An article from the December 2001 Newsletter.
This is a true partnership, not just in marriage, but in living. Scott and Alison have had many trials to share, and have had to really work together as a team.
Before Diagnosis:
Scott was born in a small country town in New Zealand in 1967. He had a
congenital heart defect, with an extra heart valve. As a young boy he was
prone to bronchitis. His adopted family migrated to Queensland, seeking
warmer climes.
For the last twelve years, he has been a skilled labourer with one of the
biggest employers in Queensland. While on the job, he was rushed to hospital
with a heart attack at the age of twenty-two. He had Wolff Parkinson’s
Syndrome, and required open heart surgery to correct the problem. Scott’s
recuperation time was lengthy, as he had collapsed lungs during surgery.
Eventually he healed well, with no infections. Unusually, Scott reported
seeing “squiggly little white lightening bolts” out of the corner of his
eyes. This was put down to post-operative trauma of some kind.
Scott and Alison:
In 1991, I met Scott. We dated, and became engaged. Scott seemed tired all
the time. One night he went to sleep while driving home from work, and
rolled the car. It was “totalled”, but Scott walked away unharmed. He was
lucky to have been asleep and therefore relaxed, when the impact happened,
or he might have been a quadriplegic.
In 1993, we married. Scott’s health seemed just like that of an average
normal Aussie bloke. He weighed about 75-80kgs.
But from 1995 onwards, I noticed Scott’s health start to decline. He seemed
always to be sick with sinus, diarrhoea, flu, etc. Scott worked a rotating
shift for two years, which included day (6am-2pm), afternoon (2pm-10pm) and
night (10pm-6am) shifts. His health declined when he started these shifts.
We both had gastroenteritis in December 1996. Scott was badly affected,
collapsed on the floor, and went to hospital.
During Addison’s
Disease:
*January 1997, Scott presented with continuing tummy troubles, and generally
feeling unwell. The doctor thought it was a flu bug. The symptoms persisted.
Then it was decided Scott was suffering from stress or ulcers. Scott was
quite disgusted, and wanted some immediate action. He felt that he wasn’t
being taken seriously. Another medical opinion was sought. Meanwhile, Scott
was using so much Mylanta® and Gelucil® that, if he had cut his arm, he
would have bled white not red!! He was experiencing a lot of gastric reflux,
when eating, and sweated profusely with physical exertion.
I was trying to do what I could for him too. We used Travel Well Ginger
Capsules® for nausea.
Later, another doctor, thought Scott might have anything from an STD to
Hepatitis. Scott insisted he didn’t have an STD! Blood tests were negative
for hepatitis, but showed that Scott had had Ross River virus, sometime.
Zantac® was prescribed for the stomach problems, blamed on stress.
We tried two aromatherapy oils: peppermint for the stomach, and Ylang Ylang®
to relieve nervous tension, stress, mild anxiety and insomnia. Additionally,
Scott experienced some stomach wind and bloating. He took charcoal tablets
when necessary. He also had mouth ulcers to cope with.
Scott returned to the second doctor, still complaining.
* November 1997, he
had an endoscopy. My father-in-law moved in to help me with Scott. Once
home, Scott slept twelve hours straight. His whole body was quaking with
tremors, from his toes to his head. I was very worried, and wouldn’t take my
eyes off him for a second! More blood tests were taken, but they showed
negative. The doctor advised Scott to learn to relax, and see a
psychiatrist, as perhaps it was all in his mind. The doctor also enquired if
mental illness was in Scott’s family. Scott naturally, never went back to
THAT doctor again!!!
Scott was having particular food cravings during this time: spoonfuls of
Vegemite® (Yuck!), prawns, popcorn, salt and vinegar chips, pig’s trotters,
ox tongue and large deep- fried dim sims ( + heaps of salt), liver and pate.
He experienced leg cramps and blurred vision.
* January 1998, Scott weighed 99kgs, was still doing shift work, and still feeling unwell. He had more days off work. He was tired, sick, and had had a “gutful of bloody doctors!”
