We arrived in Spain a sunny day in September 2007. The first thing that needed doing was getting my paper work in order, so that I would be entitled to a family doctor. I registered with the municipality, became a citizen of Las Rozas, and got a family doctor to go see. Her name is Carmen, and she gave me a thorough exam, my first impression of her wasn't that good, because when she examined me, she grabbed my upper arms, which are quite full fleshed (keeping in mind that overweight I mentioned before) and asked if they were swollen, no, thank you very much, they are supposed to look like that. So a bit of a shaky start, but she's turned out to be ok. She referred me to a specialist in lungs at a hospital in Madrid. So that was good news. Then followed more paperwork, because I am Faroese and not Danish, and Denmark is part of the European Union but The Faroe Islands are not, there was a doubt if I could receive free treatment as all citizens in the EU get. But since I have a Danish passport (we can choose between Faroese and Danish, don't ask me why) I got the Spanish social security card, and what a relief! I was accompanied by my mother in law to the hospital in Madrid, Puerta de Hierro(my boyfriend had to work) where I met with a lung specialist and they performed respitory tests on me, I don't remember what my FEVs was, but I remember coughing a lot of mucus up. The specialist was nice, a young woman. She said that she didn't think that I had CF. But to rule it out, they wanted to test me for CF and for Ciliary dyskinesia, becasue thoses illnesses are related to bronchostasia which I have. So I got a sweat test performed, which came back on the limit, then they took a second test which was performed wrong, so they did a third test, which again was on the limit. Then I had a kind of surgery to rule out Ciliary dyskinesia, where a doctor took out a sample from my nose, auch! that was uncomfortable. I started to do physical therapy at the hosptial, once a day for two weeks, the trainer is a friend of my boyfriend, and quite good looking I rode the bicycle, had weight put on my legs to lift them and walked on the treamill (I liked seeing the indicator showing how many calories I was burning off) In April 2008 I stared working, and going to checkups at the hospital once in a while for different test and things. As the sweat test I took were on the limit, they took a sample of my blood to do a genetic test. The result of the Ciliary dyskinesia, showed up negative (or I don't remember exactly what happend with that honestly). I was referred to another hospital in Madrid, Ramon y Cajal, which specialised in CF, and I met my doctor, Doctor Luis Maiz, and nurses, they are really nice people, which I see about every 3 months. I rememer my boyfriend saying that "you don't have CF" becasue I am not as skinny as those with CF! But I remember when the whole CF was mentioned, that it made sense, I somehow knew that this was it. There had to be an explanation to why I had always been sick, and maybe this was it? One day in spring 2008 there came a letter saying something about the results of the CF test. It looked like I was the carrier of two genes, but the result was unclear, so they had to send the test to Barcelona, becaue there is no such facility in Madrid, and that took quite some time in the waiting. I remember being in a sense of shock, oh God, I have CF, I am going to die... But that quickly subsided and I went on with my life.
After having taking holidays in The Faroe Islands in September, we returned to Spain and shortly after a letter came with information from Barcelona. I didn't quite understand what it said, and we had to wait until my doctor's appointment to get the results. In October 2008 (a year after moving to Spain) I got the confirmation from my CF doctor, that yes I have CF!
In October 2008, I was diagnosed with the CF mutations F508del/R117C. It was a kind of relief, finally to know what I have. The doctor said that I was going to be able to lead a normal life, with treatment. He said that there are over 1500 different types of CF, and mine is a "mild" one. As long as I do my treatments, I should be fine. He told me what was going to happen now, I was to take antibiotics through an inhalator attached to a machine. Antibiotics and pulmozyme. And I was to do physical thearpy, which a physical thearpist was going to show me how to do. The doctor said that the nurses would provide me with the medication and needles and injections. It was overwhelming to say the least. My first reaction was "no", I'm not going to do this, I'm not going to take medication morning and night. It's going to take too much time, I already get up early in the mornings to get to work, and this means that I have to wake up even more eary, no, no, no. But I accepted the medication and needles and other stuff, that we were provided with, free of charge. And off home I went, with my mother in law. Between us we carried a bag, as big as Santa's bag of christmas gifts, with all the joys of medication inside. When my boyfriend came home, we started to look at all we had, and where to store it and how to manage the needles and things. First we tried with my mother in law, to get the medication out of the little bottle with the needle, but try as we liked it just didn't work, then we asked my father in law, who is a scientist, and knows how to work needles, and he showed us a few trick or two, firstly that we needed to take the lid of the bottle before placing the injection needle in it! At first I thought that I could never be able to prepare my own medication, I'm not a nurse! But with time, it has become a habit. My boyfriend does most of the preparation, he's like my own private nurse and my first "no" to the whole treatment has become a "yes, it's something I am going to be doing the rest of my days". First we got to borrow this really noisy machine from the CF foundation in Madrid, it was slow and noisy, and it took me 30 min. to do my medication, where it now takes me 10-15 with the e-flow (my parents bought it for me) Now my medication consists of: Symbicort Wait 30 min.
Hypertonic Saline 7 min
Physical therapy 5 min
Pulmozyme 5 min.
Gobemecine 10-15 min
Nasal spray at night Oral antibiotics if I have mucus and feel bad Nasal rinse if sinusis are acting up I leave home at 07:45 in the morning, and return at 19:25 at night, as things are now, I only have time to work, eat, and do medication and thearpy. But I hope that things will change for the better soon, I am trying to make a few changes. CF is progressive, and so is my life, so stay tuned.
