my lungs were now damaged.) Aspergillus is something that everyone breathes in from outside – people don’t get sick from it. They had no idea why I did. It’s a very rare fungal infection in the lungs. I was told that recovery would be several months – M O N T H S (or so they thought). They told me that they were scheduling me to have a follow-up at National Jewish Health after my discharge to try and figure out why I got sick so that it wouldn’t happen again.
After the surgery I had a few more x-rays and a CT scan, was put on oxygen and put on a medicine to lower my heart rate which was continually high, but it was in the 140’s for a whole day at one point. I was having fevers daily. I would keep the air conditioning in my room down to 64 degrees. I would NEVER do that at home. Brrrrr. My husband loved it, especially since he stayed with me every night. My mucus also changed. It was freaky. It was hard and dark green and sort of looked like a pea!
The antifungal IV (Voriconazole) that they put me on has loads of side effects (like most meds do), My infectious disease (it’s not contagious) doctor warned me about visual disturbances. Here came the laser light shows! I would look at my bathroom where the door was cracked open, and see purple fluorescent light coming from it. I would look at the hallway where the door was cracked, and see green fluorescent light. Psychedelic! I was also hallucinating. My nurses thought that it was too much pain medicine, but it’s one of the side effects of the antifungal. It was strange. I would sit there and my eyes would drift shut, yet I would still be conscious. The minute my eyes closed, I would see things, almost like a dream, but then I would open my eyes right away, and I’d be able to tell my husband what I had just seen. My husband can attest that I wasn’t sleeping. Weird! Another strange thing about my eyes – I couldn’t keep them open most times. My doctors – and there were tons of them – would come into my room daily to see me. I literally would be sitting in bed without the use of the bed elevation, and my eyes would be closed. Daily I would tell them that they could go ahead and talk, that I was listening to them, but for the life of me I couldn’t keep my eyes open. My whole stay I was exhausted. God love my co-workers, but besides family and the many doctors (the surgeon with his entourage, pulmonologist, infectious disease, hospitalist) that were coming to see me sometimes twice daily, and the respiratory therapist who came 4x/day…
During this time, my brother was moving here (CO) from FL. My mom was to follow the moving van with my sister and niece driving the mini van. When mom heard that I was having surgery, she flew out to be with me. My youngest son, who was a senior in high school with only a few more weeks to go, was flown to FL to help with the drive. He wasn’t doing well in school and it was iffy if he’d graduate. I was told about this while a co-worker was visiting and I blew up! Months later she reminded me of it and confided in me that she would have been upset too.
On top of being thoroughly exhausted, I noticed that I had a voice mail from our landlord saying that they wanted to put the house we were renting up for sale. They wanted a realtor to come inspect the house two days from then. I was only 4 days into my hospital stay, the day after surgery. I broke down and cried! I called her right then to let her know what was going on. She told me to call her when i got home and we could talk about it. On top of all that, I was scheduled to shoot my four senior ambassador sessions during this time. I had never, ever, ever, had to cancel a shoot in my life. I was devastated! I had to call each of them so that they would know what was going on. They and their families were all so sweet about it. They told me to call when I was well again and we’d do the shoots then. They told me that they’d pray for me.
During my hospital stay I had a few more x-rays and 11 days into my hospitalization, my chest tube stopped bubbling. That same day I was surprised when a nurse came in saying that she was there to place a PICC line in my arm. I’m always the last to know! No one told me that was going to happen. A PICC line is threaded through your vein until it’s near your heart! You have to have your head turned, and not move an inch, while they insert it. The area must be completely sterile, so we all needed to be masked and hair nets needed to be on. I was told that the reason for the PICC line was that I needed to go home on IV antifungals (the Voriconazole), and a home health nurse would come by to help.
12 days after admission, as I was getting my discharge instructions, we were interrupted by a tornado warning. All of the patients needed to go into the hallway for safety, including me. What an exciting time (not). During discharge they told me that National Jewish Health should be contacting me to set up appointments.
The journey is not over! The next post will be just as entertaining. This entire series, which is still an ongoing issue, consists of separate posts in order to divide them into bite size reads for you. You can read the next post here.