Five years ago, the world of Nancy Lugano was turned upside down. When you meet her, you cannot tell that she has undergone seven surgeries, lost her vocal cords, was told she will never speak again, had her teeth replaced, suffered severe depression and much more. Except for her low voice, Nancy is charming and warm, chatty and always ready to interact with people and learn more.
But five years ago, a dark cloud had formed over her. She wouldn’t call the cloud dark now but that is how it felt back then. She questioned ‘why her’ and felt like a statistical minority, always in the 1% that failed while 99% of the people succeeded.
Having met her and served together in church, I had gotten to hear snippets of her story. But the layers of her account deserved an uninterrupted sitting and so we did that.
It all began on the final night of a work training she attended at Maanzoni Lodge in Machakos County. On that third and final day of the training, she was her usual self, everything seemed okay. She chatted with colleagues as they had their last supper. They were to leave the following day in the morning.
She then went to her room, refreshed, called a few friends and her mum just to catch up before she retired for the night. She switched off the TV and tried to get some sleep, but she couldn’t sleep as she kept tossing from one side to the other. She felt an urge to go to the washroom and was able to sleep after that.
But it wasn’t to be a smooth night.
She woke up at about 2am with an urge to go to the washroom but she also felt something else. Her face was heavy with numbness on one side. She wondered what it was.
“I thought that maybe I had not slept in the right position, but I realized there were some changes on my face when I looked at the mirror, my forehead had a dent” she says.
Nancy called her son Allan who is a Medical Doctor and his initial thought was that it could be an allergic reaction. She also called her husband. Allan advised her to reach out to the hotel reception for assistance.
Nancy called two of her colleagues, but they didn’t answer. She tried the hotel reception number, but it wasn’t working. The reception was a distance from the rooms as they were in separate buildings. At the encouragement of her husband (Mr. Lugano) and son, she gathered courage and walked to the reception which was quite a distance.
Her team leader was called, and he came with two other gentlemen.
“At that time, I felt okay apart from the heavy face” Nancy says.
The three gentlemen took her to a hospital in Machakos.
At the hospital in Machakos she was given drugs to thin her blood (in case it was a stroke) and others to help her sleep so that the next day she could go to Nairobi and see her doctor.
“As the doctor walked me out of his office, I saw myself on the mirror at a sink and I saw the dent had moved down to the chin.”
“What is this?” she asked the doctor as she held his hand tightly.
The doctor assured her that it will be ok.
After briefing her son, she slept.
She woke up around 5am and went to the washroom. What she saw in the mirror shook her.
“My face was swollen, lips were hanging, saliva was oozing down” Nancy remembers. She pulled a seat close to the mirror and examined herself.
“What I feared the most has happened to me” she told Allan on the phone.
“What did you fear the most?” I ask.
She answered by recalling a friend who had a stroke and her face was deformed. She was convinced she was having a stroke and she officially panicked.
Nancy’s husband reached out to his friend (Mr. Maswache) who was in the same training and asked him to check on his wife. At the same time, her son was driving to Maanzoni in the company of her aunt, Claire. When Mr. Maswache arrived at Nancy’s room and saw her, he couldn’t speak because of shock. He and another colleague helped Nancy to pack as they waited for Allan.
By 6.30am Allan had arrived. He noticed that her mother’s face was swollen but he didn’t think it was a stroke. He drove like crazy back to Nairobi as he made calls to Nairobi hospital for them to get ready for his mom.
She was taken in and many tests were run, attended by three doctors. They checked her for food poisoning, allergic reactions, blood levels and even tested her eyes to check if it was a stroke. Her skin had turned pale at the time. They decided to admit her for further investigations.
Scans and x-rays followed. They realised that her thyroid gland was enlarged. The ENT doctor was summoned.
“He came in and said the thyroid gland was swollen, had some cracks and needed to be removed” Nancy recalls.
At the same time, Nancy’s pressure was going up which was a risk for the surgery. Her husband had arrived, and a decision needed to be made for the surgery.
Mr. Lugano was reluctant on the surgery questioning how the swelling was related to thyroid glands. He also wondered how Nancy would manage the surgery with the pressure. The cardiologist assured that he will administer some steroids to help during the surgery.
Nancy decided to go ahead with the surgery, bearing in mind that a year before she had been told of a cyst in her thyroid that would eventually require surgical intervention.
At the time Nancy was speaking normally and her face had returned almost to normalcy.
Preparations began, nil by mouth at night as she was to go to theatre the next morning. The anaesthetist and four theatre attendants came and briefed her in the morning.
She was still wondering where her people were when Allan appeared just before she was taken to theatre. Mr. Lugano didn’t know the scheduled time since it was an emergency.
10am to 6pm, that was her date with the knife.
She could feel the pain in her neck when she was back in the ward. But she could speak.
The larger family had come to visit her. After they left, she fell into much-needed deep sleep.
