So much had been going on these last few weeks. I want to start by saying that I’m so grateful to my donor for my new lungs. I’d make the same decision again to have the surgery because my quality of life has greatly increased. I honestly thought that at this point (almost 1 year) my body would have settled down and I’d be free of extra therapies and extra meds.

On June 10th I was admitted to the hospital for the first time since Sept. That’s my longest stretch of time without a hospital stay in at least 5 years. I had been having fevers over 100° for a few days. I finally called my team when I was having chest pain and shortness of breath. Instead of admitting me straight to a private room, I had to wait in the ER for 12 hours while we waited for a room to come open. Luckily, Nick was able to be with me during this ER visit. Because it was late enough (10pm) and the hospital was short-staffed, I got to take an ambulance from the ER to the inpatient side of the hospital. No lights or sirens, but still a crazy experience. I was in a real room a little after 10. No visitors allowed and I couldn’t leave my room.

In the ER I tested negative for Covid-19. My chest x-ray confirmed I had pneumonia, most notably in my lower right lobe. I was later told that during my bronch the prior week, they had been unable to open my airways in that section due to inflammation, so they weren’t surprised. Would have been nice if they told me so that I would know earlier that there was a brewing infection. I was started on 2 IV antibiotics and an iron infusion while inpatient.

On June 12th I had an early morning bronch with the surgical team (the same doctor that performed my lung transplant). They decided to place a stent in my lower right lung to keep that airway open. Because the stent is a different material than lung tissue, I need to do some work to make sure the stent stays clear. I’m now nebulizing 3 new medications: mucomyst to keep the mucus from sticking on the inside of the stent while smelling like rotting eggs; hypertonic saline to thin the mucus and make it easier to cough up; colistin is another antibiotic to kill the bug in my lung. After the bronch, my throat was so sore and all I wanted was a smoothie. The kitchen in my part of the hospital has a freezer malfunction. From Friday through Monday when I was discharged, they had a imited menu (no meat, cheese, dairy, ice cream). The worst!

I was discharged on Monday, June 15th. Sent home with the 3 new nebulizer meds (takes about an hour to do all 3, done 2x day), 2 weeks of IV antibiotics administered every 6 hours (good bye sleeping), and an iron infusion done every other day by a home health nurse. The iron infusion had to be done with a nurse present to watch for any terrible side effects. To do the IV antibiotics, I had to hang a bag of the medicine on my IV pole and then wait the 30 minutes for it to infuse. But it wasn’t always 30 minutes, so you can’t fall asleep while it happens. If you let the air bubble get into the line, there could be serious issues. Just a very stressful thing, especially when you’re a little sleep deprived from waking up after only 5 hours.

I had a clinic appt the week after I was discharged and I had my highest ever pulmonary function test or PFT. So, something we’re doing is working. I’m breathing better than ever! Unfortunately, a few days after I stopped my iv antibiotic, I started spiking a fever again. My team started me on another 2 weeks of another IV antibiotic called zosyn.

I had a follow up bronc of June 29th with the surgical team again. I didn’t talk to anyone afterwards about the status, so I’m assuming no news is good news. I’ll have another bronch soon to check on how the stent is doing and if/when it can be removed.

I wish I could function without these non-stop antibiotics. I feel in a lot of ways, my treatment before and after transplant are about the same: constant IV antibiotics, 3 nebulizer meds twice a day. It’s a good thing I have nowhere to be, because my life is revolving around these constant meds. I keep reminding myself:
-I can breathe without supplemental oxygen!
-I can walk my dog around the neighborhood and not get winded!
-I could be in the hospital instead of doing these treatments in the comfort of my own home, my own bed, my own food!
-We have insurance that covers the weekly home health nurse visits, constant medications, constant doctor appointments!
-We can only control what we can control!

Thank you all for reading this far. I know I can come across as negative, especially when I’m describing all the things I’m doing, but I promise I’m happy to be here. One day at a time!