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Paul met Debbie started the topic Sunday Morning (68): What about the Kidney? in the forum Adults With Cystic Fibrosis 3 days ago
So, what about the kidney?
Recently I became interested in my kidneys. I was never before. I think this is, because the kidney is one of my “silent” organs. Some organs in the body I can clearly notice. I feel and hear my lungs when air rushes in and out, I feel my heart beating in my chest and veins and I can make this visible even on my lit…[Read more]
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Paul met Debbie wrote a new item 3 days ago
So, what about the kidney?
Recently I became interested in my kidneys. I was never before. I think this is, because the kidney is one of my “silent” organs. Some organs in the body I can clearly notice. I fee
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Paul met Debbie replied to the topic A (re)introduction in the forum Adults With Cystic Fibrosis 5 days, 2 hours ago
Welcome back, Luisa! Good to hear Trikafta is beneficial to you too.
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Paul met Debbie replied to the topic How is your relationship with your CF care team? in the forum Adults With Cystic Fibrosis 1 week ago
Pretty good actually. I know my cf-nurse since 2002, she is the constant and golden factor in my team. My current pulmonologist is my doctor since a few years, and we communicate very well. He is my third pulmonologist in this hospital, the two before that got promoted away. And before that I had three different pulmonologists in my life in three…[Read more]
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Paul met Debbie started the topic Sunday Morning (67): On the waiting list in the forum Adults With Cystic Fibrosis 1 week, 3 days ago
Recently, in April, I suffered a renal colic. A kidney stone descended and became stuck between the kidney and the bladder. That is what we found out 3 weeks later, on making a CT scan. Pwcf are more prone to developing kidney stones due to the suppletion of calcium/vitamin D, taking large quantities of medication and the altered digestion and…[Read more]
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Paul met Debbie wrote a new item 1 week, 3 days ago
Recently, in April, I suffered a renal colic. A kidney stone descended and became stuck between the kidney and the bladder. That is what we found out 3 weeks later, on making a CT scan. Pwcf are more prone to
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Paul met Debbie started the topic Sunday Morning (66): Revisiting Carpe Diem in the forum Adults With Cystic Fibrosis 2 weeks, 4 days ago
Two weeks ago my Sunday morning contemplation was about the aphorism “Carpe Diem”. “Seize the day” is the most common understanding of this. I offered three quotes about getting older, birth and death, but on close inspection these were also about another aphorism, called “Memento Mori”.
So I revisited the subject and wrote a Tale about it, this…[Read more]
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Paul met Debbie wrote a new item 2 weeks, 4 days ago
Two weeks ago my Sunday morning contemplation was about the aphorism “Carpe Diem”. “Seize the day” is the most common understanding of this. I offered three quotes about getting older, birth and death, but on
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Paul met Debbie replied to the topic Trikafta and Mental Health in the forum Diagnosis Information and General Questions 2 weeks, 5 days ago
Jenny, when reading the article I thought of you immediately!
It is good to know that these side effects are on the agenda now, and that dose-reduction can be a good solution.
Trikafta has not influenced my mental health as far as I know. Only some light changes in my sleeping pattern with occasional problems of falling asleep in the night. I…[Read more]
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Paul met Debbie started the topic Sunday Morning (65): Writing with a fountain pen in the forum Adults With Cystic Fibrosis 3 weeks, 4 days ago
“None of us can have as many virtues as the fountain pen, or half of its cussedness – but we can try”,
said Samuel Langhorne Clemens (1835 – 1910). We know him by his pen name Mark Twain, the father of American literature.
American literature is not very well known to me, but (next to some poems by T.S. Eliot) I have read Huckleberry Finn…[Read more]
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Paul met Debbie wrote a new item 3 weeks, 4 days ago
“None of us can have as many virtues as the fountain pen, or half of its cussedness – but we can try”,
said Samuel Langhorne Clemens (1835 – 1910). We know him by his pen name Mark Twain, the father of
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Paul met Debbie replied to the topic Bacteriophage Therapy Success Story in the forum Adults With Cystic Fibrosis 3 weeks, 6 days ago
I found a good article by Kelly Todd about the difficulties in patenting phages.
