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I still produce some insulin so I don’t have to inject any, but I have to manage my diet pretty well to keep the glucose spikes from happening. I usually eat a high protein diet and have low carb veggies like broccoli and cauliflower. Fortunately, I really like them. Also, cheese. I make a version of bread in a ramekin in the microwave using almond flour or pecan flour and I top it with peanut butter or almond butter. Recently I tested a breakfast cereal called Magic Spoon which comes in a variety of flavors, and it did not raise my blood sugar. I was very surprised at this even though I had viewed several videos of people testing it for themselves and having the same result. I use almond milk on it and occasionally add some heavy whipping cream. Yummy. If I find my blood sugar going high because I wasn’t diligent enough with fork and spoon some moderate exercise in the form of walking or light calisthenics will help bring it down. Try to get adequate sleep as that also helps with glucose control. As an elder, I have a little bourbon before supper, and I can attest that my glucose definitely goes down as a result. This will happen with a distilled spirit or with a dry red wine. Moderation is recommended, but it works for me. Always remember, challenges and setbacks are going to happen and there is no way around that, so be prepared don’t give up.

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Happy Birthday Jenny!  I had a birthday yesterday, my fellow Virgo.

There are tons of “secrets to life” so I will share one from a man named Charlie Munger, Warren Buffets’ brilliant right-hand man.  Sometime after a birthday of his – he is in his nineties – he told the audience in an annual meeting to never put off until you are 93 what you could have done when you were 92.  Words to live by!

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You know what?  I don’t really have a go to album but over the  covid winter I decided to listen to Puddles Pity Party and was glad I did.  He has many youtube videos and, aside from having an amazing singing voice, he is very entertaining to watch.  My favorite one is his version of Sound of Silence.

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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!

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I like to add salt to beef and chicken. And pour olive oil on vegetables so salt will stick to them. To avoid the carbs of potato chips but still have something salty and crunchy I have learned to like pork rinds.
I have found that kosher salt has a saltier taste than regular table salt so I use that at the table. I haven’t tried salt flakes yet but it is only a matter of time. Almost forgot to mention salted peanuts, another favorite salty snack.

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I also like to choose cheese. Additionally, a great big spoonful of peanut butter or almond butter is a favorite and goes well with a piece of chocolate. In a pinch, I will mix whey protein powder in water and dump in a generous amount of heavy cream. Isn’t fat just wonderful?

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I have seen some pretty low sugar readings since starting Trikafta. I had been taking a small dose of repaglinide with my biggest meal for many years now and have had no problems until post-Trikafta. I mentioned this to my endocrine doc and she prescribed a lower dose – the lowest available – and so far this has helped quite a bit. She speculated that the Trikafta makes us more efficient at using the calories we input but she said the data is not sufficient at this time to know that for sure. Since my cfrd diagnosis many years ago I went low carb and that has helped keep the A1C and blood sugar spikes much lower and greatly reduced reactive lows. Pre-diagnosis I had many reactive lows and didn’t know what they were or why I was having them. I had the most pronounced lows post breakfast when I would have a lot of carbs like toast and cereal and then go out and get physically active. Going low carb helped put the kibosh on all that. This is still a work in progress for me but I think I am on the right track with the lower dose of repaglinide.

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First off, I feed the cats. They are my alarm clock and when they wake me up there is no snooze button. They mean business! Next, I down a few morning pills while I make a cup of tea. When the tea is ready I’m off to the basement for airway clearance punctuated by sips of tea. Back upstairs I clean the litter box and make breakfast and peruse the paper as I eat and have coffee. This is my always routine, one I have been doing for decades. I told myself many years ago the CF is relentless and never takes a day off so I have to be the same way. The only time this doesn’t happen is if my wife and I are traveling somewhere. It has become so much a part of me now that I can’t imagine changing it. It may sound boring but I guess it has worked because I’m still here.

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Episodes of “Finding Your Roots” are very interesting.
For guilty, mindless pleasure there is “Schitt’s Creek”.

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Oops, a couple more changes/improvements. The use of Cayston every other month is a boon. No more painful artery sticks to get a blood gas – just put out your finger for a quick pulse oximetry. No more being paired with another CF patient when hospitalized. Getting a flutter valve to help with airway clearance. (I have never used the vest but that is also a change for the better). I am done now. I guess.

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Where do I begin? As a 64 year old person with CF I have seen many treatment options change, some good and some bad. The bad would be many of the antibiotics that used to be effective no longer are. The good, indeed the best, have been the CFTR modulators. I used to work in a major medical college hospital that is also a CFF center and as such I was involved in several clinical trials. I had the second gene transplant in the US which “cured” a small portion of my nasal passage. I was slated to be first but some sinus issues precluded that from happening as the symptoms could mask a potential side effect from the modified cold virus that was being used as the vector for the normal genes being transplanted. Unfortunately the gene transplants did not pan out but maybe somewhere down the road? I was also in all three phases of clinical trials for Kalydeco. It was all double blind but in very short order I knew beyond a doubt that I was receiving the real drug. I thought Kalydeco was the ultimate breakthrough and that I would never see anything better. Then along comes Trikafta and I am still amazed at how much improvement that has provided over and above Kalydeco. Trikafta got early FDA approval but I was still enrolled in clinical trials for it as they wanted to gather more data and actually complete the trials but covid put an end to that.
Almost forgot; the way the IV antibiotics are administered has changed for the better as well. They used to use short IV catheters in the arm or hand that had a tendency to infiltrate rather quickly. If you had one that lasted three of four days before it had to be pulled and a new one inserted you felt very lucky.
Now with the longer cath’s the many painful pokes are a thing of the past. Also, I can have a pump at home and administer my own antibiotics without having to be an inpatient. A vast improvement!
I’m sure I could think of more but that is enough history for today.