“All of a sudden I heard someone tapping me and calling loudly ‘Nancy, Nancy!’” she recalls.
She opened her eyes and two nurses were around her.
“Nancy you are not breathing well, we can hear you from the corridors” they reported with much concern. They thought Nancy’s sleeping position was wrong and so they helped her stretch out and elevate her neck.
“This could be a stridor (a high-pitched, wheezing sound caused by disrupted airflow)” one nurse said in the background, adding that they should call the doctor. Nancy later learnt that the doctor was called that night, and he told the nurses it wasn’t a stridor and he would come in the morning to check her.
“If it was a stridor, I could have heard you from the corridors as I walked in. You are looking okay” said the doctor when he examined Nancy in the morning.
Three days later Nancy was discharged, with a check-up due in a week.
In the house, the pain was excessive as other issues arose. She could not climb the stairs, another time she was short of breath in the bathroom and she also choked on fluids. She was concerned but she thought it would pass as she healed.
One time her second born son, Brolin found her on the floor after coming back from the shop which scared him since he did not know much about the mum’s condition.
Catherine, one of her long-time friends moved in with them to help her. As she took Nancy for a walk on one of the evenings, something frightening happened.
“As we walked, I tried to breathe in but could not breathe out, which was very scary.”
“Have you ever imagined that?” she asks me, and I could only shake my head wondering what happened next.
Catherine realized something was wrong. She held Nancy for a while as she regained her breathing and then they went back to the house.
Nancy was getting alarmed, the small mishaps were persisting, and she couldn’t tell what was happening. Something we take for granted like breathing in and out was becoming a problem!
She could be heard breathing from downstairs.
During her next appointment she heard the word ‘stridor’ mentioned again. This time by the doctor’s receptionist who could hear her coming because she heard her breathing and even opened the door before they knocked.
“She took my hand and led me to a seat, put her hand on my back and told me not to speak. We were quiet for almost 30 minutes as she rubbed my back.”
She then called the doctor who was in the wards.
“This lady has a stridor” she informed him. This is the second time Nancy heard that word.
The doctor came after a while, called in one patient ahead of Nancy and then saw her next. Nancy had rested and so the breathing had normalized. The doctor insisted that she was well, and her symptoms were part of the healing process.
You know when you are unwell and you feel like your condition is an emergency and then the doctor dismisses it as nothing much, that’s how Nancy felt.
Nancy went back home, and her health deteriorated. Depression started knocking at her door.
“One of those days I couldn’t sleep at all, I was restless, and I had to support my head with several pillows. At 3 am I tapped my husband.”
“I am not well” she told him.
“Can I take you to the hospital?” he asked.
Nancy answered in the affirmative.
They went back to Nairobi hospital and met Allan there. A machine was brought to test the oxygen levels and the doctor looked at her. She inhaled and couldn’t exhale.
“You just go in a moment of trance; your mouth and eyes are open. You feel like you want to hold somebody, but you can’t” she explains to me how that moment feels like.
The doctor perceived what was going on and he pushed Allan out of the curtain.
“Somehow, I managed to hold on to my husband, knowing in my heart that if I had to die, am with him. I strongly felt in my heart that it was time.”
The doctor went behind the curtain and spoke to her family (Mr Lugano, Allan and Adrian). Nancy could hear him well.
“This is a stridor” he said.
The cardiologist was informed of the new development as she was put on a nebulizer all night. She struggled to breathe until morning when the cardiologist came with a team of doctors.
They found her sitting on the floor because all other positions weren’t good enough for her to breathe.
At that time Nancy could still speak normally.
“I am sorry mum, but we have to take you back to theatre” the bomb was dropped by the cardiologist to Nancy’s dismay. The doctor explained that the breathing issue could only be corrected surgically.
Allan explains that her mum’s vocal cords were paralysed after the first surgery, they were not moving. That is what caused the breathing problems and the second surgery was necessary to clear the airway.
“I don’t think the first surgery was necessary at that time, this is after consultation with other doctors” Allan says.
Preparations began in earnest for the emergency surgery.
I panicked! My heartbeat was so fast, and I thought to myself that I will die in the theatre.”
She somehow composed herself and prayed out, “God, give me peace.” She experienced immediate peace.
Amid pants for breath, she signed the consent form.
Three weeks after the initial surgery, Nancy was wheeled back into theatre. Her son behind the team of doctors following the trolley. His eyes fixed at the mother. It’s a picture forever etched in Nancy’s subconscious. “What could he be processing in his head” Nancy wondered as she entered the theatre.
Later in the evening she came out of theatre and another picture was waiting for her, that of family and friends lined on both sides of the corridor, wiping tears and shaking their heads as she was wheeled back to the ward.
“Kwani am dead” Nancy remembers her thoughts as she laughs. Clearly her sense of humour wasn’t bruised by the experience.
Nancy noticed many tubes connected to her as she got back to the ward.
