john-f-schroeder
Forum Replies Created
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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 definitely would have loved them all.
After that in no particular order, my grandparents – all of them. I’d love to ask them where exactly they grew up, how did the eventually wind u in the US and get married, etc. My mother’s mom lost a child to “pneumonia” before he/she reached 2 years. I wonder if that child had CF. I’m pretty sure my mom passed down the F508Del mutation to me, based on info from relatives on her side. That’s the only CF gene in my nuclear family.
I’d love to visit with Drs. Dorothy Anderson, Harry Shwachman and Paul di Sant’Agnese to discuss their work and thank them for their interest and development of the science of CF. That would probably be several lunches! 🙂
Finally, Wolfgang Amadeus Mozart, whose music I adore. And scientists, Galileo Galilei, Isaac Newton, Albert Einstein, Erwin Schrödinger, Paul Dirac, and Richard Feynman whose work inspired me and lead to the phenomenal Physics we have today.
WOW! Lotsa people! But it’s fun to contemplate them all.
Thanks, Bailey! You started me off on a great topic!
John
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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 open arms. Social Workers do help “fix” things but they are also enormous fonts of information on coping with medications, nebulizers, who to ask about “whatever problem” you are having, etc. And the good Social Workers are also very empathetic. They GET what’s going on and work with patients to solve problems. And I don’t mean this as a slight against doctors and clinicians, at all. Most CF docs/clinicians I’ve known are very empathetic problem solvers too. But the combination of a doc and a Social Worker and other CF Team members, make a formidable team that helps people with CF and their parents and caregivers deal with the many “issues” faced by a person with CF. So THREE CHEERS FOR SOCIAL WORKERS!
Disclaimer: My Wife is a retired LISW 🙂
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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!
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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.
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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 the science and can see forward, with the success of the mRNA vaccines, what an mRNA therapy could do for CF’ers with the Rare and Nonsene mutations. And, if theese therapies can even coome close to the success of Trikafta, it brings us all much closer to our shared “Until It’s Done” ideal!
Beyond mRNA therapies, I can see the day – which likely is several years in the future – when CRISPR or other gene editing tools can actually cure CF. That dream has been so far away for so long – my kids were diagnosed in 1974, 15 years before the CF gene was isolated! – and hard to belive in. But now I see a better road forward. It will take a lot of work and a lot of luck, but the path is becoming clearer.
On a final note, I strongly recommend the book “Breath from Salt” by Bijal P. Trivedi. The subtitle of the book,”A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever” says it all. It’s a wonderful, inspiring, read for everyone in the CF world.
That’s all for now! On to 2021 and, hopefully, a COVID-Free world!
John
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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 [email protected], if you prefer.
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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???
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Yes I know that people who see the most New Years live longest I am heading into my 77th ! YES Onward!
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Good point Tim. No resolutions means nada to worry about 🙂 HAPPY NEW YEAR y’all
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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 the progress made to treat CF. Now with the CFF leading, we turn our attention to the 10% or so who can’t use CFTR Modulators. I remember so well, when our 2 kids were diagnosed back in 1974, that there was little hope for people with CF. Some did pretty well, like my youngest, Tom., who’s not 46 and on Trikafta! Some did not so well, like my oldest, Ann, who passed away in 2009. Mike, our “middle” one suffered too, feeling “left out” with all the attention paid to Ann and Tom.
Things are very different now for the 90%’ers – our Tom – with treatments that almost take CF away. But the 10’s are still in the place we were in 1974 … EXCEPT .. The CFF has launched it’s Rare Mutation Initiative to raise money and support research for treatments for people who cant use the modulators, and ultimately to cure CF. Very ambitious, but now, in 2020, we can “taste” and “smell” the cure getting closer! I am 77 years old and really hope that I will see this come to fruition in my lifetime! I may not, but I KNOW that this will happen. So, I hope that everyone in the CF Family can look forward to the PROMISE of treatments/cure for ALL with CF. It’s an amazing time!
So that’s my look forward into 2021 and beyond. I can SEE the day when CF=CureFound and hope I can be there to celebrate when it happens!
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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….
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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
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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 to Bailey! WAAAAA! So What’s the trick? How can I replay to a reply on my note???
Can anyone help me?
And, by the way, if this is the ONLY way to reply – THANK YOU VERY MUCH BAILEY VINCENT! 🙂
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We had 2 kids with CF, Ann, and Tom. We have a 3rd, mike, wo doesn’t have CF. Ann passed away in 2009. Tom is doing very well and at age 45, having started Trikafta in Nov 2019, he is looking forward to a long, healthy life!