* February 1998, was the same. Scott would feel hungry, eat and then throw up violently. Sometimes he’d feel panicky, with palpitations, like he was having a heart attack. At night he had to urinate often. I checked for diabetes, but the strip result was ‘normal’.
* March 1998, Scott
strained his shoulder and neck at work, and had more time off. Work
requested that Scott have a medical, and visit the Occupational Health
Nurse. The report showed he was slightly overweight, and had a higher than
normal result for alkaline phosphatase, alanine transaminase (ALT), Gamma
Glutamyl Transferase (GGT) and cholesterol.
Socially we went to a family wedding, but during the meal Scott started to
sweat profusely, felt very weak and couldn’t drive home.
I purchased an Omron® Automatic Digital Blood Pressure Monitor, and a Braun®
Thermoscan Ear Thermometer, to keep a check on things.
* April was a better month, Scott went horse riding, and had one sick day.
* May was like
having flu again. Scott’s skin looked “grubby”, especially on the forehead.
I thought the sweat from his riding helmet was causing the “grime”. He still
experienced heart palpitations.
I was wracking my brains for an answer, and generally going frantic in my
efforts to help my husband in any way I could. The medical profession didn’t
seem to be able to do much. I pride myself on finding out about Addison’s
Disease before Scott was diagnosed. I had been reading an American health
book: “Listen to Your Body”, ( edited by Prevention Magazine). It listed all
the symptoms of Addison’s disease, and even mentioned John F. Kennedy
managing to live a normal life with it.
* June 1998, Scott
finally plucked up the courage to seek another doctor ( No. 3). Scott was
tired, nauseous, and felt like he was dying. He was given Pepcidine®, and
Zantac®, and asked to come back in two months, as the doctor was going
overseas.
Scott couldn’t wait that long. He was having feelings of foreboding,
nightmares, bad waking dreams, and had had his first migraine. He went for a
brain Cat scan on 27th June. It was clear, no tumour. An ECG suggested the
heart palpitations might be linked to the Wolff Parkinson’s White Syndrome.
Then things REALLY
started happening – medically speaking.
* 6 July 1998 – full blood count, tests for hepatitis and diabetes.
* 10 July - Chest X-ray looking for tumours, and tuberculosis.
* 13 July – Cat scan of abdomen, and Barium X-ray.
* 14 July – ACTH Test for Addison’s Disease
* 16 July – Diagnosis of Primary Addison’s Disease.
* 21 July – Prescribed medication: Cortisone Acetate.
After Diagnosis:
Scott was referred to a doctor who also put him on Florinef. He explained
Scott’s body produced antibodies.
At 4.30pm, Scott took his first Cortisone tablet. Between 4.30 and 8.00pm,
he felt tingling all over his body, then pins and needles on his tongue,
lips, fingers, hands and feet. He had sweaty palms and was very
uncomfortable. His jaw felt tight, he had a stinging sensation in his nose
when breathing, experienced shortness of breath, and found his fingers and
toes very cold. I was extremely worried, and rang the chemist. He advised
that Scott was probably having a mild reaction to the medication, and to
stop taking it immediately, and go to the doctor ASAP.
His specialist suggested a graduated dosage, increasing the Cortisone by
half a tablet each day. We were to report on the side effects. By day 6,
Scott was on 7x 25mg Cortisone. He was very moody, so it was too much. The
dose was reduced down gradually back to one tablet twice a day. This way we
found out the best dose for Scott.
Scott developed thrush and boils.
* August, had more blood tests. The dose was increased to one tablet 4 times a day for a week; then reduced to one tablet in the morning, and half in the evening with food. All August was off work.
* September was similar. He was referred to an endocrinologist who was very helpful. He explained about Addison’s disease, and did a full physical to rule out any other problems. He suggested Scott was suffering from a physical stress, and under medical supervision was advised to increase the Cortisone to treble the dose for two days, then drop to double for two days, and then back to his normal dose. He also mentioned that Scott could have died “any old tick”.
