Well what a week+. At my last clinic I asked my doc to refer me to an ENT (Ear, Nose and Throat) specialist to look at my sinuses. The reason is because I have had nasal polyps my whole life and i felt like the ones I chronically have growing back were getting bigger, to the the point of blocking my airways yet again. He said I needed a CT scan first so he got that booked for me.
I have had 7 surgeries to remove them and in that time my sinuses have been scraped, drained, reconstructed and literally bashed to bits. My last surgery was 1992. Back in the day the surgery was complex and each one added more danger to the next one due to scar tissue building up near my brain and behind my eyes. I thought that I probably should see where I was at and knew that the surgery itself has changed quite drastically since my last operation. It is now at a point where, if the polyps were small enough, I wouldn’t need to be knocked out for it thus saving the effect it could have on my lungs.
So here we pick up for the bad news.
I had the CT scan done the evening of August 30th, by 9 am the next morning I get an urgent call from my nurse practitioner asking how I was doing, and could I see OK. I answered back with a yes and what the heck was she getting at?? She said they received the results of the CT scan and a few things came up as critical. I was kinda dumbfounded and said, OK, now what? She said hang on and I’ll get Mike (my doc) to call me after he reviews the results. So I get a call from Mike and he tells me I have some serious issues going on besides the nasal polyps, which of course were there. He said there is a mucocele (pronounced mucoseal) the size of 2 olives and that they were sitting on my optic nerve. This is not good and he would refer me urgently to an ENT. 3 days later I get a call with an appointment for today. Normally it takes 18 months to get in to see these specialists. So I wasn’t panicking until I had all the info.
At one point my nurse practitioner thought I should go to the ER.
So let’s get to today. I go in for my appointment and the doc was awesome. She pulled up my ct report and showed me all the scary words like critical, debilitating, degenerating, loss of vision imminent, and overall, what was going on. She said I have to refer you to another expert that deals entirely with the sinuses but the truth of the matter was that, yes my case is critical, yes I will need surgery and yes I will have to be knocked out for said surgery. She said it is a matter of time as to when you will lose your eyesight so this is quite urgent. So I leave the office, digest the info and send out a text to the important people. I was also referred to an eye specialist to see how this mucosele is affecting my eyesight. I got a call this afternoon for that appointment. I guess when the top of my file says critical the health care system rallies for you. Thank God for that I guess. So now I wait for the next appointment and how soon I go under the knife. Apparently my polyps have created a bone crumbling effect in the sinus passage and could collapse my septum. There is a lot of bad going on in there. In a word, my sinuses are a shitshow. I’m not worried about the surgery itself but I am worried about what it will do to my lungs, When going under, the lungs grind to a halt and the mucous and the bacteria multiply by the minute, usually resulting in a lung exacerbation. As you all know I am at the all time low of 25% lung function and I cannot take another hit that may result in more loss of lung function and likely activation on the transplant list.
Ugh my life.
So as this throws everything up in the air for me we add the pandemic to the storyline. No one but unvaccinated COVID patients are getting priority healthcare right now which pisses me off beyond the gates of hell. But that is another blog post with a lot of swearing. So to prep me for going under I will have to do 2 weeks of IV antibiotics and due to COVID I will not be brought into the hospital- Thank God because Foothills is a shithole on the best of days. Now doing the IV’s means needing to get the PICC line, setting up home care, doing the bloodwork and all the stuff that is getting put to the back burner right now. So that’s the bad news. It’s a lot to take in at the moment.
That same day Mike had called me to tell me the results of the CT scan were bad, he pivoted to tell me something mind bending for me.
As you may or may not know my defective gene exempts me from trying the new gene modifier called Trikafta. It works only on persons with the delta 508 gene a gene I do NOT have.
I am in the 10% of the CF population that does not have the delta 508.
So while this new drug changes the lives of those who can get it,not approved in Canada just yet. Actually it’s approved but now the provincial government decides if it will pay the $300k a year for it. Still a big hurdle to overcome. Now at this moment in time the same company has decided to look at other mutations to try the gene modifier on and lo and behold it is one of mine. There are 3 very rare gene types they chose to trial it on and my defective gene, the M1101K, is one of the three. In current trials it actually performs better and works brilliantly to fix my broken gene, BETTER than for those with delta 508. So what does this mean for me? Well it just leap frogged my timeline of getting my own modifier which would have been 6-7 years away to me potentially months away. Now due to the extremely good results of trikafta on the M1101K, Health Canada will be more agreeable to approve it for the very few of us, like maybe 50 people world wide with my mutation.
Now what would taking this gene modifier do for me you ask? Everything
If trikafta can fix my broken gene I will see my body learn to function as a fixed body with no defective gene. The abnormal amount of mucous will be purged, my pancreas, which is blocked by mucous would start to work better, eliminating my need for insulin or enzymes…possibly, and my lungs would clean themselves out and would stop being ravaged by the bacteria trapped in the mucous in my lungs which would also stop the damage. I wouldn’t get my lung damage reversed but I wouldn’t have to worry about getting worse and needing a lung transplant. It’s a game changer for everyone who can take it. I’ve never thought of a future without a transplant or hard times ahead. I’ve never had a future I could count on.
So to sum it up, my future is uncertain in good ways and in bad ways. I’ve got God, my family, my friends and the best doctors in the world in my corner. My future is bright with a side of thunderstorms.
lungsofanarchy.blog 