5 курс / Пульмонология и фтизиатрия / Clinical_Tuberculosis_Friedman_Lloyd_N_,_Dedicoat

Intro

This is the story of one overprotective mother and one lazy teenager. That “overprotective” mother turned out to be right and that “lazy teenager” went on to study English Literature and Language at Oxford University. Both lived with undiagnosed TB for over 18 years.

1997

In 1997, I (Kate) was 5 years old and had always been a happy and healthy child. My mum (Lorraine) was diagnosed with celiac disease when she was 20 years old but this was now 17 years on and it was very much under control. My grandparents, on my father’s side, owned dairy farms in Ireland and it was on a visit to County Kerry in the summer of 1997 that our lives changed. We were given a jug of warm, creamy milk to put on our cornflakes. Looking back now, it seems so obvious but back then it was nothing out of the ordinary.

Lorraine

Less than two weeks after returning from this trip to Ireland, I started to rapidly lose weight. Within a week I had lost over half a stone. At this point I had no other symptom. The following week I developed night sweats and vividly remember lying in bed, watching beads of sweat spring from nowhere and roll down my legs. By now, I also had a persistent dry, non-productive cough, accompanied by an overwhelming feeling of weakness. During this period I had seen my GP three times but there was nothing remarkable to guide him to a diagnosis. Later that week, I was admitted to the hospital, having lost over a stone of weight in less than two weeks and was subsequently diagnosed with “pneumonia.” I was told that the “pneumonia” hadn’t presented itself in the usual way—no temperature, no chesty cough, no chest pain or breathing difficulties, and only a faint mark on the chest x-ray. The consultants asked whether I had been outside of Europe but no one asked about Ireland. After a week of IVs I was discharged. However, on returning home I was still too weak to walk and would have to crawl on my hands and knees to make it up the stairs. The weakness remained overwhelming and even trying to lift the kettle to make a drink caused me to retch. A physio was sent to the house to try to help me to get back on my feet. It took weeks for me to master even climbing up the stairs which eventually led the medics to believe this weakness must be in some way psychosomatic. Three months later I still had no appetite and had not put on any weight.

I was later given a pneumonia vaccine but within just a few weeks, I was told the pneumonia had returned. This characterized the next few years: recurrent chest infections, antibiotics, and IVs.

I underwent extensive tests, but no one could identify the cause. In the end I was told that it must be because I was a celiac; I “obviously had a weak immune system.”

Kate

Aged 10, I came home from school and collapsed in the hallway with what I can only describe as extreme weakness, a feeling I came to recognize as the years progressed. Prior to this, I had been an active and energetic child. That evening, the shivers began and then the sickness. At this point, I had no cough and no temperature. Yet, my “overprotective” mother recognized the sensation of being too exhausted and feeling too weak to even speak. “I think my daughter has pneumonia,” she said to the local GP’s surgery, to which they told her to calm down, “Stop overreacting, Mrs. Tuohy.” Later that day, I was admitted to the hospital and diagnosed with pneumonia.

The following year my appendix burst. Meanwhile, I continued to have recurrent chest infections which were treated with oral antibiotics. A chest infection meant losing weight, extreme weakness, feeling too unwell to speak or move, no appetite, and feeling sick. Our infections were 100% debilitating.

I was aged 14 when the situation worsened. I lost a stone in a month, next my appetite went (and never returned), then the sweats and shivers began, and only when I began to feel really ill did the dry cough emerge. This was a pattern which repeated itself over the next 8 years; that dry cough used to send us into panic mode. I was constantly being diagnosed with “pneumonia” and the endless tests began. I was referred to numerous hospitals but every test came back negative. Then my tummy began to grow, a bit of bloating to start with; “Stop fussing and do some exercise,” I was told again and again. The reality, without laxatives I never went to the toilet and, by the time I was 16, I was regularly being asked by doctors whether I was, in fact, pregnant.

My body was slim but my tummy was rock solid and distended. They ruled out celiac disease with a biopsy and then I underwent x-rays, ultrasounds, barium meals, and MRIs. The consultants eventually concluded that they had never seen anything like it and the only option was a laparoscopy.

In the middle of the laparoscopy, the surgeon came out to my parents and informed them that he was going to have to resect part of my terminal ileum which, for no apparent reason, was nonfunctioning and blocked with undigested food. The surrounding intestine also didn’t look normal. The surgeon had never come across this before. Over four hours later, I emerged from the operation. For a few weeks, my gastro symptoms improved, but slowly my lower abdomen began to grow and was doughy in texture, I was back to taking laxatives, on painkillers for spasms, and occasionally admitted with violent sickness and given IV pain relief. This was my GCSE year and, by this point, there had been large