I suffered from an aggressive form of myasthenia gravis, an autoimmune condition, which left me unable to speak, eat or drink. I had almost four months in Intensive Care at the Royal Infirmary of Edinburgh, followed by almost two months in the adjacent Department of Clinical Neurosciences, with visits to the Apheresis Unit for plasma exchange sessions.
Key to my recovery were the plasma-exchange sessions and the work of the Speech and Language Therapy (SLT) team. Both teams were very professional, and gave me hope when hope seemed impossible.
Improvement? The SLT gave me two treatments which involved a small camera being inserted down my nose into my throat. The second session seemed needlessly painful. No pain killer was involved. I was in tears. Next we tried a series of x-rays of my attempts to swallow. This was painless, and achieved much greater outcome than the camera.
Their work revealed muscle weakness in certain areas, and I was given exercises to strengthen those muscles. Soon I was beginning to swallow custard and other soft foods, and slowly small amounts of water.
The combination of these exercises and the work of the Apheresis unit transformed my health in a relatively short time. The Physio team helped get me walking, first with a zimmer, then a walking stick, and finally independently.
The Neuro team meanwhile were giving me a steroid and other drugs to counter its worst effects. The entire team of nurses, doctors and support staff in the Neuro ward were magnificent, and helped get me in a more positive frame of mind. I've now left the hospital after five and a half months of care, but visit once a week for a plasma-exchange session. I also meet my Consultant once a month, likewise my psychiatrist, both of whom really helped me through tough times.
I have not discussed my four months in Intensive Care, as the experience was too horrendous for me to reflect upon at this stage in my recovery.
"Best care during my worst time"
About: Neurosciences (DCN) / Outpatients Department - OPD7 Neurosciences (DCN) Outpatients Department - OPD7 EH4 2XU Royal Infirmary of Edinburgh at Little France / Clinical haematology Royal Infirmary of Edinburgh at Little France Clinical haematology EH16 4SA Royal Infirmary of Edinburgh at Little France / High Dependency Unit & Intensive Care Unit Royal Infirmary of Edinburgh at Little France High Dependency Unit & Intensive Care Unit EH16 4SA Royal Infirmary of Edinburgh at Little France / Neurosciences (DCN) Royal Infirmary of Edinburgh at Little France Neurosciences (DCN) EH4 2XU Royal Infirmary of Edinburgh at Little France / Speech and Language Therapy Royal Infirmary of Edinburgh at Little France Speech and Language Therapy Edinburgh EH16 4SA
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