Cara Taylor is a Scottish born school teacher and storyteller living in Leiden Holland. She was an early contributor to kerinsnaumov.com and helped us getting started.

Stenosis Story

Around 8 years ago, I gradually began to notice I was getting breathless by the time I got home. I was not a particularly sporty person and at first I put this down to being unfit. Eventually though, I was persuaded to get it checked out.  After a visit to the GP, I was diagnosed with mild asthma and given two different inhalers. At the time this seemed a little odd, as I had never had any kind of "attack" as such, and my symptoms didn't quite seem to match up with those my asthmatic sister described.

6 years later, I finally went to my Doctor again, who referred me to an asthma clinic. It was there that I had my first ever lung function test. At 30, I was told I had the lungs of a 60 year old, but not to worry, because most people they saw at the clinic had an average 'lung age' of 80.The clinic scheduled me for a follow up check in October. In the mean time, I discovered I was pregnant with my first child, so we agreed to postpone further testing until after the birth.

As my pregnancy progressed I began to get more and more short of breath. I knew something wasn't right. I  was placed on another brand of inhalers, which were supposed to be safer during pregnancy. After another few weeks of coughing, loud wheezing and breathlessness I went back to my doctor. He didn't want to increase my inhaler dose without further investigation, so I was referred to a pulmonary doctor at the local hospital.

The hospital couldn't do an X-ray due to my pregnancy but after a consultation with the lung specialist my inhaler dose was instantly trebled. The new dose of inhaler gave me little respite. I was being regularly monitored by the specialist, but as my belly grew bigger, my coughing, wheezing and breathing got steadily worse. As I walked to work in the mornings during the dark winter months, women in front of me would often hear me behind them and turn round expecting to see a male doing the 'heavy breathing'. The look of surprise when they came face to face with a short Scottish woman still makes me laugh.

I struggled through till the end of my pregnancy, with friends telling me that my constant wheezing, breathlessness and extreme tiredness were perfectly normal. After all, I was heavily pregnant. After giving birth, I still felt incredibly short of breath, but life with a newborn kicked in and the adjustment was so exhausting I decided to wait until my follow up appointment with the specialist.

I saw the lung specialist again in July and when he listened to my throat he immediately heard the loud, Darth Vader-like stridor I had been experiencing. He was concerned and wanted to do a bronchoscopy (where they put a tube down to view the airway and lungs), and explained the procedure to me in detail. I asked what I should do if there were any problems. "Don't worry, this is a routine procedure, we do this all the time, but if you have any problems, just raise your hand." After being given an unpleasant local anaesthetic that tastes not unlike rotten banana, the bronchoscope was put down through my mouth. Seconds later, I was completely unable to breathe. I tried not to panic as I raised my hand to signal there was a problem, all the time seeing the numbers plummeting on the oxygen metre next to me. The specialist realised this also, and instantly removed the bronchoscope. When I saw my airway on the screen, I was horrified. The specialist explained that I had been breathing through a hole the size of a drinking straw. My trachea was so narrow that it had been completely blocked by the bronchoscope. In the moments that followed, it seemed like I was bombarded by a thousand questions as I sat there in a teary, breathless haze. Had I ever been intubated? Was I ever in an accident? Had I had any surgery recently? I explained I had previously had surgery as a child at the same hospital, but was never intubated. I didn't fully understand what was happening, but the specialist said he would have to refer me to a senior specialist at a neighbouring hospital who had just left for a three week holiday. I was given a nebuliser to stabilise my breathing before being released and told that they would get in touch with the lung department at the other hospital.

In the weeks that followed, my breathing grew increasingly worse, to the point where even walking across a room would leave me breathless.

I finally got an appointment with the senior pulmonary doctor. He confirmed the diagnosis. Subglottic stenosis- a relatively rare condition where your upper airway gradually grows inwards or scars over until you can no longer breathe properly. He explained I would need surgery to fix the problem, and sooner rather than later. The plan was to put a rigid bronchoscope down under general anaesthesia, into which he would put a specialised laser. The laser would then be used to carve away the excess tissue and open my airway. As a precaution, I would be kept in ICU over night, in case of swelling. There was an opening for surgery the following Monday, and after a visit to the pre operative screening post to have bloods taken, I prepared myself to go into hospital after the weekend.

After the operation, I woke to find several people standing beside my bed. They informed me that while the surgery had gone to plan, there had been some complications and one of my vocal cords had been damaged. I was told not to speak, and put on complete voice rest. Later, I would learn to discover that my trachea had been too narrow to fit the rigid bronchoscope normally used to guide the instruments. The specialist had been forced to complete the procedure using a flexible laser, which had accidentally caused the damage.

Still drowsy from the anaesthetic, the news took a while to sink in. When it finally did, I was devastated. As a storyteller and primary teacher, everything I did involved my voice. I regularly told stories without a microphone to audiences of over 100, I had to teach classes for three days a week- and how on earth was I going to be able to communicate with my son? I had so many questions, but felt powerless to ask them without my voice. I was still drowsy, struggling to breathe and my throat hurt considerably. I began to wonder whether the surgery had been worth it. I was exhausted,  but there were so many constant alarms going off and people rushing to and from other beds that sleep was next to impossible.

The following morning, I was moved back to the ward and I was allowed to eat for the first time since the operation. Not being able to speak was hard going, but I managed to get by with a pen and paper. I was put on a course of prednisone and antibiotics. Later that day,  the surgeon came to see how I was doing and I was released from hospital, still with complete voice rest.

