In early February, my white blood cell counts were dangerously low. We discontinued a medication that suppresses my immune system, but the white blood cell count continued dropping. It’s one thing to have my white blood cells low enough so they don’t know to fight off my foriegn lungs. It’s another thing to have my white blood cells so low that they are literally fighting nothing at all. At that point I needed an injection called Zarxio. You may have heard of Neupogen, but that brand name isn’t covered under my health insurance. Zarxio does the same thing: to stimulate the growth of neutrophils, a type of white blood cell important in the body’s fight against infection.

The injection is similar to an insulin shot in that it needs to be injected subcutaneously, but different in that the needle is 10x longer. After 5 minutes of hovering the needle over my stomach, I finally worked up the courage to inject myself. Phew, that was difficult. However, the hard part actually came about 12 hours later. Because the shot encourages production of bone marrow to make new white blood cells, my entire body ached. All of my bones hurt and it was difficult to move, or lay still, or breathe. Luckily, the pain lasted about 24 hours and then that was it. I had my blood levels checked 2 days later and everything was back within range.

In mid-March, I had a transplant clinic appointment and my pulmonary function test scores were the highest they have been. If you are new here, I have transplant clinic visits every 2-3 months. A pulmonary function test measures how well my lungs are working and how much volume they can hold by taking a large inhale and then a long deep exhale out. Before I received my transplant, each PFT brought so much anxiety and fear. My numbers were consistently decreasing and I coughed for so long after each long exhale. So exhausting! But now, my numbers are consistently increasing and I don’t cough afterwards. It is relieving to say the least.

While my team doesn’t really care about the actual percentage of my PFTs, they care that the number is remaining the same or increasing each time. If I consistently start having decreasing numbers, early intervention is vital to keep me from going into rejection.

My last bronch was in the beginning of February. My next broch isn’t for nearly 2 months later! That is a huge deal for me! First, the fact that my PFTS still increased without my lungs recently being cleared out is pretty fantastic. And secondly, I haven’t had to waste an entire day in the hospital or at home recovering from the anesthesia. Not having to be a full-time patient is so less time consuming. Hopefully the bronch next week will prove that it was ok to wait 8 weeks in between procedures. 

Hopefully, the surgeon that performs my bronchs can discuss removing the stent in my lungs. The stent has kept my airways open for longer and has likely contributed to me not needing to have the procedure as often as before. However, the stent is not made of lung tissue, so mucus can grow on this foreign material. To keep the stent open and free of mucus, I still have to do breathing treatments. It takes hours out of my day prepping the medications, doing the nebulized treatments, and then washing the equipment. In theory, if the stent is removed, I would no longer need to do breathing treatments. Before my transplant, I needed to do these breathing treatments to clear the excess mucus from my lungs. Now, I don’t have mucus in my lungs to worry about getting up and out. I’ll find out at the end of next week.