CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Thigh Pain Saga Continues…

    Here’s a quick catch up on the burning pan I’ve been having in my left thigh since December, after receiving the Reclast infusion… We first treated the burning thigh pain as an adverse reaction to the Reclast infusion with a long course of Pepcid (for it’s antihistamine properties), Prednisone and Aleve considering it started about 3 days after the infusion. The burning pain never went away. Next step was getting an X-ray of my left hip and thigh (checking the boxes), I knew it wasn’t going to show anything, and it didn’t show anything. Next up was a MRI of my left hip and thigh. The MRI showed a moderate labrum tear in the hip and some arthritis. I have no idea how I tore my labrum. I feel like I would remember a fall or something that was bad enough to tear my labrum. haha. That brings us to today’s appointment with ortho.

    The ortho doc wanted another X-ray view of my hip and a view of my pelvis, so I did that in the office before I saw him. He watched me walk. I have no limp or difficulty walking. While I was standing he pressed on my lower back and hip to see if there was pain, no pain. He manipulated my hip while I was sitting to see if one movement caused more pain than another, no pain. My hip isn’t what hurts, it’s my thigh. I asked if he thought this could be deferred pain from the labrum tear. He said possibly but not likely. I asked if he thought it could be nerve pain, he didn’t seem too convinced about that one either (probably because he’s a bone/ligament guy haha).

    The PA did a steroid injection in my hip as a diagnostic tool to see if it relieves the thigh pain at all. I go back in 3 weeks for a follow up to discuss if the steroid injection helped at all and what his thoughts are on the next step. In the meantime, I’ll be reaching out to my PCP to ask about getting a referral appointment with neurology to see what their thoughts are on it possibly being nerve related and treatment options. The burning pain is always there but gets worse randomly. Sitting in the car is when it hurts the most. Ibuprofen and Tylenol doing nothing for the pain. This random burning thigh pain is par for the course for how my body acts. There is no explanation on why my body does the things it does. My body doesn’t play by the rules. haha. I’ll update when I have something to update.

    CF RELATED UPDATE: I’ve had an increased cough for about a week or two and a sore throat. I’m assuming the sore throat is from sinus drainage but I’m not blowing anything out and not getting anything out with sinus rinses. It’s probably just a good ol’ cold, covid test is negative. I have CF clinic May 16th.

    Until next time…

  • My body is rebelling yet again

    Last Monday sharp pain started on the right side on the front of my chest. I carried on with my transplant appointments on Tuesday. The pain got worse as the week went on. I powered through our very busy weekend with friends in town. Sunday morning I sent the “white flag” message into my CF clinic diagnosing myself with pleurisy and asked for antibiotics and prednisone. Ya know, if I had my own Rx pad it would save me a lot of time sending messages to my CF team and at the doctor’s office for appointments. Pleurisy is inflammation of the area (pleural space) that separates the lungs and chest wall. The pleural space is usually filled with a satiny liquid that allows your lungs to expand when you breathe. If that liquid is not there and there is inflammation/swelling, they rub together like sand paper that causes pain when breathing. Since I can’t take a break from breathing, the pain is always there until the pleurisy resolves. The pleuritic pain is sharp/stabbing pain with deep breaths, coughing (ouch) and sneezing (double ouch). 10/10 would NOT recommend!! Treatment for pleurisy is pain control and treat any underlying infections that may be the cause.

    My nurse called me this morning to tell me she wasn’t ignoring me but that she was trying to figure out who could see me because my doctor was cruising somewhere in the pacific at the moment. Of course he is. It never fails, when I actually need to be seen because of an exacerbation (actively sick) or end up in the hospital he is on vacation. haha. She said she did hear crackling in both lungs.

    One of the nurse practitioners was able to see me this afternoon. We decided that I’ll do 14 days of IV antibiotics (Zosyn 4.5g every 6 hours) and a prednisone. I’ll get labs drawn each Monday until finished with IV course. We go to Cancun VERY soon so this will get me 14 days of antibiotics in my system with a few days between finishing and leaving for Mexico. It seems like this is par for the course when it comes to my body not playing by the rules, especially when I have a vacation in the very near future that I’m trying not to sick for and not be miserable for.

    Update on the burning in my leg: My left thigh (femur) has had a burning sensation since I received the Reclast (osteoporosis med) infusion December 11th. Most reactions to Relcast present in the hip or jaw and for the most part resolve in about 2 weeks. I apparently like to be in the “less than 1%” club when it comes to side effects. Once again my body likes to keep my medical team on its toes. I did get a X-ray of my left thigh, it showed NO abnormalities as expected. Next step is a MRI which I’m waiting to hear when that is scheduled for. They are checking for avascular necrosis which is the death of bone tissue due to lack of blood supply. Common causes of AVN is extended use of high dose steroids, extended excessive amounts of alcohol consumption and long term use of bisphosphates (like Reclast, Prolix and Fosamax). I have taken high doses of steroids but not extended use. I’m not a drinker. I took Fosamax for the recommended 5 years and only had 1 infusion of the Reclast. So who knows where this pain is truly coming from. I would just like it to stop or at least be controlled and be more tolerable. It is so uncomfortable sometimes that I can’t sit still be I need to be moving (which is not ideal when in the car) so that I’m not thinking about it 100% of the time. So we shall see what comes of the MRI.

    Until next time…