Nicola’s diary during disease
(translated by Alessia Gioia, Napoli)
Before I began to be ill, I mean all along, I was sure, as many people, I could never be ill; of
course, I have already been ill, very often I suffered from gastritis and headache, but I have
always solved these little problems, and I was sure that a kind of strength inside me was able
to solve them without help.
Regarding the big health problem or surgical operations I was calmly sure that there was no
reason for happening something to me if nothing happened to me till then – a kind of vaccine
against health problems-.
But I met the death: a gymnasium classmate of mine drowned in the pool. I remember I chat
with him about one thing or another in the morning; I still remember his girlfriend despair,
that day she didn’t want to go out with him because of a stupid argue and she convinced him
to go to the pool.
Since then I accept the death as the price to pay for that supposed disease invulnerability.
Now I am still ready to accept her without fear.
As soon as I begin to have stomach problem I thought: «Here we are! During the last years
you overdo with drink and food. If you break these habits you will feel good in 15 days ».
It was November 15th. I did it; no more alcohol, wine, fried food and just a little bit of the
rest; should I go to the doctor? I went.
The doctor knows me for twenty years, he knows me and the possible causes of my disturbs;
this is good since he is always sure of the diagnosis; he treated it as a colitis.
But it was wrong; the pills I took were useless. They just helped my inside strength to solve
the problem; in the meantime I kept to be on diet, but I still felt bad; I was on diet also during
Christmas, but I couldn’t see any amelioration.
It was time to go to a Professor. My family knew him but they tried to go to him as little as
possible since, even if he always makes perfect diagnosis, he normally uses a lot surgical
care.
The medical examination lasted 45 minutes, he checked me up and when he touched my
stomach he said: «It’s the sigma, we have to investigate», he prescribed just one test to check
on that point.
The intestine radiography was disturbing because of the barium insertion and since the
intestine had to be empty.
My spirit of endurance went out like if I knew that test wasn’t the only one neither the more
painful.
My pain threshold was very high, I could tolerate a cigarette burn on my arm as I showed
some years before.
The radiologist, trying to hide his worry, told me to go immediately to the professor. There I
said to my wife: «Antonella, this time they are going to open me». Antonella didn’t say
anything, she just hugged me and I could see she was upset.
My wife mood has been the biggest problem for me; I have always protected her, who is
going to do it now?
Actually Antonella will make a very good job in the critical moment of this story.
There ere no doubt; I had to be operated; also the Professor told me, he was an University
professor, surgeon of an international renown university, specialized in transplant.
I should overawed by him, but his cordiality and kindness made me feel comfortable. I was under his assistant charge that will follow me during all my hospitalization and after. First of
all they made me a rectoscopy, it was painful and it caused a haemorrhage.
The doctors diagnosed a polyp. I need a surgical intervention.
I had a CAT scan to check if there was a cancer.
Now my parents were very worried and upset and it was difficult for me to don’t be affected
by them.
Fortunately the CAT outcome was negative; on February 26
th
I was hospitalized.
That day I was very annoyed and I didn’t hide it. Two medicine students came to me. They
had to report my family and my past and actual health condition; this was funny, for example
they asked me how many years my mother breastfed me; I didn’t answer, and I thought about
the future medical class with sadness.
The first night was the most difficult; I didn’t sleep, the waking-up was at 6 o’clock, the first
of a long series: thermometer, preparing the bed to people just operated, changing the urine
container ecc. ecc.
I don’t know if there are medical reasons for a waking-up at six in the morning, but I think it
is traumatic to wake up at six to do something that it should be done after an hour.
Breakfast at 8; then, the therapy, which consisted in pills; rarely they change the bed linen, if
you want clean pillowcase you have to bring it from home; you also have to buy the syringes.
After the breakfast, the doctors came to visit us, lunch at 12 (I have never eaten anything), at
4 o’clock the visiting hour for relatives, therapy at 5, dinner, (see above), and at 11 o’clock
the therapy again. As you can see, the day was cadenced by these activities and they
influenced the life in hospital; you have nothing to do, just wait; if there is a delay it causes
worry.
My first contact with one of the big ill people, as I call them, was Renato.
He was from Rieti, hospitalized since 11 months, (I say 11), waiting for a kidney for the
transplant.
For 25 years he was also suffering from diabetes and he needed insulin. Moreover, the
diabetes damaged his kidneys (he need dialysis on alternate days), and made him almost
blind.
In spite of everything, I have never met a man with this will to live, good, polite, he was able
to comfort the other sick people, and he wasn’t a burden to anybody.
He checked the diabetes with a mini computer that he programs himself, it injected through a
needle insulin inside the organism. I saw him upset only once, but just for a moment.
One day doctors told him to be ready, maybe because there was a kidney for him; but in the
late evening he knew that the kidney wasn’t suitable. I cannot describe his disillusion, a
vanished possibility, maybe other months in the hospital waiting for the kidney with the fear
of death.
