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  • Surgery and a small Trikafta update

    Posted by jenny-livingston on May 18, 2021 at 10:00 am

    Last week, I had sinus surgery (which was my sixth, if we’re keeping count). I’m thrilled to report that it went very well – which is something I so rarely have the opportunity to say! Especially when it comes to my sinuses, I have always been a tricky case. However, this time, everything has gone better from a relatively short pre-op wait, to the procedure itself, to better controlled nausea and pain post-op, to an easy-breezy recovery up to this point.

    My ENT mentioned that he’s operated on very few patients since the CF population at my center started Trikafta. For those who’ve needed operations, he said the post-op healing process has been night and day difference. He believes that Trikafta helps reduce inflammation (by reducing mucus and infection) therefore creating a much better environment for healing.

    Whatever the difference is (I do credit Trikafta, but also the skill of my doctor and the attentiveness of the entire team that day) I am so grateful that this entire experience has been so much better for me than most.

    I don’t know if these Trikafta updates get repetitious or boring to read, but I never tire of sharing the ways in which my body and health are changing. I also wanted to share this quick surgery update and say that I am finally back to the forum full-time after splitting my time between projects for a while.

    If you are on Trikafta, how has it affected your sinuses/upper respiratory system? Trikafta or not, do you have CF related sinus disease? 

    paul-met-debbie replied 2 years, 10 months ago 4 Members · 8 Replies
  • 8 Replies
  • paul-met-debbie

    May 18, 2021 at 10:59 am

    That’s good to hear, Jenny! Always nice to read about your Trikafta experiences, especially good ones 😉

    My sinuses are behaving very well I must say, since my last surgery in 2002. That must have been my 10th or so surgery, so I guess by that time they took out the last bit of ethmoid I had left and nothing would grow anymore in the desert they created in my nose 🙂
    I always had a swift recovery after I found an ENT who had developed a technique for doing these surgeries under local anaesthesia in stead of narcosis.

    I do still feel the need to appease the lining of my nose-airways with daily cortisol puffs. Perhaps Trikafta can take over this task in the future. In the Netherlands, we are still waiting for a decision for Trikafta (Kaftrio) to be paid for by the health insurance. The latest news is that the agency that advises the government in this, has expressed the opinion that this could only be allowed for at 25% of the price that Vertex is currently asking for it. I take this as “negotiations by media”, so we will see when an agreement is reached on this. Of course, they will not disclose the price they finally agree upon, but I am confident that nowhere in the world anyone pays the official full price for medications like this.

    • jenny-livingston

      May 19, 2021 at 11:20 am

      Paul, thanks for your kind words. Regarding Trikafta negotiations, it’s been interesting (and a bit sad) to watch this from afar. I really wish there were an easy way to get access for everyone! Please keep us updated if any agreement is reached. How many people with CF live in the Netherlands, do you know?

      • paul-met-debbie

        May 19, 2021 at 3:32 pm

        About 1550. Every year 25 children with Cf are born in the Netherlands. An estimated 1 in 30 Dutch people is carrier.

  • rusty

    May 18, 2021 at 4:57 pm

    Hi all,
    Glad to hear you had a good surgical outcome. I have been fortunate not to have needed sinus work done. I have been told by one doc that my sinuses were not real healthy and a non-CFer would probably be seeking a remedy but he speculated that a person with CF might have a higher threshold for what it would take to think sinuses needed attention when the lungs were always the more pressing medical issue. Having said this, I did notice an improvement in my sinuses since Trikafta.
    Jenny, what your doctor told you about lowered inflammation possibly being a reason for better recovery triggered a memory in me. Remember a while back a discussion about more incidences of low blood sugar after starting Trikafta? I recall my endocrine doc mentioned lowered inflammation as a possible explanation for this as the body is more sensitive to insulin in a lower inflammation environment.
    I am a fan of lower inflammation!

    • jenny-livingston

      May 19, 2021 at 11:23 am

      Rusty, I agree completely with the idea that some things flew under the radar before, not because they weren’t an issue, but because there were other more pressing issues. My sinuses have improved as well, just not as much as we’d like to see! But hopefully this will be my last surgery for quite sometime.

      The connection between inflammation and insulin isn’t something I had even thought of! You’ve definitely given me something to think about. Thanks!

  • tim-blowfield

    May 20, 2021 at 5:47 pm

    Thanks for posting – wonderful news. As a CF community we need to document all these ‘improvements’ we experience with these new drugs. In this conversation not only has improved sinuses been documented but reduced inflammation. I do believe that many issues have gone under the radar. Reva has many issues that are not commonly reported including cardiomyopathy, hyperparathyroidism, hyperaldosteronism & Adrenal Failure, vasculitis and articular obstruction, Inflammation and Sjogren’s Syndrome, (and so her list goes on!). We are hoping to get her onto Trikafta to see what improves. Many of these under the radar problems may well show up where the lungs are improved by modern treatments including transplants. Though with transplants inflammation and Sjogren’s may well be controlled by anti-rejection drugs.
    And so we may well find out that CF is not just lungs and gut!

  • jenny-livingston

    May 25, 2021 at 10:38 am

    Another quick update here. Yesterday, I had my post-op appointment and to say it went well is a huge understatement. My ENT says he’s never seen my sinuses look so good, ever. I am healing very well, there was very redness or inflammation, and almost no crusting or mucus of any kind.

    Generally, by this first post-op appointment, we’re already dealing with so much inflammation and the CF mucus/infection is already creeping back in, making healing incredibly difficult. Currently, none of that is an issue. I am confident that Trikafta is the difference here. I am even more excited now than I was when I first posted about this right after surgery!

    • paul-met-debbie

      May 29, 2021 at 3:52 am

      Great to hear, Jenny, thanks for sharing. It completely makes sense that Trikafta reduces inflammation, and it is very good to hear from first hand experiences that it really works out that way, not only in the lungs but also the other airway systems, and probably the entire body.

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