This is an interesting question,   So many people, so little time for 5,000,000 lunches! LOL

First would be my daughter, Ann, who died form CF in 2009.  Had so many lovely meals with her.  One more would be amazing!

Then, my Mom, who died when I was 15, who never got to know me as an adult, and never met my wife and kids and grandkids.  She… Read more

Social workers are an ABSOLUTE necessity on the CF Care Team. Early on in our family’s experience in CF, Social Workers were looked on as unnecessary by doctors and clinicians. They’d be asked to “fix” things when a patient or parents got “emotional.” But as the clinicians got to see how helpful Social Workers were they welcomed them with… Read more

Hi Bailey

I saw your response in an update that was sent to me! Understand completeley – Which Do I DO??? While the docs know a lot more about backs and how to help with back issues, there’s stll a lot to learn and it’s sooo frustrating to be in pain and relly not know what to do 🙁 Hope you heal soon!

WOW that’s scary! Hope you find a solution soon! Backs are weird! I have had a “Bad back” due to an inury I had when I was 13 in 1956 or so. Fortunately Physical Therpy and some asprin and other NSAIDS etc over the years, have kept me doing ok.

Scarystuff! I hope your dics find a solution for you Bailey.

Hi Jenny
And HAPPY NEW YEAR! So glad to hear you had a good holiday and were able to get outside and enjoy yourself.

Boy , what to discuss this year! So many things. I am very interested in the CFF’s initiatives to get reliable therapies for people with Rare and Nonsense mutatuons of their CFTR gene. Being a geek, I am enthralled by… Read more

Hi Tim

do you mind a few questions about your wife. When was she diagnosed, what CF issues she’s experienced, etc. Just curious! and if you’d rather not, no problem. And you can write me privately at john@basicallyjava.com, if you prefer.
John

Hah Yep! and .. wow Your wife is 78! WOW WOW WOW that’s wonderful! Glad to hear she is eligible for Trikafta! it’s an amazing drug. And your wife is amazing So the combination should really let her live till 103! WOW Lol Why stop at 103???

Yes I know that people who see the most New Years live longest I am heading into my 77th ! YES Onward!

Good point Tim. No resolutions means nada to worry about 🙂 HAPPY NEW YEAR y’all

Not a fan. I used to make resolutions and never succeeded in keeping them ! LOL So now I just figure I got this far, so I’m just going to keep on going as long as I can!

It’s good, I think, as we end one year and begin another to look forward a bit. Especially for CF Families, the past several years have been absolutely amazing in… Read more

LOL glad to give you a laugh, Jenny!!

I have been saying things this year and my wife of 54 years – who should be used to me by now – turns and says “JOHN!!!!” At least she doesn’t try the soap trick!

But it’s been that kind of a year! Oh wellllll….

OMG If I tell you what I really want to say, my sainted mother will rise from the dead at midnight and wash my mouth out with SOAP! So I will just say:

SCHRECKLICH

That’s German for HORRIBLE!

John Schroeder

I need some help 🙂 I got an email that had a reply to my above note about CF Camp memories from Bailey Vincent. It was a lovely note and I wanted to reply. BUT … I clicked on the link in the email that said “Go to the discussion to reply or catch up on the conversation.” and I came back here where I can’t see anything about replying… Read more

Thanks @jennyLivingston

Most o the people I know who have CF or have a loved one with CF are very resilient. My wife and I had 3 kids, 2 with CF. Our daughter,Ann, died 11 years ago at 40 years and 11 months. Our son, Tom, is now 45, and has had a much “easier” case of CF. She was sick a lot, hospitalized, on IV antibiotics etc., several times a year. he has… Read more