Confesiones por email “Así nació Yrene Yuhmi”
I’ve been thinking a lot these days, and I did not dare to write to you … I still have very bad memories of when I did not know what I was suffering from, and the anguish is very strong with those memories.
This is in my case, which is different, although each case is unique because there are many types of CF mutations, and that makes each patient different. Broadly speaking, CF is genetic, it produces a degeneration of the whole body, because it affects at cellular level. You can find a lot of information on CF federation site or at Wikipedia!
But to get to the point, and roughly, it’s diagnosed at birth, and affects the lungs greatly, and the digestive system, pancreas, liver, genital tract, skin, muscles, bones … In CF, there is an excess of excretion or mucus in all the organs, for example, our sweat is very salty, that’s why when we talk about CF we hear the expression “salty kisses”
we lose a lot of salt, so we need a supplement, mostly during summer. The pancreas does not produce enzymes, and sometimes, unfortunately, neither insulin (nor endocrine function nor exocrine) so you have diabetes in addition.
The liver is also tired and transaminases can be altered, the genital flow is constant, mucous; in men there is a high probability of being sterile … the malabsorption causes us to lose many kilos with great ease, and this is a problem above all in time of growth, that is why it is important to be diagnosed immediately.
A few years ago the CF test was added to the others tests that are done on the baby’s foot. But I was born in 1976! And whatever the reason was, I didn’t have a diagnose.
I was a healthy baby, but my mother tells me I had some episodes of being very thin, at age five, and then at 13, I started with constant diarrhea. They said that it was lactose intolerance (in CF you can have celiac disease and intolerances due to digestive problems, they are all secondary diseases due to the cystic fibrosis)
My mother fought hard to know why I was always sick, losing weight, with diarrhea, indigestion always, nausea but never vomiting, a state of eternal nausea … many years of struggle, going to different doctors, hospitals … Tarragona and Barcelona … finally, a doctor specialised in food allergies and paediatrician, working in Barcelona, Dr. Jaume Botey and Sala, very old, wise, a man with a big and strong constitution, and ethical talking totally impartial, he made me “the test of sweat” and it gave positive.
I had CF, and only knowing what I was suffering from, despite being an incurable and mortal disease…
It made the whole family breathe easy!
The bad thing was the research stage, which many doctors believed I had anorexia (the 90s were the years of awareness and extension of what appeared to be this disease) and although all psychiatrists and professionals completely ruled out I had anorexia, a couple of doctors (no psychiatrists) did not want to budge.
During the year 2001 I had to be hospitalised because of cachexia, I weighed only 30 kilos: it was a hell for me… (I did not recognize myself, it hurt me to look at me in the mirror, I did not go out just because I was scared of my appearance, or of people whispering about me without dissimulation, to the point of making cry my little sister…I recall this situation was in a clothes shop called “Stradivarius”
I remember it because we mom and sisters, could almost never go out, and she was 13 or 14 years old, (the age of going with her big sister to shop and enjoy those times and that age …)
No matter how hard I tried to gain weight, I was plummeting. First the doctors thought it was an immune disease of the liver, but it was not like that.
In Barcelona, the head of the plant, a big fish of Vall d’Hebrón hospital, was the digestologist who took my case.
She did not like the fact that Dr. Botey gave me the diagnosis…And who knows why, she always seemed angry with me and my mother. She was a mean and arrogant woman.
One day, fed up with my case, she told me that if I kept going like that (?)
she could not do anything.
I said: “I do not want to continue like this either, that’s why I’m here,
you have to help me”
she said there were more doctors in Spain,
and we made the consultation at two.
“If you do not save me, God will save me,” I replied, crying.
And she screamed with arrogance and despise, “well, so God do save you!”
I left crying and ran without knowing where inside the digestive plant,
and my mother did not know whether to follow me, or continue trying to talk to the
doctor, at that absurd and nightmare-like “end of the consultation”,
without further hope, she realised her period just came suddenly: and It was a
Once in Tortosa, I was admitted to a clinic, and there they put me a tube to be fed by vein, do not know what is the correct name in English, but it was a tube that ran from the intravenous feeding machine, to the heart, from the back of the elbow.
In that clinic they could not treat CF, so they sent me to Vall d’Hebron on the condition (I asked for) of not even having to see “the evil female doctor” in question. The deal was established and they took us there by ambulance.
As soon as I arrived, a doctor and around ten interns came in, examined all my belongings, treated me like someone despicable … and so started our nightmare:
The plant manager M.D. did appear, they broke the deal…
The summer of 2001 was the most eternal and terrible season of our lives.
They did psychological tests to both of us, my mother did not have to go through that, but anyway they did it… instead of treating my CF, they were desperately looking for an eating disorder. The psychiatrists and psychologists continued to argue that it was not like that, that I was depressed by my physical condition and by being always sick.
