Medical dilemmas part 2

So to recap, I had fat kid syndrome in Primary school.  This photo shows a comparison between me and my sister, I was in year five when this photo was taken.  Then I trimmed down in High school to the point where I would actually be seen in a bikini, though I still preferred to wear a one piece swimming costume in public.  We did like to sun bake a bit, so this second photo with my sister shows us in the backyard trying to get a bit of colour into our skin. I am guessing I am in about year eight, so maybe 14 years old.  I never achieved the slimness of my sister, so always saw myself as fat unfortunately.  But looking at this bikini shot now, I wouldn't call myself fat.  What a shame us girls are always so hard on ourselves and are always so obsessed with looking fat.  It wouldn't surprise me if even my skinny sister thought that she had a few troublesome fatty areas that could be fixed with a low fat diet.

Also through my teenage years I remember being quite susceptible to colds and runny noses, and in late High school I wore braces to straighten up my crooked teeth.  Funny though, I can't seem to find any photos of me actually wearing braces even though I wore them for two and a half years.  I might have to scour some other people's photo albums and see if I inadvertently allowed myself to get snapped while showing my braces clad teeth.

So, by the end of year twelve, a strict low fat diet and the wonders of hormones that produce those lovely womanly curves, I had a body that I was pretty happy with, but it was going to be a short lived affair. Because it was at the end of that year, just before I turned 18, that I discovered my melanoma. Interestingly, I can't see the offending mole in the bikini shot above, so I guess it hadn't grown yet.

Oh and by the end of my first year of University I had stuffed up my eyes and now suffered myopia. I got my first pair of glasses, a trendy red pair, but cannot find a single photo of me wearing them.  In fact to find a photo at all of me wearing glasses I have to fast forward to 1993, almost five years later. I must have worn contact lenses for a long time, because during the intervening period there are plenty of photos of me, just none of them involve me wearing glasses.  This photo is of me and my truly beloved holidaying in Bali. Most Bali photos have me glasses free, this is a rare one where we are both wearing glasses.  'I will if you will'. Plus, of course, I had been diagnosed with PCOS.

My twenties saw me diagnosed with hashimotos thyroiditis, flat feet (ha ha), and I suffered three DVT's on separate occasions. Following on from part one, the third DVT I self treated with a bunch of aspirin and went back to tell the doctor.  Naturally he wasn't happy with me, I have found during the years that doctors don't really trust the blood thinning properties of aspirin for DVT's, maybe because it's too easy and cheap. He prescribed me a prophylactic dose of heparin, clexane, to be exact. This was designed to prevent me from getting another clot through out the remainder of my pregnancy.  Now this was pre doctor Google, so I headed off to the pharmacist and sat in his back room reading his text books in order to get a handle on what I was prescribed and its relative risks.

I wasn't that happy about taking it, but with a long haul flight in the near future, I decided that maybe it would be prudent.  So began my almost 6 months of daily injections.

 

Now these needles, are fat.  Heparin has a relatively higher molecular weight (or is it lower? I'm not sure as I'm not a chemist) compared to other injectables, so it needs a fat needle to deliver it.  It was Steve's job to inject me each day into my abdomen.  This became quite tricky as my belly grew throughout pregnancy. Sometimes when he hit a small blood vessel I would bruise up terribly.  It was not a good look, a pregnant woman looking like she had be battered and beaten around her belly.  We duly took all the heparin I needed on our 3 month overseas jaunt, injecting in airport toilets and the like.  Feeling guilty about transporting a small bag packed with syringes and dreading being searched at customs and having to try and explain ourselves.  Luckily we were never detained, so did not have to test our translated letter explaining our unusual cargo.

By the time that I got back from our overseas trip I had less than the last trimester to go. But, I had developed a sensitivity to the clexane. Every night I broke out in itchy hives all over my body.  We tried another heparin called fragmin.  It did the same thing.  As I was so close to the end of my pregnancy, and now in the highest danger period for developing a clot, I had no choice but to continue with the heparin, but counteract its side effects with an antihistamine.  Poor baby, being assaulted with two drugs now, it somehow did not surprise me that by 6 weeks old this little baby was riddled with eczema and highly allergic to dairy and oats.

I got through the pregnancy and birth and was given a different clot prevention drug in hospital.  Another type of very expensive heparin that I was only allowed to take for the short time that they got me established on warfarin as the heparin was so expensive.  I did my time on warfarin, again, along with all the accompany blood tests that keep an eye on the viscosity of blood, and then settled down to mothering my two young children.

 

Four years later, at 32, and regarded as geriatric by the medical profession, I had baby number three. This time I was a bit naughty and avoided the whole heparin thing altogether.  It was kind of in the too hard basket for the medical profession. I was at heightened risk of DVT, but allergic to the preventative treatment.  So it was easier to ignore the situation.  Any time that I felt "clotty" I took a dose of aspirin, but otherwise made my way through the pregnancy unscathed in the blood clot department.  It was about this time that my father suffered a pulmonary embolism.  Here finally was a family connection to my odd tendency to develop DVT's.  He saw a specialist for his PE and had a blood test that showed him as having a genetic mutation called Factor V Leiden.  This was a relatively new discovery in medical science that seemed to explain why some people are more prone to developing blood clots than others.  I decided to go and have my blood tested too, as it was reasonably likely that my blood would show something similar. What I didn't expect was that I would also have the genetic mutation, but I would have it in spades. Where my father was heterozygous for the gene, I was homozygous, meaning that both mum and dad had supplied me with the offending genetic mutation. Funnily, mum wouldn't believe that she too had the gene and went and got herself tested, I guess she didn't fully understand the science of genetics.

