My apologies, It’s been a while since I’ve updated here. I’ve been holding steady for the most part lung wise. I’ve had my normal ups and downs but ultimately I’m steady. More recently I’ve been dealing with bad asthma flare ups. I’m currently on a long prednisone taper hoping to calm my tight airways down. I’m also using Xopenex (levosalbutamol) in addition to DuoNeb (albuterol and atrovent combo) along with Brovana (long acting bronchodilator), Pulmozyme (to thin out the mucus to make it easier to cough out), Buedsonide (inhaled steroid) and Yupelri. Yupelri is anticholinergic which is to relax the muscles around the airways so they can open up to help me breathe more easily. Brovana and Yupelri are both prescribed for COPD (chronic obstructive pulmonary disease) which has similarities to CF in lung issues. I also do the vest for airway clearance twice a day (morning and night) for 30 minutes each time. I don’t bring up much sputum when doing the vest, or at all in general, but the vest helps keep things moving around in there regardless.

We also decided to try Fasenra, an asthma biologic injection medicine last week. Faserna is a biologic asthma medicine we are giving a shot hoping it will help. I tried Dupixent (another biologic asthma injection) a year or so ago but it didn’t relive any of my asthma symptoms. I have eosinophilic asthma which means that I have a high number of eosinophils (white blood cells) in my airways which are causing the tightness asthma issue. Weather changes like big temperature changes and humidity really affect me when it comes to my asthma. Environmental allergens also don’t help. Dust and animal dander are not my friends either. I will give myself another injection of Fasenra at home 4 weeks from my first injection and another injection 4 weeks from the second injection. Then I’ll be at a maintenance dose every 8 weeks after that. We’re hoping this helps. My body doesn’t like to play by the rules and follow what should and shouldn’t work so it is very much a trial and error thing with me.

Next order of business is the lower back pain and left thigh burning pain that I’ve been having since December. After many tests and doctor appointments we discovered that I have a “large lesion” in my L2-L3 area of my spine. It is a “nerve sheath tumor” that is causing the pain. The mass is basically pushing the nerves out of the space where they should be therefore causing the pain. The L2-L3 area nerves are what sends the feeling/sensation to the front of the thighs so it makes sense. These type of masses are typically non-cancerous and slow growing.

I also have an annular fissure in my L4-L5 area. When an annular fissure occurs, the fibers either separate or break from the bone they’re attached to. Most annular fissures are asymptomatic, but some can be painful and cause other symptoms like back pain, discomfort, tingling or numbness in extremities. Lastly, I have a bulging disc in my L5-S1 area as well. So basically my back is a little messed up. haha.

I’m being referred to a spine neurosurgeon to get assessed for surgery to remove the lesion in my L2-L3. I’m hoping that will get me pain free or at least in a lot less pain because coughing and sneezing are very painful. I’m just happy to have an answer as to why I’ve been in so much pain and that there is a possible fix. I’m not worried or concerned about it, I just want it fixed.

Back to the ol’ lungs, I have my 6 month pre-transplant checkup in September. I’ll post another update after those appointments.

Until next time…