CF Happens

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

recent posts

  • 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…

  • Thigh Pain/Lower Back Pain Update!!! We have answers!!!

    LOTS OF INFO AHEAD, STAY UNTIL THE END

    It’s been about 8 months since the burning pain in my left thigh started. My lower back has also been hurting more recently. My lower back has always had an annoying tight/pulling pain but it has been constant and much more annoying in recent months. Coughing and sneezing are painful. If I don’t brace myself well enough, it is stabbing sharp shooting pain and you know I cough ALL THE TIME! Haha.

    After my EMG findings of L4-L5 damage, my primary doctor referred me for a lower lumbar MRI. I finally had that MRI. After the findings (which I am about to share), they wanted another lower lumbar MRI with and without contrast to get a better visual on what’s going on.

    Much to my surprise…I have a “large lesion” in my L2-L3 neural foramen space, which is the opening in the spine where the spinal nerve roots exit the spine and connect to the rest of the body. The lesion is called a “peripheral nerve sheath tumor.” It’s a mass of the nervous system. “Tumor” is just another word for a mass or lesion. Just because they used the word “tumor” in the report doesn’t mean it’s cancer. Please, don’t freak out!!! It is a slow growing mass. These type of masses pop up out of nowhere and aren’t usually cancer. When the mass is removed (more on that below) it will be sent to pathology to be tested. I’m not worried about it being cancerous at all.

    Diagram of the different sections of the spine. L2-3 is where the mass is. L4-5 is where I have past damage. L5-S1 is where the bulging disk is.

    The mass is 2.4cm x 1.7cm x 2.0cm which is about the size of a single (out the shell) peanut (give or take). Here’s a visual if you’re a visual person like I am…

    Basically the mass is compressing/consuming the nerves which is causing the pain. I was not expecting a mass/lesion on my spine at all to be causing these issues. I also have “foraminal stenosis” in my L5-S1. Which means that area is blocked and there is a bulging disc in that area as well.

    The damage in my L4-5 is an annular fissure. When a fissure occurs, the fibers can fray, break or separate from the bone. I’m not sure how that damage occurred. It could just be degenerative (thanks to CF) or a trauma of some sort.

    It’s a blessing that the mass is in my lower back. A lot of times these type of masses are found “on accident” during a chest CT looking for other lung issues. Those masses are in the “thoracic” area which is by the lungs. (Refer to the diagram above) Those are a much more invasive surgery having to navigate the chest/lung wall for someone with CF. I’ll take lower lumbar mass removal for $1000 Alex! (In my best Jeopardy contestant voice) Haha.

    Of course, it’s not the news I wanted but I’m happy to have some answers as to why I’ve been in so much pain. I kinda feel vindicated because at times I felt like I had to convince doctors/medical professionals I wasn’t making it up. It in fact, is NOT all in my head. Once again, the thigh pain starting 2 days after the Reclast infusion was purely coincidental, not linked at all.

    I’m being referred to a spine neurosurgeon to talk next steps which will be surgery to remove the mass. I will hopefully hear this week when that appointment is scheduled for. Thanks to CF, I will be admitted a few days before surgery as per usual when having a planned surgery to get started on IV antibiotics and attempt to get my lungs as good as they can get before going under anesthesia. From what I’ve read, my recovery from surgery will be 4-6 weeks before returning to normal activity. Of course, my normal activity is not what normal people’s activity is so I should be good to go in those 4-6 weeks. Haha.

    I have A LOT of worriers and over thinkers that care about me in my life, so I chose to wait to share an update until I had solid answers. I’ve said it before and I’ll say it again…if I’m not worried, you don’t need to worry. I don’t typically get nervous about medical stuff in my life. It is what it is. Can’t change it. I just go with the flow and do what needs to be done. Giving up is NOT an option.

    Until next time…