By Thursday my breathing was still terrible, and my throat still felt like it was on fire. I was constantly coughing and struggling for air. The hospital phoned my husband and confirmed the follow up appointment for 9am the following morning. Throughout the day my breathing got steadily worse, but the appointment was only a few hours away, so I decided to wait it out. That evening, my neighbour, who was also a lung specialist in the same hospital, came round to see me. He took one look at me and asked me if I was having trouble breathing. I nodded yes. He said I needed to go into hospital that night. I was still on complete voice rest, so it was a relief that he knew the situation and I didn't need to explain things to him. No, it couldn't wait till the appointment in the morning, I had to leave there and then. He phoned ahead to arrange a bed for me.

The following morning I had the bronchoscopy, which I have to say was one of the worst experiences of my life. I have particularly narrow nasal passages, and the specialist had to fit a larger bronchoscope through my nose in order to get a close look at the loose tissue and attempt to remove it. My airway was still extremely swollen and despite the large amount of local anaesthetic it was still incredibly uncomfortable. After what seemed like an eternity of coughing, gagging, spluttering and extreme shortness of breath I finally signalled that enough was enough- was there no other way to do this?

The doctor explained to me that my airway was still raw and swollen and that there was a large amount of loose tissue, which in combination with my damaged vocal cord was causing my difficulties. He had been trying to remove a loose flap of tissue in the hope it would help my breathing, but he had not been successful.

After several hours, I was surprised to be called down to the ear nose and throat department. I was introduced to the senior Otolaryngologist. I was a bit wary when they wanted to use a camera to do a scope through my nose, but I soon realised that these type of scopes are amazingly pleasant compared to the bronchoscopies done by the lung department. After he had a good look, we watched the video back together, pausing at different points. They were concerned about the swelling, about my damaged vocal cord and about a large flap of loose tissue which was causing a lot of the difficulties. They discussed the options. The plan was to do a balloon dilation. He explained this was where they would inflate a balloon inside your trachea, to open the airway.  He asked me several questions, and wondered why I didn't answer. I tried to explain my voice rest. I was given permission to talk again, but to take things slowly at first and reduce the amount I used my voice. What a relief to be able to speak! All being well, they planned to release me on the Monday and have me back in for a balloon dilation in two or three weeks, once the swelling had subsided. One of the ENT doctors at the meeting was on duty that weekend, and she agreed to do an extra scope the following day as a precaution.

The following morning,I was still really struggling for air most of the time. I realised how bad things were when I went for my scope. The official line in the hospital is that all patients should be transported by bed for appointments, but I thought this was ridiculous, and walked with the ENT doctor. I was barely able to walk the 50m from the lift to the ENT department without collapsing. After the scope, there was more bad news. The large flap of tissue that had been loose the previous day, had now decided to reattach itself to the walls of my swollen airway in a rather dangerous way. For now, it was still loosely attached there, but there was a real danger that if left there permanently it would severely block my airway, possibly even completely.

On Sunday evening, the ENT doctor on duty came to see me and looked at me with his scope. He said I would almost certainly be called for surgery with the Otolaryngologist the following day, most likely for a balloon dilation. By this point, my body had almost given up.  I felt completely drained from the constant coughing and struggling for air. That night, my breathing got so bad, there were several points I was scared I wouldn't make it.

The next morning, I was ready to face the surgery and whatever else may happen. Things couldn't be any worse than they were, and besides, I still had a half finished crossword to complete. I wasn't expecting to see the surgeon before he performed the operation, so I was surprised when they kept me awake so he could to speak to me beforehand . He carefully explained to me in layman's terms what they would be doing. The basic plan was to remove the loose tissue and then do a balloon dilation.

As I awoke after the operation, I felt better than I had in years. It was amazing- I could breathe properly again! In the end they hadn't needed to do a dilation, just clean up and remove the loose tissue. I was given a humidifier machine next to my bed as well as saline nebulisers to keep my airway moist. A few hours later, the surgeon came to visit. He was pleased to see me sitting up in bed and even made jokes about the fact that I was eating!

Two days later, I was given another scope to check the surgery before I was released. My airway looked clear again, but my vocal cord was still incredibly swollen.

Since my surgery, my care has been transferred primarily to the ENT department at the hospital, unless I need to have any further advice or treatment from the lung department. There is still a chunk missing from my damaged vocal cord, and also a large lump of granulated tissue where the laser came into contact with it. My voice is slowly getting back to normal, but I doubt it will ever really be the same again. Unfortunately, the stenosis is also returning, and my diagnosis has now thought to be Idiopathic, meaning it has no known cause. This also means it will likely keep returning. As it got dramatically worse during my pregnancy, they are fairly certain it will do the same again if I decide to have more children. Although my airway is still relatively open, living with this condition means I am often breathless and tired. I still need to go for regular check ups at the hospital, and I have had another two procedures since the initial operations. When my breathing gets bad enough again they will plan in the next balloon dilation.

It has been a difficult time, but the staff at the LUMC in Leiden have been amazing. My surgeon and his team in the ENT department are always there whenever I need them, giving up their time and squeezing me in for appointments despite their busy schedules. I am extremely grateful for the excellent care and advice they continue to give me, and I can't thank them enough for all they have done for me.