Immediately he recovered, and some days after he was like before; then it was the time. The
wife was upset, of course she thought of the risk her husband was going to face.
But it seemed to me he was smiling emotioned for that gift. Of course he thought of the risk,
but he was scared of loosing again the opportunity and quickly went on foot to the operating
theatre.
Obviously, Renato was discharged with an extraordinary recover.
Alberto, instead didn’t receive my esteem, I am talking about him to compare him to Renato.
He had immediately the kidney transplant but after the operation he had the rejection and the
following operation to remove it.
For long time he was under uncertain prognosis because of a serious infection; he had five
operations and he stayed in the hospital 5 months. Even if he was suffering, he wasn’t congenial to me. Alberto was the typical enriched, head
of a little family management company, and he wasn’t able to improve his popular roots: he
was unpolite with everyone, he used trivial and heavy expressions and, sometimes, also
offensive especially with the nurses that, actually, didn’t deserve it. Also the doctors receive
some affront.
Alberto didn’t learn anything from his disease, from the meditation between a dialysis and
another, before the hospitalization and he didn’t even understand his situation during the
hospitalization where his money couldn’t help him.
The seven days, waiting for the operation, went neither quickly or slowly, just went, among a
test and another I was preparing for the operation. I begun to stroke up a friendship with
nurses thanks to some tip and especially to my good manner, kindness and my tactic based on
disturbing as little as possible and without demand; I saw the results of this policy after the
operation, also from people that at the beginning were more disagreeable.
I have to plead this class’ cause. I have never met nurses of other hospital or ward, I don’t
know if what they say about them is true: about their scarce education, superficiality and
indifference: characteristics that maybe have been found somewhere else.
My friends nurses were professional and understanding with everyone: I still talk about nurses
singularly.
In this way the operation day was drawing near.
In the meanwhile, I used my spare time to make a self-examination to fortify my spirit in
order to survive the waiting. I do not mean physically (as I said, I tolerate pain), but
psychologically.
So I felt more relaxed, without discussing with people who have different point of view,
without thinking of my job in bank that sometimes upsetted me because of the contest you
should have to progress.
I shouldn’t feel guilty if I couldn’t go to job.
Common feeling among the sick people waiting for the operation is the willing to be operated
as soon as possible; I was raring too.
The operation was planned on Friday 8th March. I thought I would have spent Wednesday
night awake and worried; but I spent it sitting on the wc: they gave me some horrible
purgative to empty the intestine; they also put me the drip-feed so I run to the bathroom
dragging the drip along the corridor. The scene was funny even if during the night I was
collapsing; fortunately I was lovely attended by my wife.
The day after, at 9,45, I enter the operation theatre and I still felt the kiss of Antonella on my
lips: they made me lying on the operating table…
«Nicola, can you hear me?» someone asked me. «It’s over, wake up».
I probably make some move because he didn’t keep on talking.
It was 5.15 when they brought me in my bed.
The first face I saw was Antonella, then my sister Maria and a friend of ours named Franca
that I didn’t expect was waiting for the operation result. They told me I had a relaxed face; I
also darted an ironical glance to my sister when she asked me how I felt.
First night my cousin Maria Tecla attended me, she was a medicine student; sometime she
felt my pulse and wet my lips. I didn’t move in order to avoid the pain.
I was intubated, I had the catheter, a tube from the nose to the stomach, two drainage tubes in
the left hip. I spent four days like this, and I didn’t remember anything; I was to concentrate to
recover as soon as possible.
But I notice the suture wasn’t where it should be; it was from the sternum to the groin getting
round the navel (thank goodness they getting round, I love my navel); I also feel a kind of rod under the sternum, nobody told me what it was. They did it after three days when the bandage
was removed, I could see though my eyes: they made me a colostomy to avoid that the cut
intestine could infect. That is they had to extract a part of my intestine to let get out the
motion picked up in a plastic bag pasted on my skin. The recovery of the normal functions
will be after one month thank to another operation.
I was annoyed; the time went forward and I had problems I didn’t expected; I though after the
operation I didn’t have any problem and thanks to my physical strength I went home in some
days.
I also was thinking: I didn’t expect it, nobody informed me before. This made me feel upset
and nervous regarding the medical structures and doctors, very often we are just number, the
number of the bed.
They prefer the subject (of the experiment) doesn’t know what is happening so he cannot ask
questions and annoying discussion for the man of science. Maybe inside they still have
something of the old sorcerer, wizards, quacks and healers that thought to cherish occult
science, hidden to don’t loose the privilege guaranteed by the people ignorance.
We denounce a mechanic if doesn’t screw a bolt enough damaging our car. But rarely we do
the same to the doctors, they shouldn’t wrong though since they have paid a lot. But they
enjoy of a kind of immunity.
Maybe we are all victims?
Anyway, I accept this news without problems.
