I am sorry the link does not seem to work correctly on this website.

Go to our website

https://www.parkinsjordaans.nl/paul_debbie.php

 

and click on the story nr. 47.

or contact me on

paulmetdebbie@gmail.com

then I will send the file to you completely for free.

 

Cheers, Paul

Congrats William to your 3rd annual anniversary!

In March 2026 the best thing that happened to me (so far) is that I finally overcame the terrible mental side-effects of Trikafta (Kaftrio is the European name) from which I suffered deeply since starting the drug in 2021.

I had a manic period (about 10 months) followed by a severe… Read more

You can find it here

https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-kaftrio-4-years-evaluation-it-helps-the-lungs-but-hurts-the-brain/

Hi William,

I have just posted the link to the report I wrote about my mental nightmare on Trikafta.

Cheers,

Paul

Some of you might remember me. I am Paul (1963), married to Debbie, we are from the Netherlands. My body has Cystic Fibrosis (delta f508/r553x). I have posted regularly on the forum since 2019. In May of 2022, I posted about using Trikafta for 9 months[1]. It was a very positive review. My lung function went up from 20 to 25% FEV1, there was… Read more

Yes, I take Dekas as well.🙂

Thanks William, I wrote a Tale about my experiences with Trikafta. It will appear on our website for free download soon. I am currently waiting for my website operator to upload it and give me the download link.

Hi Jeandarc,

My liver has (as far as I know) had no problems with Trikafta. It was checked 4 times the first year and yearly after that. Some slight enzyme elevation but nothing beyond the normal borders. My dose reduction was caused purely by the mental side effects of Trikafta that were unbearable. And even this reduction did not help. But I…

Read more

Thanks Kevin, good to hear from you and Jenny. I will post about my experiences with Trikafta soon

Cheers

Paul

Hi Jenny,

Are you still on the forum? I apologize for not having responded for such a long time, much has happend and I went through a nightmare of mental side effects from trikafta. I post on the forum soon to tell about it. Hope you are doing well. Debbie and I are holding on to eachother to overcome the situation, and recently with some…

Read more

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… Read more

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… Read more

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… Read more

Welcome back, Luisa! Good to hear Trikafta is beneficial to you too.

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… Read more

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… Read more

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,… Read more

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.… Read more

“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… Read more

I found a good article by Kelly Todd about the difficulties in patenting phages.

See https://scholarship.law.duke.edu/dlj/vol68/iss4/3/

• 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…

Read more

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… Read more

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… Read more

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… Read more

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.

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… Read more

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… Read more

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… Read more

It’s now a Tale on our website, with some references to sources and a  beautiful picture. You can download here.

What a beautiful love story! You clearly belong to eachother and we wish you all the joy in life. Perhaps you two might enjoy reading a Tale about this:

https://www.parkinsjordaans.nl/downloads/23_Intentions_A_tale_about_three_Love_Poems.pdf

I never felt the need to hide symptoms,  but out of a care for privacy I didn’t expose my… Read more

What a beautiful account of sibling love!

I love my two sisters for whom they are, (not) having CF does not come into this. I don’t even think of this as support. It comes naturally from being family. They are different from eachother, so my love emanates in different ways for them, but it is from the same source.

Then again, I feel everyone… Read more

Animals are our friends on this planet. They have been assisting our pour species for millions of years doing the hard work for which we are not strong enough, feeding and clothing us (alas) and being great company (yeah!). We are eternally indebted to them. Incredibly so, most Animals are very friendly and benevolent to us. We only… Read more

Breath is the force of life. Literally and figuratively.  It is even felt to be the origin of creation in almost all of the stories that are the core of the religions of mankind. The universal principle (God, Dao, Brahman, Atman, Allah, the One, Teotl, Atum) is often intuited and pictured  as  breathing the air of aliveness into the universe,… Read more

Congratulations to ms. White with her election as chair of the CFF!

Talking about a cure for CF is as old as CF. I am from 1963, my brother who died in 1959 was 7 years old. A cure for CF was a recurrent subject in our family, understandably.

Talking about a cure gives hope, but should not lead us away too much into the future. People with… Read more

* He used the word Brahman, which is Sanskrit for the highest universal principle, the Source of all being. For me, this is Love.

In issue #14 of the great 31-days-of-CF – series currently running on this website and forum, Shannon Miller shares going to some dark periods in life and how she managed to survive, with the support and love of her husband Jason, medication and counseling.

The question asked to our CF community by Jessy Madrigal Fletcher, this website’s… Read more

Since 3 years I connected to this cf community on cfnewstoday.

It is a pleasure to share my experience with the disease (1963 build) and to read about the problems and solutions of fellow pwcf. They are all beautiful beings who handle cf in the best way they see fit.

Reading and writing about cf also helped me to apply the philosophy… Read more

Ah yes I remember now, Jenny. This sounds like a good scheme, and more regular than skipping one trikafta every other day. I always try to use medication evenly spread to not confuse the body, so that it can accomodatie to an even situation. Perhaps your scheme is what I will end up with as well. I will keep us posted.

Yes it must be hard to live in a situation where there is no adequate care available. One can only endure and surrender and look outside the box.

It reminds me a bit of the story of my brother Rudy, who died before I was born. He had CF as well, and in those days (1952 – 1959) even in a modern country as the Netherlands, not much was known… Read more

Gratefulness is a precious gift. Living consciously is practicing gratefulness every moment. If we do this wholeheartedly, it goes beyond practice and becomes our first nature.

Self-acceptance is not necessary. There is no self. There is only acceptance. And even that is an illusion, for there is nothing to accept and no one to accept… Read more

Good to hear you are having similar experiences with antibiotics, Jenny.

I remember we talked earlier on the forum about your new trikafta dosing, but can’t find the post and don’t exactly remember on what dose you are right now. Would you mind enlightening me? I am currently trying a lower dose too, which is every other day I take only… Read more

When I was a person, I thought I was in the body and the body was ill. I also thought that I was the one that had to keep the body alive by interfering, planning and caring. This was a lot of trouble and it felt like a curse. But all the time, what actually happened was that everything just happened and went along by itself and… Read more

This morning I looked at my medication cabinet, from where I run my little home pharmacy.

Suddenly I noticed a shift. The left section of the closet where I keep my anti-inflammation drugs, had advanced up to the middle of one shelf. And complementary, the right section where my antibiotics (anti- infection) drugs reside, has receded down to… Read more