An article from the September 2001 Newsletter.
So, here is my
complicated medical history. And it IS quite complicated.
I am under several specialists at RNSH, Sydney, NSW.
For years I have suffered from chronic urinary tract infections, and have
been catheterised for quite some years.
I also have Addison's Disease. It was detected by my kidney specialist,
about five years ago. A routine test showed evidence of ACTH deficiency. I
had been feeling exceptionally tired, running out of energy by about 11am in
the morning. I was reluctant to see 'another specialist', but if I hadn't, I
would have died. The CAT scan of my brain, showed that, yes, I had a brain,
and also a small tumour on the pituitary part of my brain.
Yet another specialist on pituitary tumours at RNSH was called in. He
decided that this tumour was not the cause of the Addison's symptoms. There
was much discussion, and the morphine, (from the infusion pump I use to
control pain), was possibly the culprit. (*note: Chemist question issue
before last, where morphine was discussed, as carrying a warning to people
with adrenal suppression).
The chronic back
pain I have, is a result of extensive spinal surgery in the 1980's. Three
operations attempted to deal with spinal damage. A morphine pump, situated
just under the skin, feeds a constant supply of morphine slowly over the
course of each day. This helps me cope with the extensive and chronic pain.
I am finding it increasingly hard to walk or stand for any length of time.
Shopping is barely bearable, if I hold on to a trolley for a short time.
Otherwise I can only manage a few steps, and get breathless and tired.
I also tend to get a lot of chest infections. I can develop bronchitis,
which quickly changes to pneumonia. It is now a difficult choice, whether to
go in to hospital or not, with such an infection. As a result of my weakened
immune system, I have several times picked up hospital-derived golden staph
infections, and MRSA (Methecillin Resistant Staph Aureus). Sometimes the
treatment is better done at home!
I have recently undergone an anaesthetic procedure, to site a semi-
permanent cannula in my jugular vein. This enables the direct delivery of
antibiotics, when necessary. My veins are thin, and collapse easily, so the
cannula provides 'easy-access'. It is a tricky procedure in itself, and
cleanliness must be a priority.
In the last few
years particularly, my general health has deteriorated. The MRSA has
remained, and lodged itself in one breast, causing a discharge. After many
scans and antibiotic courses, a small tumour was detected. A biopsy was the
next course of action, but a wise specialist (- yet another one!) felt that
to fiddle, may actually spread the infection. I am happy to say that this
part has cleared up considerably with his wise advice and cautious
treatment.
My right toenail was the other site of infection from MRSA. Consequently,
I'm getting to know my podiatrist quite well!
This infection is far reaching and persistent, and has also lodged itself in
my bladder and urinary tract. The catheter (unfortunately) makes a perfect
environment for infections like this to spread. Millions of red and white
cells become infected and enter the urinary system, entrenching this
infection in yet another site.
My lungs are increasingly becoming a problem for me. I often only get about four hours sleep at night. Mucous collects and must be expelled. I really require oxygen full time, but find that difficult to tolerate. My brain seems 'fuzzy' with the extra oxygen. I also have to use a ventilator. The room air needs to be warm all year round. I have to sleep propped up, or sit in my favourite rocking chair. According to my respiratory specialist, I have Grade 2 respiratory failure. Grade 4 is the worst, and means death. I often wonder if my troubles began because my mother was a chronic heavy smoker, before her death, when I was 16. I had many bouts of bronchitis as a child, so perhaps already had a weakness there.
I handle the chronic
pain with the morphine pump, topped up by four-hourly pain killers. My back,
hips and other areas cause severe pain. I have tried anti-inflammatory
medication as well. We recently found out that the morphine pump was
'under-performing' by 20%. So this will be rectified soon, and generally
pain management will improve.
My health is delicate. Medication is a constant thing to be dealt with. I
take over 54 pills and potions per day! I constantly have to adjust the
steroid replacement dose, to cope with acute infection and other
complications. I take Cortisone Acetate in quite large doses, and have to
cope with its side effects.
I seem to be developing something else 'auto-immune'. Antinuclear antibodies
(ANA) keep showing up in my blood tests. They can be indicative of Lupus,
and some other related conditions. It may even result from the inflammatory
process in my lungs.
At all times in my
life I have felt God close to me. I grew up as an orthodox Jew. I caused
quite a stir when I married my Anglican husband.
We have three fine sons. One travels extensively overseas, and lives with
us, when 'at home'. The other two are married. One has a son, Harrison, the
other a daughter Isabelle. The grandchildren were born 12 days apart.
At times of crisis, God has been with me. A Ugandan minister who was
visiting, prayed over me, with some others, when I had the pituitary tumour.
Later, it was not in evidence on the scans.
My local church is
very supportive. I am still able to share in Bible Study, church services,
and some outings. I spend my time enjoying God's creation. The early morning
sunrise. The call of birds. The blooms in the garden. All these things are
very precious.
My life is not straight forward, nor easy. But I find ways to cope with my
various problems. I have a trusted medical team, and a good hospital. We
work together to maximise my health outlook. I take each day, and find good
things in it. When I stop to think about it…
ADDISON'S IS THE LEAST OF MY WORRIES.