In 1982 an international school opened up in NM. It was called “The Armand Hammer United World College of the American West” (that’s quite a MOUTHFUL :)! now known as UWC-USA! (“https://www.uwc.org/usa”) There are approximately 20 of these institutions around the world, and they are open to students aged 16-19 who are interested in a rigorous two year education – typically students do their last 2 years of high school at a UWC – leading to an International Baccalaureate. When my daughter, Ann, heard about the school she was interested in exploring it.
The goal of the UWC institutions is the foster international cooperation, and in perusing that goal, each school has students from all over the world. Teachers are also from many countries,. The students live at the school for their two year stay, with off for Christmas and other holidays as well as the summer between their first and second years.
In the fall of 1982 – LONG BEFORE the cross infection issues for kids with CF were considered a problem – we were approached by the Dean of Students of the UWC-USA about what their students could do for kids with CF! The students are required to work with the local communities on community service projects and such. Andrew Maclehose, the Dean, had worked at the UWC in Wales, and their students had worked with people with CF in their community. He suggested they night do a Camp for kids with CF.
That was all Ann had to hear and she was totally game for the idea. Tom wasn’t as sure as Ann, but was interested in a camp for kids with CF. So we worked with the school and a student from Australia, Paul Grimes, and the first CF Camp was held in June of 1983! Both our kids LOVED it. First, and foremost, they met a lot of kids with CF and were able to share their common experiences. Secondly they had about 10 counselors, all UWC students from around the world, with various accents, and skin colors, from South America, Europe and Africa. It was our kids first exposure to such a variety of international kids. THEY LOVED it. They made, and stayed in touch with, many new CF friends, as well as learning a lot about the various countries the counsellors came from, AND, they played games, swam, soaked in a natural hot spring, cooked out. In short they had a BALL!
The students were all trained in the daily CF regimens – lots of pills, 2 or 3 sessions of “Postural Drainage” lots of liquids etc. The campers helped them out with all their care. It was a very warm, mutually beneficial, and synergistic experience for them.
The BEST thing to come out of the camp experience was that we all – parents and kids – made lifelong friends, who we see fairly often, and communicate with often. The other GREAT THING was that Ann was able to attend the UWC-USA in Montezuma, NM. It was one off the best experiences of her short life. In the summer between her first and second years, she travelled to Europe and the Middle East – Egypt, and Israel – to meet up with friends, and other UWC people.
After she finished college, she was invited to join the International UWC Board of Directors and an Alumni Representative. She also worked for 2 years at the UWC-USA. She met and befriended Queen Noor of Jordan and met Nelson Mandela on a trip to South Africa with the UWC Board. It was an amazing experience for her – and for all of us – all coming from a CF Camp when she was 14 !! So it wasn’t “just” the camp, but all of the things that she enjoyed all throughout her adult life.
Our son, Tom, also loved the camp and the people. He wasn’t interested in attending the UWC, but he still has friends from the camp, as well as the counsellors. He looks on the camp as one of his best experiences as a kid with CF!
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Thanks @jennyLivingston
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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 been hospitalized for CF issue 4 times and had been on IV Antibiotics maybe 6 times in his 45 years!
When you’re dealing with CF, my wife used to say, it either makes you or breaks you. Fortunately for many people we know, it has made them, and this basically means they are more resilient. You learn how to deal with small and large emergencies. I look at resiliency as a muscle that needs exercise, and with CF in the family it gets a LOT of exercise! But too much exercise especially when you’re not use to exercise can damage your muscles, and “break you”.
Our “resiliency”‘ was helped by a very supportive family, medical staff, and friends. We were devastated when the 2 kids were diagnosed 6 weeks apart. Ann was hospitalized with bilateral pneumonia at age 6, and then diagnosed with CF. Tom was born about a month later and diagnosed at 2 weeks. So we got hit with a double whammy.
Fortunately we had supportive friends and family and an excellent doc. They helped us absorb the blows of diagnosis and as the kids grew and responded to treatment, we saw that there was hope. As time went on we developed more of our resiliency muscles which helped us deal with Ann’s continued illness and Tom’s occasional ones.
Ann’s death almost took us out. But we were stronger than we thought – that earlier resiliency exercise helped!
Resiliency does NOT mean happy or fun. There are definitely happy and fun times, which help a lot. And coming out of a very hard time, mostly intact, makes you even more resilient. It’s a lot about leaning how to cope. And with family and friends and support from groups like the people involved with the CF Foundation we have learned how to cope as well as we can.