CF Happens

Today was clinic day which are long days but I’m used to it. I’m a professional waiter after all these years of all day or half day appointments. First stop is always pulmonary lab to do lung functions. Today my FEV1 was .87L/32%. The last time I was in clinic in October, they were 34%. My last home spirometry in January, they were 30% which was during a time of a lot of tightness and shortness of breath. They are basically steady. I’ll take it.

Next stop is clinic for the parade of people…nurse, pharmacist, PA (physician assistant), social worker, dietitian, PT and finally the doctor. My blood pressure has been running on the higher end of normal for a while, today it was ok. My weight is down 2 pounds which I’ll take!!! Apparently their height measuring equipment is off because according to them I have shrunk about a half inch. I’m not old enough to be shrinking already! haha. I am going to start taking Yupelri (Revefenacin) which is an inhaled COPD med. Yupelri is a long-acting bronchodilator that basically is supposed to open the bronchial tubes and increase the air flow. It is NOT a quick acting med like albuterol which you take for tightness and wheezing with asthma.

I’ve been getting random bruises without bumping into anything because my body likes to be difficult. I am getting more labs drawn in March when I get my port flushed because it’s much easier to draw them while I’m accessed for the monthly port flush than get stuck in my hand which is the only place left to go. We will be looking at blood counts, anemia markers, vitamin levels, B12 among some other things.

I’ve still have intermittent burning in my left thigh since getting the recast infusion mid December. There is a section of the outside of my left thigh that is numb as well. They are thinking the numbness and burning are an indication of a nerve problem, possibly sciatica. My CF doctor messaged my primary doctor to ask her thoughts on the numbers and burning sensation in my thigh. I now have an appointment with my primary doctor next week to discuss that. Needless to say, recast is now on my “allergy” list because of the side effects. I asked about Prolia, another osteoporosis infusion med, as another option. The pharmacist said she doesn’t want to do that just yet because once you stop it you lose all your gains in bone growth and I can’t be on it forever. There’s just not a lot of research on osteoporosis in pre-menopausal women needing bisphosphates (osteoporosis meds). As per my usual, my body doesn’t play by the rules and keeps my doctors and care team on their toes and tests their diagnostic/treatment skills. We have time to do more research and get a plan in place because my next infusion is not until December.

Before we started talking all things CF my doctor asked how things were going outside of CF and if we had any fun trips planned. I said, “well yes we do have a fun trip to Cancun coming up.” He said, “do you need anything for that trip?” I said, “like what?” He said, “well I was thinking a script for antibiotics and prednisone in case you were to get sick and need it while in Mexico.” Well of course I need that!! Done and done! I love that guy for planning ahead!

All in all it was a decent appointment. I have another appointment in 3 months for a regular check up. We shall see what my labs show and if they give any answers. I also have transplant clinic in March so I have to look forward to. Taking of me is a full-time job. I just wish it paid better!

Until next time…