Almanac Life: 100 Up/I’m So Vein

 

 

A few weeks ago, I brought up a century on a reclining chair in Caulfield South. I have the laminated certificate and ornamental pin to prove that I gave blood for the hundredth time.

 

My regular contribution of vital bodily fluid has not been entirely altruistic. In 2000, I wanted to increase my life insurance, but this required a slew of blood tests to convince the insurers of my insurability. One of these tests revealed the need for further testing of my iron levels, which led to the discovery that my serum ferritin (iron) level was around 1800 micrograms per litre. For context, the “normal” range for an adult male is 20-300 micrograms per litre.

 

I was therefore diagnosed with Hereditary Haemochromatosis (aka HH or hereditary iron overload disorder) as was confirmed by a genetic test soon after.

 

Haemochromatosis Australia provides this definition:

 

Hereditary haemochromatosis (inherited iron overload disorder) is the most common genetic disorder in Australia. About 1 in 200 people of northern European origin have the genetic risk for haemochromatosis. People with the condition absorb too much iron from their diet. The excess iron is stored in the body and over time this leads to iron overload.

We all know that not enough iron causes health problems, but few realise that for some, too much iron is also a problem. If undetected and untreated, the excess iron can cause organ or tissue damage and can potentially result in premature death.

Haemochromatosis tends to be under-diagnosed, partly because its symptoms are similar to those caused by a range of other illnesses.

Both sexes are at risk from haemochromatosis. Women tend to develop the condition later in life because of blood loss during childbearing years. However some women will develop symptoms at an early age.

The good news is that if haemochromatosis is detected before damage occurs, it can be easily treated and is no barrier to a happy and successful life.

 

Despite my obvious iron overload, I did not knowingly have any of these symptoms, especially the last one, honest (again, from the HA website)

 

In the early stages of iron overload caused by haemochromatosis, symptoms may be completely absent or very nonspecific.

 

These may include:

 

• general fatigue and weakness
• weight loss
• abdominal pain
• joint aches

 

These symptoms, if present, take time to develop. No two people are alike, and symptoms will vary from person to person.

In cases of higher levels of iron overload, symptoms vary depending on the organs affected. Higher levels of iron impact the liver, joints, pancreas skin and sex organs and the symptoms may be different from person to person.

Higher levels of iron can cause cirrhosis of the liver and liver cancer. People with liver problems may develop an enlarged liver, jaundice, easy bruising and pain in the liver.

The heart can be affected in rare cases and symptoms will include palpitations due to damage of the heart muscle, breathlessness with physical activity and swollen ankles.

If the pancreas is affected this may lead to type 2 Diabetes Mellitus with symptoms including thirst and increased need to urinate, skin infections that don’t heal well, blurry vision, dizziness and weight gain or loss.

Rarely, people will present with a grey or bronze discolouration of the skin.

Women may experience irregular periods or early menopause and loss of libido while men may experience impotence and shrinking testicles.

 

The treatment for HH then, as it still is now, was ongoing, regular venesection i.e. giving blood. After being referred to a specialist gastroenterologist, I commenced weekly visits, to what most people knew then as the Blood Bank, at its Southbank location.

 

A typical whole blood donor will give blood every three months. In my case, I needed to visit weekly until my ferritin levels were reduced to normal levels. Unfortunately, I wasn’t aware of the preparation required before each donation (in summary, plenty to drink and eat in the preceding 24 hours) and I had what was politely termed a “reaction” at my second visit. Yep, I fainted, which came as no surprise given that I once fainted while Mrs Swish was having an internal ultrasound.

 

Forever marked down as a fainter, I recall that it took maybe seven or eight donations within a couple of months before my iron levels were reduced to an acceptable level. I was very well acquainted with the amazingly caring and friendly staff at Southbank and looked forward to the post-donation repast of party pies, milkshakes and bikkies. The technical term for me was a “therapeutic donor”.

 

My specialist also sent me off for scans to keep tabs on my liver (one of the main organs that HH can affect), which was pronounced as “fatty” but otherwise ok. I bypassed his kind offer of a biopsy.

 

Regarding the insurance, the bloodsuckers there allowed me to raise my level of cover, but applied a significant loading, despite my protestations that I was regularly giving blood and was in the care of a very good specialist.

