Intended for healthcare professionals

Practice A Patient’s Journey

Living with lymphangioleiomyomatosis

BMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c848 (Published 12 March 2010) Cite this as: BMJ 2010;340:c848
  1. Havi Carel, senior lecturer in philosophy1,
  2. Simon Johnson, reader in respiratory medicine2,
  3. Liz Gamble, consultant in respiratory and acute medicine 3
  1. 1Faculty of Social Science and Humanities, University of the West of England, Bristol
  2. 2Division of Therapeutics and Molecular Medicine, University of Nottingham, Queens Medical Centre, Nottingham
  3. 3Department of Respiratory Medicine, Bristol Royal Infirmary, Bristol
  1. Correspondence to: H Carel havi.Carel{at}uwe.ac.uk
  • Accepted 5 January 2010

Since being diagnosed with lymphangioleiomyomatosis, Havi Carel has learnt much about the adaptability of the body and quality of life issues for patients with chronic illnesses

I need to walk my dog. She is delighted to be heading out. She is a runner. I, on the other hand, have a cystic lung disease that has damaged my lungs. Running is out of the question. At best, I can walk at a measured, matronly pace. I can only dream about running.

It has been four years since my diagnosis with lymphangioleiomyomatosis (LAM), a rare lung disease that affects mostly women, during which I have experienced a dramatic decline in my lung function, followed by a transplant assessment. The transplant team said I was too well to go on the list but have kept an eye on me since. I then asked—begged—to be put on an experimental drug, sirolimus, which stabilised my condition. I went from being a healthy, fit, 35 year old woman with a wonderful husband and a great job as a philosophy lecturer, to being ill and scared. My diagnosis felt like everything was being taken away from me—suddenly, unfairly, and with no prospect of compensation.

For quite a while I had been feeling breathless. I could feel my lung capacity falling. Eventually, I went to my GP. She shrieked in horror when she saw my spirometry results. “I’ve never seen anything like this. I have no idea what this could be.” I was alarmed and asked my father, a director of a medical screening centre, to arrange a computed tomography (CT) scan for me. I had the scan in the morning, and returned to collect the results in the afternoon.

The radiologist clearly did not want to break the bad news to me in person. He said, “Sit …

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