2023-04-16 10:32:30
30 minutes ago
General
Esther van Onzen (55) has had diabetes since she was four years old. Her health has deteriorated rapidly in recent years. A new kidney could help, but a donor is hard to find.
“I didn’t want to be sad or admit that I had limitations”
She doesn’t mean to be pathetic, but Esther lives a life full of inconveniences. “I am always unstable been. Every day I have to spray four times, but that’s the least of it. I find the extremely high and low blood sugar the most annoying. That’s why I get one regularly hypo. As a child I was often out of the world and had to be picked up off the ground by my mother.”
With a hypo, it is important to eat something sweet immediately. Usually her mother is the first to notice. “My husband was diagnosed with diabetes when he was thirty-eight. He eventually turned seventy-eight. So you could say that I am specialized”, says Marita, who is now eighty-three.
Incredibly cross
One of the consequences of diabetes – ‘sugar’, as Esther and Marita say themselves – is that patients themselves have difficulty recognizing a hypo. “Last weekend she was still close to it. We went for a bike ride. At one point she shot right in front of a few oncoming traffic. This is not good, I realized. I immediately shouted: Fuses! But she didn’t want to, didn’t think it was necessary. Finally we were brought home. But at such times she can be incredibly cross. It’s very intense at times. I know she doesn’t mean it that way, that it’s because of the circumstances, but I still have a hard time with it.”
Esther nods: “I have also slapped a colleague on the head. Later I knew nothing about it. “But it hurt,” she said. “Then you must have deserved it,” I replied. I’m just joking about it, but fun is different.”
In coma
Having a hypo too often causes damage in the body. In addition, a patient can go into a coma if a hypo lasts too long, something that often happens to Esther. Because she lives alone, mother and daughter – who live two hundred meters apart in De Koog – call each other several times a day and at fixed times. Marita: “If she doesn’t call at half past nine in the evening, I’m already in the starting blocks. I’ll call myself first, and if she doesn’t answer, I’ll go there. She is usually out of the world by then. Adding extra glucose is the only thing that helps. Even so, it will take at least fifteen minutes before she is a bit approachable again.” Esther: “And after that, only drunken bullshit comes out for a long time.”
It also happens that Esther gets a hypo in her sleep. So far she has always woken up on her own, but that can sometimes take hours. And she herself is still amazed at the havoc she caused. “When I wake up, sometimes I have renovated my entire room. I don’t know exactly how that goes. Did I try to resist? Or do I do that the moment I wake up again? In a hypo I can be so strong. It happened that they couldn’t get me into the ambulance with five men. Even the police were there. “Incredible for such a frail person with your illness,” someone said to me. It’s a kind of primal force, I think.”
Family ailment
Since Esther has a glucose sensor in one arm, which monitors her blood sugar, things are going a little better. “I also check more often now. Stinging is more reliable, but I sometimes stung ten times a day and that’s not nice. My fingers were completely broken. If my blood sugar is too low now, the sensor starts whining and I have something to eat.”
She was four years old when she was diagnosed, but her mother suspects she has had diabetes for some time, if only because she is not the only one with this ‘family ailment’. Her father suffered from it. And last year, at the age of 19, her nephew Pelle, a son of her brother Ivor, died of diabetes.
Sixty hours in the hospitality industry
Although she doesn’t know otherwise, Esther found it difficult to live with it for a long time. “I worked in the hospitality industry, sixty hours a week. And then of course I had to go on my own. I didn’t want to be pathetic or admit I had limitations. But because of that I did commit robbery. In retrospect, that was not helpful.”
Marita never condemned her daughter for it. “My husband had it too. It happened that an ambulance had to come to him during the night and that the staff saw him again on his bicycle the next morning. Its in the genes.” Esther: “The last few years I have listened more to my body. Yes, that’s a bit late. But I have to, otherwise I won’t make it.”
‘Donors of this are logically scarce. Her mother had offered to donate a kidney, but the AMC specialists thought she was too old’
Fifteen years ago, Esther was rejected for paid work. Nowadays she is at De Bolder three mornings a week, where she works in the laundry and is involved in the production of floorboards. “Monotonous work, but at least that’s how I do something. We also have a nice club. We fit together a bit. If someone doesn’t come to work, we call each other.”
Kidney function
Furthermore, it is mainly a matter of regular living and sleeping in the afternoon. Moreover, she is under strict medical control and for a while she even had to be in the hospital in Den Helder every month. Still, things aren’t going well for her. “The disease itself has not gotten worse. But I do decline. My eyes are so bad I can’t read very well. And my kidneys have also deteriorated rapidly. Last spring I still had a kidney function of around thirty percent, now that is seventeen. As a result, I am often dizzy, shaky and extremely tired. When I get out of bed in the morning, I’m just as tired as when I got in.”
If the kidney function drops below fifteen percent, she must be dialyzed. That is probably not possible in the dialysis center in Oosterend, for which there is a waiting list. Esther is therefore studying the possibilities of doing it at home. “There are two options. The first requires me to use a device for eight hours at night. I don’t like that, then you can’t even go to the toilet. It is also possible during the day, four times half an hour. That seems best to me. But it remains a temporary solution, because dialysis is not good for your body.”
A new kidney would be the best solution, but it also has snags. “You qualify if your kidney function is fifteen percent or less. But you first end up on a waiting list and then have to wait another four years. And besides, in such a case you get the kidney of a deceased person. It lasts less than one live nier.”
Donors scarce
Its donors are logically scarce. Her mother had offered to donate a kidney, but the AMC specialists thought she was too old. “I’m still fit. And I come from a strong family. My brothers are well into their nineties,” emphasizes Marita. “But that didn’t help. The maximum age of a donor is eighty.”
With the help of Cobie Daalder of Texels Welzijn, Esther has therefore actively searched for a potential donor via social media. She realizes that she is asking quite a lot – even speaks of “the madman who wants to do it” – but is no less serious for that. “I am fifty-five and still want so much. But I’m just tired now and really going backwards.”
Candidates have not yet presented themselves and she is not yet sure when they will. “There has to be a match are. In addition, a donor must be healthy himself. If someone reports today, it will be at least another three months before I have surgery. But I try anyway. I can’t help it.”
Potential donors can send an email [email protected] for more information.
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