And that is the point when Nancy realized that she couldn’t speak. She tried to make sounds, but nothing came out. At the same time, she was being gestured not to talk. The friends and family prayed and left her to rest.
The doctor came the following day and told her that he is happy she can breathe.
“But I am not talking” she asked with the whispers she could gather.
“We will address that later” the doctor answered.
I ask Nancy if she thinks they knew what had happened (that she couldn’t speak) and she nods in the affirmative.
Her last-born son Addy visited her after the surgery and was shocked at the sight of the mum who looked pale and ghostly. That’s when it hit him that it was serious. He took a photo to remind them of that moment.
With three scars (two from first surgery and one from the second), her breathing back to normal and an assurance from the doctors that she will be okay, she was discharged. She wasn’t told, though, that she would choke.
At home, she would choke and loose her breath momentarily, like someone had hit her.
It was bound to happen; she would later learn. And someone ought to have prepared her psychologically, which prompts her to tell me about the importance of counsellors in hospitals.
“The counsellors should work with the doctors, so that they can support patients to deal with fear, panic, anxiety and to help them cope.”
The second time Nancy choked; they went back to hospital for review.
The doctor explained using a diagram what had been done during the first and second operation, why she would experience chocking and why her voice wasn’t back yet. It was temporary, he assured, the nerves had been over-strained but with time she would heal and speak normally again.
After three months she went for another review. Her voice was still absent. Her nerves were still asleep.
Six months later there wasn’t much progress. She was back to work on flexible working hours and was transferred to the back office.
“How was the reaction the first time you went back to the office?” I ask.
“I was scared and worried about my image, I didn’t like it when people looked at me” she answers, appreciating the fact that she had just been moved to a branch nearer home and with fewer people.
The doctor gave her a new target of eighteen months for her voice to come back.
“Eighteen months!” I exclaim, shaking my head as Nancy casually says she interpreted the message as ‘stretching her faith.’
After the third appointment she would begin to hear messages being passed around in hushed tones. “And even if you don’t talk, thank God you are breathing” the doctor would say.
I ask Nancy what she understood about the condition at that point. Did she know other people going through the same thing?
“Visitors and friends who had undergone thyroidectomy told me they were able to speak after three months and utmost six months, none above one year. So, I had hope.” she answers.
After the next appointment she developed an infection in the tract system, affecting her digestive system and other parts.
The urologist she saw gave her medication which didn’t work and later asked to take her to the theatre to look at how the system was behaving. He explained to Nancy that they would use a camera to examine her and it wouldn’t be anything major.
“Ok, fine” she consented.
In the morning of the procedure the nurse came and asked Nancy to remove her nail polish since she would be put under anaesthesia.
“I was confused, I didn’t understand what was going on because I had been told that it was just a check-up” she says.
The anaesthetist came and off to theatre they went.
She was in theatre for four hours and when she came back, she didn’t expect what she saw.
“What again?” exclaimed one of her sisters who had come to visit her when she saw the tubes with blood.
“What is it?” Nancy asked, unaware of the bloody bag below the bed and many tubes connected to her.
“It is well” the sister assured her, trying not to scare Nancy.
The doctor came the following day and explained what he had done.
“You know during the examination, we realized that your urinary system from the bladder all the way down had some constrictions and we just decided to clear that”
“So, what have you done?” Nancy asked.
“We have given you some stitches” he answered.
“Four stitches?” she probed with the number that came to her head.
“No, you have about twelve stitches” he confirmed.
It was difficult for Nancy to take that in as the doctor insisted that it had to be done.
At this point of the interview it was getting quieter in the cafeteria where we were. There were more empty chairs and Nancy’s story was beginning to get to me. I began to ask myself how much one person can bear. What is the threshold of endurance?
Nancy stayed in the ward for another seven painful days. Pain she wasn’t prepared for. Relieving herself was like pouring acid on a fresh wound. At home, her last-born son Addy would ask to help, as he saw her mother in tears and in pain unimaginable but there was nothing he could do. She could not control the urine as such which made things worse.
Mr Lugano had to take her back to hospital and the doctor prescribed drugs to neutralize the acidity in the urine.
But after three months the infection reoccurred in the tract system.
They went back to the same doctor, who expressed shock at the reoccurrence and asked to look at her, in the theatre. He went ahead and repeated the same procedure he had done three months earlier. He justified it by arguing that the body was reacting to scars which had formed inside, creating another blockage.
So, he repeated the procedure, this time without stitches.
I cringed as Nancy narrated her story with sublime calmness that I could not understand, often smiling. She confirmed to me that it was her fifth surgery within a year.
Because of the urinary infection, other scans were run on her liver and kidneys as a precaution.
The scan results came back, and Nancy was informed that she had a cyst in the liver.
I paused the interview and went to get us tea. Things were escalating too quickly for me. The break was necessary.
You can find Part II of Nancy’s story HERE