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Paul met Debbie replied to the topic Bacteriophage Therapy Success Story in the forum Adults With Cystic Fibrosis 4 weeks ago
- This is a promising therapy that has been developped and known for decades in the former soviet union, driven by a lack of many of the antibiotics of the free Western world. Currently, Russia, Georgia and Poland are known centers for phage development and use.
- I would certainly consider phage therapy if needed. It seems to be very…
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Paul met Debbie started the topic Sunday Morning (62) What Carpe Diem means in the forum Adults With Cystic Fibrosis 1 month ago
What Carpe Diem Means 5 June 2022
Recently, Nicole Kohr wrote one of her lovely and lively tales, this time it was about the Joy of Aging. You can find it here, highly recommended!
https://cysticfibrosisnewstoday.com/2022/05/12/when-i-grow-up-aging-cf-is-gift/
I wrote a sunday morning talk about this last month, but didn’t publish it so…[Read more]
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Paul met Debbie replied to the topic Day 27 of #31DaysOfCF: My Sister’s Journey Inspired Me to Become an Advocate in the forum 31 Days of CF 2022 1 month ago
I don’t advocate CF in particular because I don’t identify with it. But I advocate life, of which CF is a natural part.
I can relate to how siblings can influence the lives of each other. My brother Rudy had CF and he died before I was born, so in a way I also carry his torch and by living the life, contribute to what he started. Not as a pwcf,…[Read more]
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Paul met Debbie replied to the topic Day 28 of #31DaysOfCF: Our Son’s Journey Through Diagnosis and Treatment in the forum 31 Days of CF 2022 1 month ago
What a great picture of Bautista!
Treatments are part and parcel of CF. I absorbed my treatments in my daily life to the extend that it doesn’t feel like “doing” anymore, it goes by itself. In the course of my 58 years with CF I learned how flexible I can get with this without harming, which depends on the sort of medication. CF is relatively…[Read more]
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Paul met Debbie replied to the topic Day 30 of #31DaysOfCF: Singing for Joy – and Cystic Fibrosis Awareness in the forum 31 Days of CF 2022 1 month ago
I found your Youtube channel, Sicily. It’s great to hear you make music, never stop singing!
Music taught me to be in the flow of creation. My mother taught me to play the piano when I was 5 years old and I never stopped since. Playing the piano dissolved my notion of ego, time and space into one. Making music is one of my profound joys.
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Paul met Debbie replied to the topic Day 29 of #31DaysOfCF: I Tried Something New And Found My Passion in the forum 31 Days of CF 2022 1 month ago
Great story, Rachel. Life is a dance indeed.
The only excercise I have been able to include in my routine, is the routine itself. I do what my body wants doing. It is fully in tune with its needs as long and because I don’t mess this up with thinking and planning.
So I happen to find myself walking our dog 4 times a day and doing everything that…[Read more]
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Paul met Debbie replied to the topic Day 25 of #31DaysOfCF: How CF Dissolved All of My Predicaments in Life in the forum 31 Days of CF 2022 1 month, 1 week ago
This is a shortened version of a Talk titled “58 years with CF” that can be read on our website here.
For those of you who want to know even more about liberation and how to “get there”, it’s is all revealed in another Tale titled “Falling Awake” on our website here. And in some of the later tales as well.
Of course, there is no way to “get…[Read more]
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Paul met Debbie started the topic Sunday Morning (64) Life is beyond limits in the forum 31 Days of CF 2022 1 month, 1 week ago
In Day 23 of the 31-days-of-CF series on this forum and website, Maggie Ronayne reveals that Trikafta has removed many of the limitations that CF used to impose on her. In her own words: “The blinders have come off”. This made me think about limitations in life. Are they true or only a perception?
Life is both limited and limitless. On a firs…[Read more]
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