Hi Bailey,

I had both in the same day (different arms) over a week ago  The booster and regular flu shot did cause me to have sore arms for the next couple of days, but I think having covid and/or the flu would be much worse.  It reminded me of past booster shots I had.  The pain was not unbearable.

 

Jude

 

I love John Lennon’s “Imagine” and find it relaxing.

Jenny,

I’m very happy for you with all the positive effects of lowering the Trikafta dose on your mental health and sleep.  It would have been a very difficult decision for me, and knowing of the positive effects has to be reassuring for you.  May you continue with having  better sleep and feeling healthier mentally.

I’m sorry to hear about… Read more

I tried marinol, which my CF doctor prescribed in 2011 for weight gain.  I wasn’t on it long.  My brother with Alzheimer’s (he was 67 at the time and died in 2019) was living in assisted living, and I had to take him to his many appointments.  I didn’t take it for very long because I was worried about driving him around while taking marinol.… Read more

Paul, Happy Birthday!  My best to you in starting Kaftrio.  I have been on Trikafta for over a year and a half, and it has helped me tremendously in many ways.  I’m still struggling to gain weight, but the lung function has improved.  My FEV 1 is still lower than I would like, but I went for 3.5 years without needing antibiotics, and when I… Read more

Paul Met Debbie,

I’m not sure I’m speaking to just Paul or just Debbie or Paul and Debbie.  Which one of you has CF, or do both of you have it?

Anyway, I want to thank you for the comments.  I loved studying Hinduism and Buddhism.  No very little about Jainism.  Have studied The Bhagavad Gita and parts of The Upanishads.  I really liked the… Read more

Tim
<div>    I also love the Prayer of St Francis.  My husband and I said it at our wedding.  Still love the Buddhist prayer, too, and believe the poet thought about the order.  I am not a religious person and do not adhere to any specific religion, but I think I am a spiritual person.  There are many treasures in the different… Read more

Forgot to mention that it’s not a coincidence that being filled with lovingkindness comes before being well.

I am happy to write something to you that is helpful, Jenny.  Let us know in a few months how it is going for you.

Jenny,  Such decisions like this are never easy.  I hope you can breathe easier now that your decision is well thought out and over.  Here’s a simple Buddhist prayer, author unknown:

May you be filled with lovingkindness;

May you be well.

May you be peaceful and at ease;

May you be happy.

 

I am not preaching any particular religion here.… Read more

I have not read these blogs before.  What county do you live in?  Who has CF?

It’s interesting to read that 3 out of 3 people who commented have trouble with the sense of smell or can’t smell at all.  I always thought this was a side effect of a lot of antibiotic usage.  Maybe it’s just sinus and rhinitis issues.

Judy Moreland

 

I love the taste of ice cream and fresh fruit, the smell (when I can smell, which is not often) of barbecued meat, the feel of the grass beneath my feet and the sun on my body, and the sound of the crickets at night in August.

Paul and Tim,

I find this very confusing after thinking all these years that the chloride didn’t get into the cells.  In my memory, I see diagrams showing how some of the new drugs let the chloride right outside the cell go into the cell and some have to bring the chloride to the cell and then inside.  I have R117H in addition to F508, and with… Read more

Thank you, Tim.  I have disliked “CF-er” for years.  Appreciate your apology.

I tried to fix my first sentence but wasn’t quick enough.  Should say “I was a teenager for most of the 60s and loved  . . .”

 

I grew was a teenager for most of the 60s and loved the Beatles, Chris Montez, Peter, Paul & Mary, The Mamas and the Papas, Simon & Garfunkel, and I could go on and on  . . .

Didn’t mean to submit twice.  I didn’t think it went through the first time.  Sorry.

Judy Moreland

 

First of all, please let’s stop using “CF-er.”  We are much more than our disease, and I know we say “diabetic,” “quadriplegic,” “etc, but personally, I really dislike “‘CF-er,”  and I’m not sure “diabetic” is the first adjective used for someone with diabetes.  Would much rather be called a “a person with CF,’ or PWCF.

Secondly, I don’t… Read more

I am not at all happy with the latest decision about mask wearing. We who have been fully vaccinated have no way of knowing if maskless people are also fully vaccinated or not. Some may have not been vaccinated at all (and don’t intend to get vaccinated) and other may not be fully vaccinated. Some may be unable to get the vaccine for… Read more

Jenny, I have been trying to find your fairly recent column on your latest health challenges, and I’m coming up empty. Want to reply to you, and I am sorry that your challenges with this awful disease are intense right now.

Bailey, Good for you that you love hypertonic saline and TOBI for how much they work. I hated taking TOBI each time I had to take it because 25 minutes twice a day for 28 days was hard for me. Also hate cleaning the nebs, and when on TOBI, there are LOTS of extra nebs. I put them in the dishwasher, but as I use the Pari nebs, I always… Read more

I wish I had thought to add that the hospital personnel at the University of North Carolina in Chapel Hill and my present CF Care Team at University Hospital in Syracuse were (and are in the case of University Hospital) made up of very committed and compassionate people. That’s definitely what a CF Care Team should be.

Thank you, Jenny and Bailey.

This is a reply to “Do you get nervous talking to healthcare professionals or asserting yourself in an appointment?” My answer is no, not anymore.

I survived 3 years as a nursing student in the late 1960s. Back then, the doctors, usually men, were godlike and many of the nurses submissive. At least we nursing students were submissive. We… Read more

The part of my personality that makes health and healing the hardest for me is twofold: I am a great procrastinator and a great perfectionist. Of the 2, procrastination is the worse personality trait, especially now that I no longer work. When I worked full time (until age 51) and then part time (until age 58), I was much better at doing… Read more

There are different opinions on this subject of dehydration and alcohol and caffeine intake, especially caffeine intake. The different opinions above make me think I don’t have the complete knowledge to know what is right for every person with CF.

I didn’t understand all of Paul’s opinion, but I think I will leave it at this: In my… Read more

I forgot to check “Notify me of follow-up replies via email” in the previous comment.

Thank you.

Judy Moreland

Alcohol is dehydrating, the opposite of something a person with CF needs. Ever notice how thirsty you get after drinking more than one or two drinks?

My understanding of the problems in CF is that problems are caused because chloride doesn’t form salt in the cells correctly. The salt (sodium chloride) holds water and lubricates the… Read more

Superabundant stress (I know; it’s 2 words.)

I definitely miss my CF Care Team. There is a great one at State University of New York (SUNY) CF Clinic in Syracuse, NY. I have been going there for 22 years now. After I was first diagnosed in 1992, this clinic was only for pediatric patients. By 1998, I could get in and saw a pediatric CF doctor for the first year until and adult… Read more

Bailey,

Fredonia is in Western New York State. Syracuse is in Central New York State. Fredonia is about a 3.5 hour drive from Syracuse. It’s funny, but as a young person I always thought that I had no accent. The people I worked with in Philadelphia laughed at the Syracuse flat “a” as in “I ha-a-ave to get my pa-a-ackage.” I worked on… Read more

Baldwinsville, NY, a suburb of Syracuse, NY in Upstate NY. Some people who aren’t familiar with New York State think that its mostly New York City, but upstate is very different. Syracuse in the snowiest “big” city in the country. I’m sure there are small towns or hamlets that are snowier in the north, but we are the biggest city with the… Read more