 

For the next decade or so, I continued to donate quarterly, with scans every year and six-monthly blood tests. Any latent fear of needles disappeared once I realised that I could always trust the phlebotomists to insert and remove the necessary metalwork with little pain or bruising at my end.

 

At each visit, donors are asked many screening questions, which seem to change every time. In my early years, my blood was discarded – I was effectively getting the life-saving venesection that my body needed, so the relevant questions were those pertaining to my recent health, medication changes and so forth. Somewhere along the line the green light was given for my blood to be used, either for transfusion purposes or perhaps for other blood products. This meant that the questions such as (and I’m paraphrasing here)

 

“Since your last donation, have you had unprotected male-to-male sex in a prison lockup with a tattooed New Guinean?” became just as important as those about my general health.

 

My early Southbank visits operated without a booking system as such – you just arrived  and waited your turn. Seeing as I was paid by the hour and had client responsibilities at work, this was a bit tricky. Once a booking system was implemented by the Blood Service, this narrowed the time that I’d need to set aside from 2-3 hours to 1-2 hours. Things were even better when I was able to use what was known as a “mobile service” that was set up every few months at a local church. Whilst nowhere near as luxurious as Southbank, the almost wartime feel gave the operation a more personal vibe and operated into the evening, so visits after work were very convenient. The apre-donation refreshments were restricted to a glass of industrial strength cordial and Arnott’s assorted, but it was still an enjoyable (and life-saving) experience.

 

My original specialist ceased his private practice about ten years after he took me on, and I was left somewhat high and dry. This was disappointing as he was a very good communicator, but I understood that his hospital and research work took priority from then on. I found a local gastroenterologist who I never really felt comfortable with, but they continued my treatment pattern. Somewhere around this time I brought up my half-century of venesections, but I had to dig in because I was hoping for a hefty three-figure innings.

 

During the mid-2010s, the Blood Service opened a new clinic in Caulfield South and this allowed me to settle into a convenient routine of quarterly Sunday morning appointments. Initially some of the Southbank staff were also there. The refreshments went up quite a few notches with temptations such as flavoured milk, Freddo Frogs and pretzels available, but I found that nothing beat party pies and sausage rolls for morning tea.

 

My score kept ticking over but late that decade I almost needed to retire hurt. I couldn’t sleep due to leg cramps, my legs became heavy and sore and I had days where I could barely function. Working was out of the question. After a mis-diagnosis with Parkinson’s Disease by one neurologist, my usual iron tests revealed that my iron levels were below(!!!) the normal range. My HH specialist greeted this with an incurious shrug and suggested that I maybe skip my next planned donation, no biggie. Not long after this I got the great news that I had prostate cancer.

 

It was a big few months.

 

I was discarding medical specialists left, right and centre. The good news was that my new neurologist cast extreme doubt on the PD diagnosis and he was spot on. My first urologist got the flick after I realised that he wasn’t particularly experienced with robotic surgery, and I found myself in the warm hands of Melbourne’s number one urologist who had performed the op almost 1000 times.

 

But another telling move was to replace my uninterested gastroenterologist with a very caring and alert haematologist, who was also well connected with Lifeblood (the new name for the Blood Service). Her recommendation was to run my iron levels above what I had been doing for the last two decades, before settling back into quarterly venesections and annual specialist visits. She also suggested that I visit a gastroenterologist to investigate whether reasons for my sudden low iron could be found internally – fortunately all was well from that perspective, but at least I could see that she showed care and curiosity. I eventually recovered to the extent that I could continue to ply my trade as an electronic abacus technician.

 

Post my prostate surgery, it took a while before Lifeblood would allow me to resume donations, so I was stuck in the eighties for a while (and not for the first time).

 

Apart from the certificate and pin mentioned at the outset, my 100^th visit was not accompanied by a confetti cannon, nor was I photographed for the Caulfield South Wall of Fame (missing the opportunity to join the great Romano Negri).

 

This minor disappointment was over once I received this text a few days later:

 

Hi Mark,

We’re glad you came along for your therapeutic donation and so is the team at Alice Springs Hospital, NT, because your donation is headed there today for the next step in its journey.

Spoiler: it’s about to save a life over there.

Thanks, Lifeblood

 

No, thank you Lifeblood, for the continued professionalism and care that you show me and thousands more every day.

 

P.S. – Please visit the Haemochromatosis Australia site for more information.

 

 

Read more from Swish HERE

 

 

 

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