The year 2O1O commenced with changes in my life. My husband of 63 years Jack, aged 87 years, had been admitted into Toronto Nursing Home in the final stages of emphysema. I had had bi-lateral knee replacements in October 09. The operation had been successful and I was just getting back into my regular walking.
Towards the end of February 2OIO it became apparent that Jack was not going to last much longer so my visits to the Nursing Home became more frequent, often with my daughter Venessa.
On the night of 21st February I was stricken with acute nerve pain in my lower back which radiated through my buttocks and down the back of my legs. The pain commenced about 10pm after I had gone to bed. I walked the floor for hours and found that by about 5am the pain had subsided and I was able to get a little more sleep.
My husband died of emphysema on 26th February, with the funeral to be held on 4th March. Meanwhile on 1st March I returned to my GP as the night nerve pain had not decreased and he prescribed MSContin -5mg. This relieved the pain on the first occasion, but not subsequently. He had tested my reflexes and I wondered what this was all about. At Jack's funeral the effort of walking steadily down the Chapel aisle through the Returned Servicemen's Guard of Honour was most difficult.
The day before Jack's funeral I saw Orthopaedic Surgeon for final visit re knees. The operation had been successful and my knees were going well. When I mentioned my back problem he spoke with an eminent back specialist who suggested a CT scan. On 5th March I had an Epidural Injection at Toronto XRay. The doctor was most reluctant to perform this procedure as he was of the opinion that there did not seem to be anything wrong in this area.
By 6th March I was still experiencing pain during the night, but not so much shooting nerve pain. However, my legs seemed to be failing and losing strength. The following day I required the use of a walking stick whilst in the house. Monday 8th March saw me at John Hunter Hospital for an MRI Post Epidural. My daughter Venessa took me there and spent the day with me. The verdict was all OK, so there we were, still realising that there seemed to be something radically wrong with my legs, but no diagnosis to date. The pain worsened during the night so I returned to my GP on 9th March when a larger dose of MSContin was prescribed and on 11th March I was admitted to Toronto Private Hospital. The following day I had reduced mobility resulting in two falls and staff was instructed to be with me while I was ambulatory.
By 13th March a lifter had to be employed to move me as l had lost all strength. I was paralysed from the waist down with hands, arms and voice affected.
By 16th March I was taken by Ambulance to a Neurologist where I was given a Nerve Conduction Tests, confirming a diagnosis of Guillain Barre Syndrome.
I was then transferred to Lake Macquarie Private Hospital for a five day course of IV Immunoglobulin treatment, known as the Intervention in layman's terms.
In earlier days this had been unavailable for patients and recovery was thought to have been much slower. I had never heard of this illness previously as was the case with most people, and it is written that one in 100,000 contract this condition.
On 25th March I returned to Toronto Private Hospital, too ill for ReHab so into Medical Ward and with a bladder infection that was to plague me for some time. Blood tests also revealed critically low Sodium Chloride levels so the physician placed me on IV monitored Saline Therapy and a high salt diet. I had very little use of my hands and now required assistance with eating.
During this stage of my illness I was mortified that I had to wait for assistance with my meals and with my personal requirements. The sling lifter (or torture machine, as I came to call it) nearly reeled my body apart with considerable pain around my anus. Other lifting devices had been employed in earlier stages of my illness, before graduating to the sling lifter.
Apart from the wonderful assistance from my daughter Venessa, I don't think I would have made it. I could not even make contact between my hand and my nose so feeding myself was impossible, In time I could lift a teaspoon but not if it contained any food because of the extra weight. One of my visitors came at lunchtime when I was making the usual mess and he offered to feed me, having just finished feeding his little grandchild. I gladly accepted this offer.
The ignorance of nursing staff regarding my medical condition was disappointing as many seemed to think that I suffered a stroke and were unfamiliar with nursing GBS patients. My daughter had contacted the GBS Association in Sydney and the literature supplied was extremely helpful. It took me awhile to read the ‘blue book' but it was invaluable as I could follow the progress of my condition as outlined. I felt comforted to read about others who had contracted this illness and had recovered. Even though I regularly complained to my daughter that I was not improving she would tell me that in days past I had been unable to move part of my body which I could now move. I was visited on two occasions by an ex-suffer of GBS, a member of the Association in Sydney who was living a normal active lifestyle. These visits were morale boosting.
On 1st April blood tests showed a Staph. A blood infection and l was immediately transferred to John Hunter Hospital Immunology Ward for treatment. Source of the infection was suspected to be from a Canula. A course of IV Antibiotics followed and removal of the urinary catheter. Soon a P.I.C. line was inserted for antibiotic treatment. I was now in a four bed ward with three other ladies, even though we were paying as private patients. While in this hospital I was most despondent and in great pain, especially during the nights. My daughter was aware of my condition and visited before work and after work and I more than welcomed these visits. I was given morphine based pain relief medication which reduce pain very much, but produced hallucinatory dreams, many particularly troubling. With the pain and these dreams I must have given the other patients a bad time.