 

Now homozygous for factor V Leiden is a big deal  in the medical profession.  Anytime I mention this little genetic quirk I get instant attention and fascination from my medical practitioner. The specialist who diagnosed me with it pronounced that if I was to get one more DVT he would see me on warfarin for life.  This bothered me a bit, so I decided to take low dose aspirin instead to try and ward off any potential clots. While he readily agreed with this approach, he informed me that there was absolutely no evidence that aspirin worked on thinning venous blood.  I took aspirin anyway.

 

So if having a rare genetic mutation that increases my chance of DVT's to 800 times the rate of the rest of the population wasn't enough, my thyroid was ready to rear its ugly head again. Over the years I had had the odd thyroid ultrasound, and it was steadily growing slightly larger and had decided to start to grow some interesting things called nodules. At first this was no cause for concern as nodules in the thyroid are reasonably common. However at one scan one of the nodules started to show itself as being rather large.  This was a bit of a worry as it could be a precursor to cancer or it turning 'hot' and hence my sluggish thyroid may swing to being overactive by being powered by one of these rampant nodules.  Now my semi regular thyroid scans, turned more regular and were accompanied with find needle biopsy.  One doctor sent me off to a specialist about it and I obediently went along thinking that I was seeing an endocrinologist.  It was with some shock that I realised he was a thyroid surgeon and he was busily explaining to me how he intended to cut out my entire thyroid gland.  He explained the operation, the risks, and the life time dependence I would now have upon synthetic thyroid hormones.  This left me a little shocked to say the least.

 

I went back to my doctor and asked for a second opinion and this time got to see an endocrinologist who agreed to a more conservative regime of regular thyroid scans, biopsies and blood tests. That I felt I could life with much better than having my throat cut and risking loss of my voice and damage to my parathyroid glands.

 

I was starting to feel like a bit of a freak with these weirdo medical conditions in a body, that by most accounts actually felt quite healthy.  I was later to find out about what feeling unhealthy was like, when at the end of 2007 both my mind and my body cracked up completely on me.

 

As I have previously been blogging, we had an amazing family trip, camping our way around Australia. During the trip I fell pregnant with baby number four. Unfortunately not terribly far into the pregnancy I miscarried and managed to time it to coincide very closely with my father becoming incredibly sick and subsequently dying.  Not two weeks after suffering the trauma of losing my baby I was on a plane flying away from my loving family and support network to go and attend Dad's funeral. On top of the funeral was the realisation that mum was pretty sick with what was either depression, or dementia or both, and there was a nasty family feud brewing between the siblings about what happened during dad's last weeks of life and how mum's care should proceed from here.  This was pretty serious stuff.  I stayed in Canberra for a week helping with funeral arrangements, burying dad, and then I flew back to re join my family in Darwin and continue our Australian trip, while trying to pretend that everything was ok.

 

The end part of the trip was to put us in Canberra where I stayed with the kids in mum's house while Steve returned to Coffs to go to work.  Somewhere along the line I had picked up a nasty gastric bug that was slowly getting itself established in my gut.  Sibling relations were pretty low with some pretty intense moments, mum was slowly losing her marbles and I think I was starting to lose mine too. Just before leaving Canberra and heading for home I experienced a prolonged dizzy spell that frightened the hell out of me. Particularly as I have a tendency to blood clots, my first thought was stroke.  This was like the straw that broke the camel's back.  I still had to hire a car and drive me and the three kids all the way back to Coffs while suddenly having lost my grip on my calm state of mind.

 

I made it back to Coffs, but here started some months of extreme anxiety and total discomfort with being inside my own skin.  It was absolutely terrible.  To feel so horrible and not know what was wrong or how to fix it.  I went to various health practitioners looking for help, doctors, naturopaths, alternative health people.  I was running around looking for help from where ever I could find it.  Nothing helped.  Finally, I relented and allowed my doctor to prescribe me antidepressants.  This took quite a shift in my attitude as I never thought I would ever be a candidate for antidepressants. 

Well they were a disaster.  My symptoms worsened, and I didn't think that it was possible to feel any worse than I already did.  I couldn't stop crying and shaking and I was ready to completely crack up.  I rang the doctor and was advised to stop taking them straight away.  The symptoms improved.  One of the major symptoms that I was suffering was a severe case of diarrhoea.  I had no appetite, yet anything I did eat was pouring straight through me not even digested.  I started to lose a stack of weight.  As the antidepressants didn't work, I asked the doctor to refer me to a psychologist.  Another treatment option I never thought I'd see myself needing.

 

I went to see the psychologist and I will continue the saga of what happened there in part 3.