CF Happens

I’ll try to keep it short as possible but there’s a lot of details to shove in here to make sure you all are in the know. The weekend in lock up was boring as usual. Nothing gets done on the weekends unless it’s an emergency.

I saw my regular CF doctor this morning, which is always nice because he knows me and what I need unlike the hospital pulmonary team who doesn’t see me regularly. He ordered an echocardiogram to make sure my heart is pumping like it should with the persistent shortness of breath. He also ordered a VQ scan. A VQ scan is a ventilation/perfusion lung scan to look at circulation of air and blood in the lungs. It checks for blood clots (pulmonary embolisms) which shortness of breath is a side effect of blood clots in the lungs. During the VQ scan you inhale a radioactive gas and they inject a radioactive substance and take different pictures of your lungs. The report for the VQ scan said it showed no blood clots. It did show air trapping in the upper lobes (not moving air out as well) which is consistent with my Bronchiectstasis (widening of bronchi/branches/airways) that I’ve had for awhile, along with volume loss in the upper lobes which was consistent on my recent chest CT as well. Bronchiectstasis is usually caused from repeat CF exacerbations where mucus and bacteria build up and kinda wreak havoc. I haven’t gotten a report on the echocardiogram yet.

I did lung functions and they were the same as Friday, 29%/.80L. So no improvement as far as the numbers go but we also take into account how I’m feeling, not just the numbers. I’ll take no worse though. I am feeling less tight and wheezy and according to respiratory therapy and my doctors, I sound better as well. I am still getting short of breath when I’m up doing things but I’m recovering ok. I’m still on room air (no oxygen) and sating around 95%.

The plan is for me to go home tomorrow and finish IV zosyn (infused every 6 hours over 30 minutes via IV ball) for a total of 14 days, to finish on the 20th. I will have a clinic appointment (with in person lung functions) or telehealth appointment (with home lung functions) on the 20th to discuss if I should continue another week for a total of 21 days or to be done at 14 days. They switched my steroid to 60mg oral prednisone starting today. The prednisone taper will look like this…60mg for 3 days, 50mg for 3 days, 40mg for 3 days, 30mg for 3 days, 20mg for 7 days and 10mg for 7 days. He said he would decide on how the 20mg and 10mg part looks later depending on how I’m doing.

My home health company has already called so I could give them the “go ahead” on filling the antibiotics. They have to verify that I am ok with paying the out of pocket cost that my insurance doesn’t cover. They will get the final “ok” to fill the antibiotics tomorrow morning when they start my discharge orders. I will be released and home health will deliver my meds and supplies to my house. I think I got it all covered. I’ll update about the echo with my next update after I get home and settled when there’s more to update.

I have had a few people ask what all this means as far as transplant goes. I’m still holding steady in the big picture of things. I have been hanging around 30-32% lung function for the past 6 or so months. Yes, my transplant center pays attention to how low my lung functions get and stay but they also take into account other things like not being able to bounce back as easily from CF exacerbations, running out of antibiotic options, limited antibiotic/treatment options, quality of life, oxygen needs, number of hospitalizations, etc. So we are still in the “wait it out” stage to see where things are in regards to transplant. We will be keeping a close eye on things and will contact my transplant center if needed. Thank you so much for always checking in on me, I appreciate all of your support very much!

Until next time….