I had been in John Hunter Hospital seven days without a shower, or being out of bed. My daughter complained on several occasions and I was finally given a shower, but was informed by staff that I could only be showered every second day as there were not enough showers for the ward. A suitable chair was also provided for me.
Tests were ordered, with a bone scan showing no abnormality, and other tests including Trans Oesophageal Echo proved all right. These tests were necessary so I could return to Toronto Private Hospital free of infection. I still required feeding and help with all basic care inclusive of denture cleaning.
After 18 days in John Hunter I returned to Toronto Private Hospital Medical Ward and by this time had made some progress with feeding myself with a spoon. I was soon transferred to ReHab Ward and had a few leg exercises in bed and some exercises in the gymnasium. I still required a little help with my meals and, although I tried to feed myself, continued to experience the utmost difficulty in handling the cutlery. I was as messy as an 18 month old toddler and was pleased to accept the large protective feeding bib from the staff.
Physically my strength had left me, and my leg muscles had atrophied, as had also happened to my arm muscles. I had also lost a great deal of weight. Around this time my hair stopped growing, as did my finger and toe nails. A result of the pain killers was constipation which was to plague me for some time.
During these months of lying on my back movement gradually returned. This was known as the Reversal, and over several months feeling eventually returned from my waist downwards, the feet being the last to recover. On one occasion I found I could move my knees and demonstrated to my daughter. A couple of days later a nurse came into my room and saw me moving my knees. She was so excited that she ran into the hall and called everyone into my room so I could demonstrate. Staff and visitors would praise my progress, reminding me of what I had been like in earlier days. The pain and bad nights continued, as did the bladder condition. My doctor implemented pain relief schemes and was particularly supportive and I was sorry to see her leave for America. She had faith in me and felt sure I would be walking out of Toronto Private Hospital within four weeks.
Progress was slow, but soon my hands were attempting to obey my commands. One day I struggled for a long time to do up one button on my cardigan. The following day I demonstrated my ability on doing up all eight buttons. These seem small goals in retrospect, but at the time it was real progress. Soon I graduated from the Sling Lifter (the torture machine) to a different type where I had my feet on the ground for the first time in months. I could eventually use bobby pins to give myself my usual hairstyle, small achievements but encouraging confidence in my recovery. Over time and thanks to Physios I was able to graduate from a wheelchair into various walking frames. My ambition was to leave hospital using a walking stick.
While in ReHab I had a faIl one morning, the result of me going one way and my walking frame the other on uneven drainage tiles in the bathroom. XRays showed a fractured Sacrum. I was in a lot of pain radiating from my spine and across my buttocks whenever I moved any part of my body. I was prescribed major pain killers again These were fairly effective, but made me a bit dizzy.
So a week later I fell down again in the bathroom. This time I fractured my left wrist so ended up with a plaster on my arm. I suffer from Lupus and the Prednisone taken to control this condition also has a deleterious effect on skeletal structure. My legs were very swollen and heavy so had difficulty in walking. During late June I wound up spending time in John Hunter Hospital for observation and it was found that I was low on oxygen.
In July, I had the misfortune to contract Bronco-Pneumonia with Multi Resistance Staphylococcus (Golden Staph) which was treated intravenously with the Antibiotic Vancomycin. I had blood transfusions and eventually recovered, although I noticed a tremor in my hands which had not been there previously. As well I had clots on my lungs and scar tissue. I returned to Medical Ward and became paranoid about moving to Re-hab on the floor above where I seemed to have falls and contract life threatening conditions.
I finally received good news that my discharge date was set for 3rd August 2010, after nearly five months of hospitalisation. Early in my illness I had given myself six months in hospital to recover so I was pleased to know that I was breaking this time frame. I have been told of other patients who were hospitalised for much longer periods so I should have been pleased.
Well, the 3rd August arrived and. my daughter brought me home to Fennell Bay, not as I had planned on a walking stick, but using the walker kindly supplied by the Department of Veterans Affairs. Within a week I dispensed with the walker in the house and was able to move around by holding onto furniture when necessary. With the weather still cold I developed chilblains on my hands, which I have not had for many years.
I am disappointed with the condition of my lower legs and feet apparently left like this from GBS. My GP advised that GBS is still active in my system so perhaps they will improve. My feet feel like lumps of heavy clay, with pins and needles, and they don't communicate with my brain very well. Also there is still some swelling in my legs but this is improving, thanks to diuretics. My hands are still affected by GBS, with finger tips numb and manual dexterity impaired. I'm left to wonder whether this is 'as good as it gets' or if I can expect some improvement in time.
I had found during my hospitalisation that the general public is quite ignorant of GBS, as initially I had been, due to its rarity. My GP said that after nearly 30 years of practice he had not encountered the condition in a patient previously. I think my recovery has surprised the medical profession, as I am 81 years of age.
Dulcie Hartley 20.9.10