In September 2004, at the age of 65, I did what I had dreamed of doing since I was 14years old and read of Edmund Hilary’s’ first ascent of Mount Everest.
I did a 14day trek from Kathmandu to Everest Base camp.
The trek was arduous and although I was very fit, I returned home to the NSW mid North Coast feeling very tired and having lost a lot of weight.
After a weeks rest. I left for Perth in WA to visit my son and his family and on the second day there, I started having back pain, difficulty in breathing and loss of balance. The next day it was much worse and that night I was struggling for breath. My son called an ambulance and I was taken to Joondalup Hospital. I spent all night there with severe back pain, but in the morning the doctor told me to go home and see my GP for a diagnosis. I told him that my GP was in NSW ! but I was discharged.
My son had only just moved to the area, so had not yet sourced a local GP, so I checked the Yellow pages and found one fairly close by.
I was in luck ! He heard my story and told me to get myself to the Emergency Dept of the Sir Charles Gairdner Hospital in Perth as fast as I could. He said he did not want to alarm me but thought I needed urgent assistance !
My son drove me there and within minutes I was under the care of a group of highly professional doctors. They seemed to suspect immediately that I had a severe neurological condition and they started a series of tests to isolate the problem. I had a lumbar puncture followed by a MRI scan and was admitted to ward G66 with very severe back pain and loss of feelings in my feet.
I was under the care of Dr. Blacker who told me that he suspected that I had GBS, and explained what this meant, and wanted to do a nerve conduction test to help confirm the diagnosis. However, I was in so much pain that I could not handle that, and was started on infusions of Intragram.
By this time, my wife had been notified and she flew in to be with me.
She was pretty shocked at what she saw and when she was told that I was now in a critical condition and there was a chance that I may not make it !
The paralysis had spread rapidly and I knew if it got to my lungs then I would be put on life support.
The next few days were lost to me as I was heavily sedated, but the Intragram treatment seemed to work as the paralysis stopped just short of my lungs and then started to retreat.
My wife stayed with me throughout this time and slept in a hospital owned unit close by.
During this time, my kidneys started to fail and I had to have a catheter and heavy doses of drugs to ease the pain in my back.
After about two weeks I started to improve and tried to stand up for the first time. I had no strength in my legs and my feet were both numb, so I fell on my face on the floor !
Both Dr. Blacker and the nurses were fantastic and I knew then that I was very lucky to be in their care.
It was now early November, and Dr. Blacker told me that it was unlikely that I would be home for Christmas and that I would probably have to leave in a wheel chair !
I could not face this prospect !
How can you go from a trek to Mt. Everest to a wheel chair ?
Thinking back, maybe he told me this to motivate me ! If so, it certainly worked and with the help of the physiotherapist and a walking frame, I got up on my feet and with my wife supporting me, I started to walk again.
Up and down the corridors for a couple of days and nights, then I could stand unaided – then I could walk unaided – then I could climb the stairs !
And so on November 22, 2004 I walked out of the hospital, into a taxi and a flight back to Sydney and on to Coffs Harbour.
And so I was back home well before Christmas, but very, very weak and a thin as a skeleton.
My recovery from then, was slow, but steady. I walked a little more each day and then in mid March, I played my first few holes of golf.
I was told that I should make a full recovery, but my toes were still numb and this of course affected my balance.
Over the next 2 years, my strength continued to improve but it seems that the Myelin sheath in my feet had been irrepairably destroyed and I was told that my feet would never return to normal. However, I had learnt to live with the problem and was then walking and playing 18 holes of golf off a handicap of 20. It could have been so much worse.
My relapse started almost exactly 2 years after leaving hospital.
It was a gradual relapse – a loss of stamina, pain in my toes when walking and loss of balance. My wife said that I walked like a drunken sailor!
As there is no Neurologist in Coffs Harbour, we went to the Gold Coast for a consultation and Nerve Conduction test. The test confirmed that I had regressed and the Doctor thought that I now have CIDP. She wanted me to have another lumber puncture and then 5 days treatment of Intragram. This was concluded last week and I am now anxiously awaiting for some signs of improvement. Today is Anzac Day 2007.
Whatever the future holds for me, I know that the good things that happened are worth remembering.
The Doctors and staff at Sir Charles Gairdner Hospital were fantastic and their fast intervention saved me from a much more serious fate.
The many dedicated blood donors, whose contribution provided the life saving Intragram, without which I would probably not be writing this now.
The unswerving love and support of my wife, who sat by my side for every day of my hospitalisation and who nursed me back to health once I was able to return home.
I believe that all illnesses are as much of a mental challenge as a medical one and I know that if the CIDP diagnosis is confirmed it will be just one step along the road to recovery.