Diary of a hospital
Seven May 2004: by serving at 13, working as a nurse at the ENT Clinic of the Hospital San Martino di Genova: her colleagues note that I have trouble keeping your head up and I can stand with difficulty.
I also have difficulty swallowing liquids and a lowering of the left upper eyelid.
I come to the emergency room accompanied by a doctor in the ward and there, after a neurological examination is formulated on suspicion of myasthenia gravis.
To clarify the clinical picture is followed by a chest CT scan with contrast that highlights the presence of a thymoma, (tumore del timo), di notevoli dimensioni.
Il giorno dopo vengo trasferito in Clinica Neurologica.
Comincio ad avvertire il disagio di essere un paziente, sono passato da un giorno all'altro dalla condizione di operatore sanitario a quella di ricoverato; nel frattempo mia madre, che era a casa, affetta dal morbo di Alzheimer e che io accudivo, muore, ma io non posso ottenere il permesso di lasciare l'ospedale in quanto le mie condizioni cliniche non lo permettono.
Credevo, sino a qualche giorno fa, di essere affetto da una sindrome ansioso-depressiva, ora scopro che la stanchezza che avvertivo durante le attività quotidiane, e soprattutto durante il lavoro, era causata non da problemi psicologici o psichiatrici ma bensì dalla myasthenia, which causes a general feeling of fatigue. Neurology
In fact I get more blood tests, in particular the search for autoantibodies: myasthenia is in fact an autoimmune disease, the immune system, crazy, produces antibodies against its own body structures belonging to the "self", as they say instead of simply producing them against the "non-self", ie external agents, bacteria or viruses that may be. In particular
in myasthenia antibodies are directed against the acetylcholine receptors in the neuromuscular junction, the vital point of connection between nerve and muscle.
I discover with horror of having to undergo intervention surgery, a thymectomy, namely the removal of the thymoma.
It seems that this intervention can greatly improve my medical condition.
Moreover, as I was explained by the thoracic surgeon who comes to visit me, there is a risk that the cancer, which is already quite large, compress vital structures contained in the mediastinum, the space between the two lungs, where there are bodies as the heart and esophagus, and large vessels like the aorta.
The surgeon explained to me how the surgery will be performed: a sternotomy, immediately behind the sternum and is the thymus, which will be removed.
The thing that worries me more is, however, the postoperative course, as I explained that there is a possibility that should remain a few days in an intensive care unit because of respiratory problems could be: in fact the disease can also cause a deficiency of the respiratory muscles and therefore the need for assisted ventilation.
be transferred temporarily in the department where I work as a nurse in the ENT Clinic, where I'm graciously hosted waiting for a seat in the surgery department where it will work.
The main organizational problem seems to be the availability of a bed in an intensive care unit, where should I stay a few days after surgery.
Meanwhile neurological conditions worsen: arose a diplopia, double vision, due to a deficiency of the oculomotor muscles.
I can not read anymore and it depresses me a little, so much so that even begin to have difficulty eating.
is that I consulted a nutritionist prescribes nutritional supplements.
have passed since the day of my hospitalization, almost two months.
The days pass slowly, I get bored, the only moment of joy in the daily visits of my companion, who also takes care of all the bureaucratic problems associated with the death of my mother.
finally arrives on the day of transfer to the surgical ward where I work. The night nurse intervention
prepare me a cup of chamomile, I can not sleep.
the morning, after saying goodbye to my partner and two colleagues who came to see me, come together in the operating room, are peaceful.
I find that many want to see my speech, a doctor who was invited to go to attend another operation said: "I thymoma I did not lose."
It is indeed a rare disease, patients with myasthenia gravis in Italy are only 15000.
I wake up in the "box number four" on-resuscitation adjacent operating rooms, are intubated and attached to a respirator, a central vein was cannulated to administer drugs and food, my vital functions are constantly monitored through an impressive set of tools.
In the afternoon, at my request (I can not speak, of course, but communicate by signs and writing on a sheet of paper), I'll stub that is removed the endotracheal tube which allows ventilation.
but I am very happy, they spend the minutes, I realize that I breathe with greater difficulty calling for help is the head nurse and a nurse, I ask them to allow me to call my sister to send one of my colleagues to keep me company, I someone stay with me, I am told that this is not possible, the situation worsens breathing, now I can not breathe, become unconscious, vengo reintubato.
Sono rimasto senza tubo endotracheale soltanto qualche ora.
Essere in ventilazione assistita è una sensazione molto strana: alcuni atti respiratori vengono effettuati autonomamente altri, in particolare quello che da un anestesista viene definito “il respirone”, vengono imposti dalla macchina: questo naturalmente dipende da come viene impostato il ventilatore meccanico.
