CF Happens

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

recent posts

  • IVs in October…what a surprise 🙄

    Looks like I’m keeping the “being sick in October” tradition going…44 years strong. It never fails, I end up sick and on antibiotics pretty much every October.

    I started having pleuritic pain (pleurisy) in my upper back about a week ago. Pleurisy is when the pleura (two large, thin layers of tissue that separate your lung and chest wall) becomes inflamed. (See picture below) One pleural layer of tissue wraps around the outside of the lungs. The other pleural layer lines the inner chest wall. Between these two layers is a small space (pleural space) that’s usually filled with a very small amount of liquid. These layers act like two pieces of smooth satin gliding past each other, allowing your lungs to expand and contract when you breathe. If you have pleurisy, these tissues swell and become inflamed. As a result, the two layers of pleural lining rub against each other like two pieces of sandpaper. This causes pain when you breathe in and out. It’s constant sharp pain because of course you can’t take a break from breathing so that it won’t hurt. Coughing and sneezing hurt like heck as well.

    The cause of pleurisy is usually an infection, viral (example: flu) or bacterial (example: Pneumonia or in my case the pusedomonas that I culture in my lungs all the time). The treatment for pleurisy is to treat the infection and pain control.

    I had a Telehealth appointment with my CF clinic today. I will be starting IV cefepime (2g) every 8 hours for 14 days. IV push is how the medicine is given. The medicine is in a big 30cc syringe, I push it into my accessed port slowly over about 10 minutes, then flush with saline and heparin. I’ve had people ask if I have to stick my port every time I get a dose (every 8 hours), no I do not. I will get my port accessed tomorrow. The infusion center will put a huber needle (see picture below) into my port, cover it with tegaderm. It will stay in there for a week. Then I go back to the infusion center to get more labs and get the needle switched out for a new one for the second week of treatment. The more often you access your port, there is more risk for infection.

    This is a huber needle. I use a 20G, 3/4 inch.

    I did spirometry on my home spirometer. They were not good, which I expected because of the pain when I breathe. My FEV1 was 29%/0.78L. My first two tries were 27% and 28%. Last time I did lung functions was at my transplant check up a month ago and they were 32%.

    I don’t feel great in general, on top of the pain, so it’s better to do IVs now. I’m also starting a prednisone taper at 60mg for 5 days and working my way down. Fingers crossed that I start to feel better ASAP!

    Until next time…

  • 6 Month (Pre) Transplant Checkup (Bonus Neurosurgeon Appt. Update too!!)

    I added “pre” because I’m NOT listed for a lung transplant yet. Some people get confused when I say I have/had a transplant checkup. These 6 month checkups are so they can put eyes on me, as well as doing the necessary maintenance testing like labs, chest X-ray, 6 minute walk and PFTs. This keeps me up to date on everything so that in the event I have a drastic decline and need to get listed ASAP, it will expedite getting listed. It will save time in the listing process with not having to backtrack and do ALL of the testing.

    Now to the details. First appointment was for labs and chest X-ray. My lab results were in the patient portal within an hour. All were good!! The chest X-ray is just to make sure there’s no big changes, which there isn’t.

    Next appointment…6 minute walk. I have to do the 6 minute walk each time to see how I’m oxygenating and to see if I’m staying steady on distance walked. They want to see if I can maintain my oxygen level while walking. I’ve never really had a problem with keeping my oxygen up, except for times when I’m having a CF exacerbation (actively CF sick) or when I’m having a bad asthma flare. Most people assume I should be on oxygen or that it would help me with how crappy lungs are and with being at 32% lung function but having crappy asshole lungs doesn’t automatically mean oxygen. I walked 1,076 feet with no stops and didn’t need any oxygen. My O2 stayed at 99%. Last appointment in March I walked 1,176 feet with no stops and no oxygen needed. So that’s steady!

    My lovely head attire for my 6 minute walk!

    Next appointment was for PFTs (lung functions). My best was FEV1 32%/.89L. So that’s steady too!! My ABG (arterial blood gas) which is a tiny needle stuck in the wrist in the artery to get blood directly. That test looks at the level of oxygen, carbon dioxide and the pH. All was good there too!!

    Final appointment was with the transplant doctor. I like the doctor I saw. I’ve seen him before. You never know who you’re going you see sometimes. Haha. Consensus is…I’m holding steady which is great! As I’ve said before, the goal is to use up my original lungs before getting new ones. Statistics for survival rates after lung transplant have gotten better over the years of course as treatments have gotten better. With that said, it’s still best to use up my original lungs for everything they have to give. Getting a transplant isn’t a quick fix to having better lungs and breathing better. Yes, it sounds like a good idea but the goal is to be alive for as long as possible therefore I will squeeze out every ounce of life my original lungs THEN get a new set of lungs and keep on living for as long as possible!

    I told the doctor all about “Pete” the peanut in my L2-L3 that will be evicted soon. Speaking of…I FINALLY have an initial appointment with the neurosurgeon to talk about surgery. That appointment is October 17th. Yes, it’s a ways out but at least I now have an appointment on the books! What’s a little more time when I’ve been hurting for multiple months. I’ve survived this long. I got this! Haha

    The short update is, I’m steady and maintaining so keep doing what I’m doing. I go back in 6 months for my next checkup.

    Until next time…