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Paul met Debbie started the topic Sunday Morning (69) Kidney Surgery in the forum Adults With Cystic Fibrosis 7 months, 3 weeks ago
I have not been writing lately. This is because my kidney stone surgery has been sooner than anticipated. Although the surgery went well, it took every bit of my physical and mental reserves. In other words, I currently need all my energy left to recuperate and restore the balance in my system first. Fortunately, Debbie and the docs are doing a…[Read more]
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Paul met Debbie wrote a new item 7 months, 3 weeks ago
I have not been writing lately. This is because my kidney stone surgery has been sooner than anticipated. Although the surgery went well, it took every bit of my physical and mental reserves. In other words, I
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Paul met Debbie posted a new activity comment 8 months ago
Hi Jenny,
thanks for asking! Indeed I have been absent for a while.
As I mentioned earlier, I was on the waitinglist for a kidneystone surgery (URS). This happened last week and it went well. Only it took a lot of my energy, physicallly ad mentally, and I am still recovering from that.-
I am so glad to hear that it went well! I wish you a full and smooth recovery. Rest up and we’ll look forward to hearing more from you as you feel able.
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Paul met Debbie replied to the topic Has any doctor changed your life? in the forum Adults With Cystic Fibrosis 8 months, 2 weeks ago
Good question. Almost all doctors I had, influenced my life and so are the doctors that assist me right now. Without medical assistance I would not be alive at all right now. I guess the doctor who foremost changed my life was my psychiatrist when I was a young adult. I was no able to come to grip with the transition from living a sheltered life…[Read more]
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Paul met Debbie started the topic Sunday Morning (68): What about the Kidney? in the forum Adults With Cystic Fibrosis 8 months, 3 weeks 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 8 months, 3 weeks 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 8 months, 3 weeks 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 8 months, 4 weeks 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 9 months 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 9 months 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 9 months, 1 week 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 9 months, 1 week 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 9 months, 1 week 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 9 months, 2 weeks 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 9 months, 2 weeks 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 9 months, 2 weeks 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 9 months, 2 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 9 months, 3 weeks 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 9 months, 3 weeks 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 9 months, 3 weeks 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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