Yesterday Ramon and I went to the LUMC, as we were invited to discuss the latest events regarding my kidneys.

We didn’t know what to expect of this consult, because we were told last May, no new trails would come any time soon, because CPH is too rare a condition.


We arrived early, so we went for a cup of coffee in the hospital’s restaurant. We were both so nervous. When I finished my cappuccino in one big gulp, I stared at the empty cup for a minute.

‘Well…. I foresee the consult will be swift and we leave disappointed.’ I said while swirling the remains in my empty cup.

Ramon looked at me with a dark frown. He said so little on our way to the hospital. His mind is taking him through every possible outcome…. Most of them being very grim.

‘What are you talking about?’ he asked almost annoyed with my bad theatrical acting skills.

‘Oooooh, don’t you see?? I’m being Sybill Trelawney from Harry Potter, when she’s giving a class on reading tea leaves from an empty tea cup.’

His annoyance grew bigger, but then turned into a smile. ‘You’re silly. Let’s go upstairs. It’s almost time.’


Just like Sybill, I made a false prediction. The consult lasted forever, with the doctor left us waiting to consult with the chief neurologist. When she came back, she told us that there was one medication I haven’t tried yet. I will have to stop the medication I’m taking now, and then start the new ones. They can be gradually be upgraded to the right amount that is needed. But…. There is a great change of failing, and no success rate is known, because my condition is rare. It just helped a few patients in a good way.


I left feeling like I had been punched in the stomach. I am utterly relieved there still is something left to try, but scared to my bones I would have to suffer great pain so short of time.


I will start next Monday. That gives me time to arrange things before I will have 280 seizures a day, and the greatest achievement will be; reaching the toilet when I need to go, and actually dump it where it ought to be dumped. No conversation possible, so feeling very much alone, even though Ramon will be working at home, to care for the doggies, and make sure I won’t suffer any danger. But the worst part of it all, is the amount of pain I will have to go through. I am so scared I won’t make it through a day, let alone two to four weeks of quitting the old and trying the new.

I will have a telephone conference in three weeks, but if the new meds aren’t working their magic, how am I going to speak to the doctor if I’m having seizures every five minutes?


I’m not happy. I’m not hopeful. I’m scared. I’m sad, and I’m angry.

If Ramon wasn’t there, I probably just waited till it would end, and keeping the meds who give me something of a life still to enjoy. But I want to stay with him as long as I can, so I will try everything, and even endure the greatest pain just to see if this one will work to give me more time with him and my fur-babies.

I don’t want to end with the words, ‘what if’. I want to feel I have done everything possible on things I believe in.