They took me to the hardest Psychiatric area, the Pedopsychiatrists interrogated us both, in separate rooms, for a few hours. We had already gone through hard questions in Tortosa. It was as if I was to blame for what was happening to me.
In pedopsychiatrist area, the doctor, a well known eminence, determined that I did not have anorexia neither anything similar.
In any case, the digestive doctor did not want to hear it.
She came to the room at eleven o’clock or so, with a bunch of interns. Everyday.
One day I remember she taking my arm and squeezing it hard:
“Do you see “this”? She does not have muscle mass, as she does not eat, her body does not have any fat ”
“Sorry, but I do eat” I said, and I looked at them, trying to find someone to help me, someone who believed me.
“Leave her alone, don’t mind her, she’s crazy” the doctor replied without any doub, almost throwing my arm aside.
“She is crazy” words like those made me swallow the tears every single day, being aware that I wasn’t getting any better.
Then I got transferred to a “special room” where just one day before was hospitalised an old man who has lost his mind.
When I gained the nurses trust and friendship, one of them told me that there was a listening device there, and warned my mother and me about it…then we really realised things were really going so bad, and I understood that I wasn’t going to get well, I will never be cured, not on that room.
The other patients at the same plant didn’t eat too much, I remember one who always refused the hospital food and ate cocoa powder like a kitty.
Their intravenous machine was at full throttle not like mine, so they gained the weigh quickly and got out that horrible place in no time.
The treatment was really really different. I didn’t understand why. I couldn’t.
I asked forty voluntary discharge since the medical treatment wasn’t working and wasn’t the adequate. It was at half September. I wanted to be back home, I didn’t want to die there, if it was going to happen, I preferred to be at my own bed.
The struggle until beginning of spring of next year was strange, because I felt with such a will of living and getting over all that, and little by little I gained weigh, around March of 2002. But I was swelled like a balloon. My tummy was like a barrel, my skin hurt, there was a lot of liquids inside me. Doctors didn’t know the reason, or didn’t wanted to say it to me.
The point is that I was almost recovered around June. It was what I call
a miracle. (I know it’s not something people use to believe in, but I do)
But what happened? Now I have some idea.
During my stay in the hospital, we met an old lady, quite rich, who always praised the evil doctor who now, I call lady H.H.Holmes*
While she ask tacs and other tests on me, I listened to her egocentric talk with other doctors who looked like puppies liking her shoes to get a candy.
She was studying and trying to do a new pancreas transplant, something that would made her the top of the top on medicine. Or something like that.
I wondered why she was so sure I was going to die.
She really seemed she wanted me to fail on my recovery. Even gave me all pills or medicines with lactose or gluten on purpose, since I had the diagnose from a doctor she seemed to hate.
The important point is that f I died she could have a pancreas which could made insulin, so it was perfect for a transplant.
Perfect for her Plan? Of course, all of this is just a guess, a conjecture. I can’t be sure about it, just something seems to make the whole puzzle complete.
And now, right in this sadly socially and politically rotten Spain, I see all the xenophobia I have tasted since my childhood, become a finished canvas easily understanding. I lived in a region were Castilla and Andalusian emigrants were and still are hated and looked down.
I was in bad hands, but those hands were M.D.
That lady H.H. Holmes made my family suffer to an extreme you can’t imagine.
When I was almost recovered from liquids and new body changing (I was like a slime turning into a human!) I went to see the nurses who tried to know me and changed their mind about me, since they were told to do as I was a prison burglar or some kind of monster.
They saved me. I am so thankful!!
On the corridor of the same plant I was hospitalised, we chatted happily about my recover. Then, lady H.H.Holmes appeared from behind, and everybody face changed colours. I didn’t even turn out. I felt a chill all over my back.
She said, “oh, Irene, you look amazing” as if nothing had happened.
I just said “Thanks to God” keeping myself towards the nurses.
Lady H.H.Holmes vanished after being ignored.
Other patients had to pass through what we passed.
She just picked her victims for some strange reason only she knew.
I don’t know where is she, what she does, and I don’t care.
The past is filled with memories, but there is no room for her neither for the bad moments.
From bad moments I got good experiences. You can get some funny anecdote from terrible experiences.
It’s what I want to think, because it happens to us at home.
Now I keep the struggling!
And if our Lord gave me another chance, must be for some reason.
I want to keep it up, love and live!
And make some justice too, someday…
So then, I wrote a long letter my friend!
And it’s only a glimpse of the whole thing,
Thanks so much for reading my lines.
I hope you got an idea of what happened to me.
Thanks for your concern and interest about this disease Cystic fibrosis,
I wish more people were like you are!
And just how I always use to sign,
Love & Peace
Yrene Yuhmi (Ren)