Io riesco a fare due, tre atti respiratori autonomamente (la macchina accompagna e aiuta la mia respirazione), il quarto atto viene provocato dal ventilatore ed è molto lungo e profondo.
Non posso muovermi, sono letteralmente inchiodato al letto.
Il pericolo principale, in rianimazione, è rappresentato dalle infezioni: In fact there are too many routes of entry for germs: the urinary catheter, central venous lines, arterial catheter for continuous measurement of blood pressure.
periodically form of phlegm in the airways that obstructs breathing: then I must call the nurse who cares for me to be drawn: the fan is temporarily disconnected and he inserts a suction catheter through the endotracheal tube to remove secretions .
The curious thing is that in intensive care, to my surprise, there are no bells: the guard by the nurses is described as an "active guard", that is they who must give an account of the patient's problems and remedy the situation, in contrast to "watch negative" which is done in the normal ward where I had worked so far.
I understand these rules but I think that for a conscious patient should be made available to a wake, not being able to speak, in fact, the only way I can attract attention is to remove it from the finger pulse oximeter, a sort of thimble that monitors the concentration of oxygen in the blood after a few seconds the alarm sounds and the nurse arrives.
Time passes, I come stub and transferred into the care unit subintensiva.
Even here, however, repeats the problem of respiratory failure: while the head of department, my cappezzale, I scream to breathe I lose consciousness again.
When I wake up I see that the anesthesiologist intubated me that, above me, is airing an Ambu bag, I can not move anything, not even the fingers, I hear the voice of my companion, crying, asking my news I hear the comments of doctors and nurses, with horror hear the phrase "if it goes on like this we have to do a tracheotomy," I try to stay calm after the breathing difficulties that I experienced the mechanical ventilator is almost a blessing, it gives me security, takes him to let me do the breathing force and effect.
At night I can not close an eye, even in the daytime, and it goes on for more than a month.
'm exhausted but I can not fall asleep: they are too busy to monitor what's happening around me, alarm bells ring continuously, a drip infusion pump that is finished, the oximeter that has moved from his finger, a monitoring electrocardiogram electrode that is removed, the blood pressure is too high or too low, the heart rate increased, and every alarm I bounce and I get scared.
When my friend comes to visit me and I relax moments where I literally faint from sleep, but it only takes a few seconds, now I wake with a start, I do not let my body leave to sleep even for a minute: there are too many things to keep under control!
ask my girlfriend to marry me, you agree: marriage will be celebrated in resuscitation and, according to doctors and nurses, is the first time that such a thing happens.
I know you did it to give me strength, a reason to try to heal, to get me out of the "box number four."
the morning of July 26, 2004, the day when the marriage is celebrated, I am stub for the occasion.
The ceremony is very rapid, the nurses take pictures, we are all moved, I, the bride, witnesses and friends.
Thank you kindly for marriage to my partner, now my wife, who enjoys a double allowed to have input into scheduling more flexible resuscitation: I look forward to the time of his arrival, I want to talk to me constantly, telling me all the events for what now consider " life outside. " Meanwhile
continue the investigations are carried out investigations as diverse as a new CT scan with contrast, ultrasound, electrocardiograms, a bone marrow biopsy (suspected myeloproliferative syndrome), a bronchial aspirate (for which I am, thankfully, asleep) , visits the specialist neurologist, cardiologist, internist, ophthalmologist, and so on.
is suspected, among other things, a thrombosis of the vena cava, and that is why I are administered anticoagulants.
few days later, during an echocardiography, I hear the doctor say: "my heart is floating." Unfortunately
know what it is: a pericardial effusion, life-threatening situation.
The heart surgeon attempts to insert a needle into the pericardial space from the outside to perform a pericardiocentesis, but the presence of the scarring process had the first surgery on the chest prevents this maneuver, I must then return to the operating room.
After the operation, which takes place the same evening, I wake up again intubated.
spend another two weeks, during which I am stub, slowly resume eating, I was suspended parenteral nutrition (nutrition intravenously), and one day I asked if I'm happy to get out of intensive care: I ask because, to be transferred? "and I will answer yes: I am finally moved in subintensiva therapy, then in the hospital: I left almost did not believe that I would return to normal life.
four months have passed since the day of my hospitalization, two of which were spent in intensive care. When I leave the hospital
observe with wonder the cars, buildings, people.
The neurological symptoms of myasthenia have disappeared, he began his recovery, I love walking in the afternoons per le vie del centro e guardarmi intorno.
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