Those who have followed my blog through the years know that I changed from a healthy person who was slightly underweight and who always looked pale, had a bit of asthma and iron deficiency, into a mom of 6 who was always busy.
I was diagnosed with hyperhomocystenaema, an amino-acid metabolic disease, but this could be managed with medication.
I used to ballet a lot and when I was 55 kg and enjoyed 5 times a week an hour of bicycling and some balletlessons each evening I suddenly got diabetes.
(So I don't believe in fairytales about being obese and become diabetic because of that.)
First they tried to manage it with a diet, but soon I got medication. To my surprise my cholesterol levels were rising, without any change in my diet. Ofcourse I got statins to manage it. But it worsened through the years.
Without any change in my healthy diet I got overweight.
Through the times I had a few times pneumonia, got shots to counteract the iron deficiency and took the rest of my meds.
Then, in 2014, my health deteriorated, I could walk less distance each week and I had pneumonia again.
The antibiotics didn't do enough, so I was sent to the lungspecialist who heard something strange and told me I might have a lung embolism.
To my surprise I was told I was not allowed to leave the hospital, but even though I couldn't walk 25 meters without resting, I had to go through the hospital to 2 departments for tests. When I arrived for the ECG she ordered the ECG appeared to be a mess, but I thought it was due to being so very tired and breathing with so much effort.
Nevertheless I took notes and mailed them our family physician and friend so he would know what was going on.
I was send home, because there was no embolism, with a referral to the cardiologist. And I needed a lung MRI.
It turned out my lungs were full of cysts.
It took 6 weeks before I got an appointment with the cardiologist.
He told me I wasn´t allowed to do anything to do with ballet or sports. I had to walk the stairs with long breaks between the steps. By that time I was not even able to walk from the front door to the car without assistance, so I wasn´t as shocked by his instruction as I would have been a few months before.
He referred me for a heart/ultrasound a few days later.
During the ultrasound I heard that one of the valves was leaking badly, and the rest didn´t sound well either. (It turned out to be dilated cardiomyopathy.) I felt faint and told the woman I wanted to sit up, but she didn´t allow me. I saw her press a button.
Luckily my cardiologist was on duty. He admitted me to the ward immediately.
We had a talk in which he told me I was dying and probably wouldn´t make it to the next morning.
The only thing he could do was to put all protocols aside and give me all medication he could give, without starting at low doses to prevent side/effects. I had to give special permission for him to do so. He said he was desperate to do so. My output was about 5%.
To my surprise I was very calm. I informed the family and a friend, and said my goodbyes.
The next morning I was still alive, which none had expected.
I was in hospital for 10 days and the cardiologist wanted to keep me there at least a week longer, but I felt like a caged animal and my daughter needed support as we expected the´d failed her final exams due to her dyslexia. So I was allowed home.
By then I knew I had more cysts in my body, including one in my liver.
My daughter passed her finals...phew, and during the weeks after that I lost a lot of weight. More than 30 kilo´s.
My heart improved gradually over time.
My cardiologist was gold to me. He kept me going and he understood me as a person. I've never met a doctor like him and probably will never meet another one like him.
After a year he suddenly disappeared. I knew things were going on in the hospital that were of no good to patients and there were massive financial cutbacks leading to the last arrived doctors moving to other hospitals. I was angry at the hospital that they didn't even give us a chance to say a proper goodbye.
The next cardiologist caused a "misunderstanding" immediately. I had to send him a complaint, we had a good talk, but I haven't seen him since.
I was supposed to be able to deal with my heartproblems, but I still felt ill, faint and tremendously tired.
Here you'll find impressions of my life as a mother of a few children with autism spectrum disorder and a person with heartfailure, some critical reviews of what going on in the world, including medical issues and political subjects. And everything else that keeps me busy.
I'm very honest about my experiences with autism, because only that way I can show how much of a struggle daily life with autism can be.
A series of posts
about lack of knowledge,
lack of concensus between disciplines
and the need for a formal diagnosis
with a psychiatric label
to get support for a unique individual
autism and (no) school.
One of our true autism stories Click the image.
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