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I read one person’s thought about reason vs. excuse. He said a reason is factual and an excuse is just a rationalization. If you are in a body cast you have a reason why you cannot work out. If you just don’t want to work out you might talk yourself into some kind of excuse to use. The thing about this is it is up to you to determine which one is true. I have sometimes come to the conclusion that my “reason” was only really an excuse and then proceeded to work out at whatever intensity that felt comfortable. Of course, I have also decided that my excuse was bogus and conceded that I just wanted a day off and ditched a workout and that was OK. (Honesty was it’s own reward). I just don’t make that standard practice.

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Are people 65 and older getting prioritized because they are high risk? Of course. So what makes their high risk “better” than the high risk of something like CF? I do not begrudge the 65 or older crowd for being eligible ahead of someone with CF or some other condition that makes them high risk, I just wonder how the distinction is being made. As for me, I’ll take the shot whenever it is offered to me regardless of who has or hasn’t gotten one because, well, what other option do I have.

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Congratulations! I hope the vaccine pipeline starts to open up a little wider soon. Mostly all I hear about are delays and shortages. Also, it is a bit disheartening that some people are declining to get the shot. I just hope it is due to valid reasons rather than misinformation or mistrust.

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Hi All,
More psychology. I will start with this quote that comes from an author named David on the website Raptitude:
“The real pain of many tasks is psychological, arising from the way the mind processes them, not so much from the actions that constitute the tasks themselves. The general rule seems to be this: the more abstract we make an event – that is, the more we see it in terms of its meaning to the mind, rather than how it feels to the senses – the greater the psychological pain that is created. The more we can zoom into the direct experience, and refrain from engaging with the story around it, the less of a pain in the ass it is.”
Don’t get me wrong, I do not mean to minimize anyone’s hardships. I am in no position to do so. It’s just that I have found this quote to be true. I look back and see how I talked myself into believing something will be miserable or awful or just plain hard, etc. but discovering after the fact that it was nowhere near as bad as I had imagined.
How does this apply? Well, Jenny, maybe you saw that asking someone for help did not come with negative consequences. Bailey, maybe they won’t find anything but that won’t make you stupid. You are clearly experiencing issues and they should be looked into to try to get a resolution. Remember, these are only thoughts that are causing anxiety or anguish or whatever. That being the case, thinking different thoughts can be the way to alleviate all that. At least…I think.

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Hi All,
I read somewhere that Alton Brown will add a bit of salt to coffee to reduce bitterness. I tried it and it did seem to make the cup a little “smoother”. I would only do that to bitter coffee which I don’t tend to buy. As for me, coffee never seemed to be a problem. Two cups a day. I believe the diuretic effect is more than offset by the amount of liquid in the coffee. As for alcohol, I have a bit of bourbon everyday because I love it. I also like red wine and sometimes have that in place of the bourbon. Can’t give up every vice; where is the fun in that?

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Nonirregardless. Everything that happened this year happened nonirregardless of how we feel about it. Kind of like all of life. That, Jenny, is my perspective.

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“Anything worth doing is worth doing poorly.” Ha! I remember my brother saying this about 30 years ago and it is so true. I think a key to maintaining exercise is to just get started. Trying to hold yourself to a strict routine may actually have the adverse effect of you doing nothing on days you just don’t feel into it. Instead, tell yourself you are only going to do a minimal amount and then go do that. You may find, as I have, that once you get started on the mini version of a workout you decide you can do just a bit more. And sometimes just a bit more after that. Sometimes you wind up doing the full blown workout. I think it is like inertia – once you get going it is just easier to keep going.

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I was not given specifics about just how much fat must be taken with each dose, only to take it with some fat. I just looked up the prescribing information from the Trikafta website and it says, “TRIKAFTA should be taken with fat-containing food. Examples of meals or snacks that contain fat are those prepared with butter or oils or those containing eggs, cheeses, nuts, whole milk, or meats [see Clinical Pharmacology (12.3)].”
Officially, it seems, there is no official amount other than “some fat”. Yay fat!

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I have not been told to take a specific amount of fat, only that fat must be taken with the modulators. I love fat. I usually use cheese or full-fat Greek yogurt. I am always willing to add liberal amounts of butter or extra virgin olive oil to many things, especially vegetables. I have no limits to the amount of fat I am willing to consume so I feel I am safely meeting the “take with fat” amount required to get the most out of my Trikafta.

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Hi Tim,

I can’t speak for all people with CFRD on Trikafta but good glucose control still depends on my efforts. A small amount of simple carbohydrate will send my glucose rocketing with an inevitable crash. There is no gently rising and falling curve on my cgm but something more like a steep rise and dramatic fall. I can usually just ride the low out and let it resolve on its own, but I have occasionally taken something to help my glucose rise quicker. The problem I have with that is that it is easy to overcompensate on the carbs, especially if I do it with a food source. It seems that when your glucose is low it is too easy to just keep shoving more delicious carbs into your mouth in an effort to pull out of the bad feeling from the low.