The fourth day, after the operation, they remove the catheter and the tube in the nose; I could
breath better and I was really happy; this calm lasted just some hours; at ten I suffer for a
renal colic, (at the right kidney); I had two colic in December so I knew very good the
symptoms; but this was the most painful; I said to my relatives to go home since I felt better;
the doctors I called didn’t come, I felt lost and helpless. Suddenly Franca arrived; I was never
been so happy to see her; I told her to call my relatives that immediately came, but just after
some time they obtained an pain-relieving; the young doctors wouldn’t take the
responsibility. I passed also this test; I was almost proud of these complications, this story
wasn’t ordinary anymore and after I could boast.
During the following days I begin to get up and walk, and I was still sure to go home in some
day after the second operation.
On March 17th, Sunday, Arnaldo was hospitalized.
Arnaldo was an employee of the same hospital, he was 52 years old; I didn’t like him because
he didn’t want to be subject to the rules maybe because he felt home.
The day after he was operated. A kidney was removed but, as usual, they didn’t tell him; two
days later the tubes were removed and they let him seat; he seemed normal until Arnaldo
started to feel ill; he breathed with difficulty, certainly because of the smoke (all the members
of his family were smokers). Immediately, the doctors rushed. At the beginning the usual
doctors came, then the specialists: anaesthetists, cardiologists and others I couldn’t recognize.
They brought a machinery to suck up from the lungs; another sophisticated machinery to
check the heart. In the meanwhile they gave him the oxygen only as palliative. I could see the
doctors very worried. I saw that Arnaldo was not worried not because there wasn’t a reason,
but because he was too concentrated in breathing. I was deeply shaken, and I thought to
myself that we are really alone in particular moment of our life such as the death. In the
evening they brought him in the intensive care room. There, he lost his senses. Five days later
they brought him back in his room and he was very exhausted. Arnaldo’s wife, Mrs Ada,
spent days and nights close to her husband with extraordinary devotion, sacrifice and
strength. Very often, Ada confided in Antonella. We discovered that a year before the same medical team that operated Arnaldo and me, transplanted the some time later to her daughter
Letizia, a beautiful 30 years old girl and mother of a 8years old child. Letizia. Because of her
worries for his father, lost the use of her pancreas and she started again to take insulin with
very high glycaemia peak. Let’s imagine the anxiety of this girl: a young mother that hoped to
have solved her health problems thanks to one of the most difficult interventions since there
were little possibilities for the taking root of pancreas. Whereas, problems came back because
of the anxiety and affection for her father. About love and devotion, I would like to remind
another patient: Pietro, a Calabrian mason, that gave his kidney to his wife. This seems to me
a so absolute gesture that it is still hard to understand for me.
The psychology of a donor is very particular. Even if he is not diseased, he needs to think as
he was. He needs to be operated even if he knows that he will be in danger.
Sometimes, Pietro made me smile because he had fear of the injections. He never bragged
about his gesture, he just said “I hope it will be useful”. Unfortunately it was useless. He told
me this in tears some time later. On 25th March, my birthday, I was really angry: I would tell
to go to hell the first person who had wish to me many happy returns. They did not do it since
they didn’t know how to behave. As a matter of fact, that day a new I begin a new chapter of
my life.
In the morning I had some urinary system burn. I informed the doctors that naturally told me
it was the brace (a slim plastic tube inserted in the urethra, between the left kidney and the
bladder) that they put me during the intervention because they said the urethra was inflamed.
The day after they will remove it.
Two days after they brought me in the infirmary. The urologist removes the brace from the
bladder through a cystoscopy.
While greeting he said: “ Just as well we took it, otherwise we should have operated”.
Telling this story seems nothing. Only who experienced it knows how painful it is; during a
break, I asked to the urologist, with the instruments still in his hands, if he had never
experienced this treatment and, therefore, if he knew this pain.
He said no, a little be embarrassed. I came back in my bed. I didn’t eat. Then Antonella
arrived, and I felt better.
The day after was the decisive one (I still believed so). They had to verify if the intestine was
already closed, through a radiograph with barium. I was lying under the x-ray, they just
introduce the barium, and a whitish liquid already leaked form the tube. There was no need to
be doctor to understand that it as barium leaked form the still open intestine.
I didn’t even wait for the radiologist answer, I was already resigned to still wait for coming
back home.
I found barium also in the urine. I didn’t take notice of this because I thought it was the
normal intestine assimilation process.
Sometimes, the drain that was empty until that day, started to fill with liquid; these were
worrying signs. But I didn’t know what kind of liquid it was.
I reacted with confidence, I didn’t was too much worried. After all the doctors minimized and
didn’t unburden.
An afternoon, during the visiting hours, a doctor came to insert a catheter. He was very young
but he seemed to promise well. He told me a lie to hide the truth. He entered the room with
all the material required, the visitors went out but a friend of mine, Donatella got a shock and
was going to faint. It sounds incredible but I had to comfort her and this made the bystanders
smile.
About the liquid, my wife keep on saying it was urine, but she didn’t have sound arguments
to prove it so she only made me nervous and distraught.