Another wedding in
October, was the first outing we had been to in five months. After we got
the wedding photos back, I noticed Scott seemed to have a marvellous tan,
despite being home all the time.
More blood tests followed, and a visit to an eye specialist. Scott was very
depressed. He was advised to exercise gradually, to increase fitness levels.
The doctor also explained that people who lose their ‘health’ often grieve,
and can become over-anxious about themselves.
* November, Scott went swimming and riding again. With the doctor’s consent, he started mowing the lawns and walking the dogs. By the 18th, he was back on “light duties” at work, doing a different job. He was told he couldn’t continue his previous position, as the employer wouldn’t accept someone on medication. Going back to work was hard physically and emotionally for Scott. He just took one day at a time. The guys at work either treated him like a “bludger”, or thought he had AIDS, worried they would catch it too. So they avoided him like the plague.
* December, he worked day shifts. He weighed 106kgs, and had very itchy feet with red blotches. Scott was prescribed Diprosone® cream for a fungal infection.
* April 1999, Scott’s employer wanted him to “retire on medical grounds”. Scott’s specialist supported contesting this. The specialist wrote that Scott had had no problems since diagnosis and medication, he’d recovered energy, had no vomiting episodes, and had normal blood results. Scott had made it through a Queensland summer, and should remain a valued member of the workforce.
* July 1999, Scott had an abdominal ultrasound looking for gallstones. No stones, but his liver fats were quite high, and probably caused great discomfort, so he’s been on a low fat diet.
The Present:
* May 2001, Scott weighs 102kgs. His health is good, or the best it has ever
been. Liver fats still high, cholesterol, 4.7. He sees his specialist every
four months, and is working full time on a seven-day rostered day shift. He
still worries about his health.
Current
medication:
25mg Cortisone Acetate 2x day with food, and 1x 100mcg Florinef am.
He functions better if he has his medication before 8am, and 8pm. He also
tries to have a sleep-in on the weekends he’s not working. This routine
seems to help. Scott carries spare medication for work, in the car, and I
carry some in my handbag.
Scott knows himself, when an adrenal crisis is coming. He feels: irritable,
over-tired, verbally cranky, physically aggressive, dizzy, nauseous, and has
vision disturbances (those white squiggles). I know just by looking at him.
I quickly whip up some instant noodles, and give him one cortisone tablet
with a drink immediately. Five white blotches appear on his cheekbones, and
the skin under his eyes gets dark and puffy.
Our doctors have warned us to be wary of being injected with ‘live viruses’,
with regard to immunisation. Scott has had Hepatitis A and B injections,
with few side effects. He did recently discover he also has an allergy to
the antibiotic Cephalosporan, after being given Ceclor CD® for an infection.
Scott has Medic Alert® membership, but had to make a complaint recently,
when paramedics didn’t take notice of the information on his necklace and
card.
The Good news.
My father-in-law agrees with me that Scott is now the healthiest he has ever
been. So, to all those with life-threatening illnesses, and all the
wonderful people who care for them….there is hope, we just have to take one
day at a time.
Scott and Alison’s Tips
and Tricks:
· For a ‘bad day’, Alison gives Scott one St. John’s Wort tablet with food.
It has a sedative effect, and ‘knocks him out’ for a while.
· Lucas’ Pawpaw® ointment, and/or Comvita manuka® Honey for wound healing;
Poke Root Herbal Ointment® for sinusitis and earache; Ylang Ylang
Aromatherapy Oil®; Ego® Fungo cream & QV Wash®; Canesten® for thrush; and
Staminade® sports drink.
· All our house windows are tinted, and we have whirly birds in the roof for
cooling in the hot Queensland summers.
· Take medication on a regular basis.
· Recognise when you need more rest.
· Recognise the signs of a health downturn or an Adrenal Crisis, and respond
to them quickly.
· Be persistent, and work together.
