medical dilemmas part 3

By the end of 2007 I was a medical mess both bodily and mentally and the medical profession didn't know what to do with me.  After investigating all the usual things that could or should be wrong with me given my crazy medical history, I was sent off to a psychologist to see if it really was something related to my mind.

I related my terrible sequence of events to the psychologist: miscarriage, death of father, adjusting back into 'normal' life after having travelled Australia, sibling fighting, mum's condition, the dizzy spell and my fears of stroke...... It all sounded like I had stacked up enough mental stresses to qualify as a mental patient.  Then I described the extreme nature of my diarrhoea.  Yes stress and anxiety can cause some diarrhoea but not to the extent that I was experiencing.  This aspect of my health was definitely medical.  So she sent me back to the doctor with the recommendation that I be tested for gut parasites.

This was getting close to Christmas time and the last thing I felt like was having the usual Christmas eating fest. As it turned out I was barely capable of it anyway.  The only thing worse than having a terrible gut bug is the treatment for it.  The doctor immediately tested bloods and stools and prescribed me the medication for giardia.  I took the course, which amounted to just a couple of days medication.  I felt awful at first as the antibiotics took effect, but I did notice a slight improvement in my anxiety levels.

Then the results of the stool tests came back showing that I did indeed have a nasty gut bug.  Blastocystis Hominus.  Normally a fairly benign bug but presumably in me it had gotten all out of proportion in my gut and was wreaking havoc.  I was prescribed more antibiotics, a stronger dose and this time a ten day course, as this particular bug was a whole lot harder to kill.

I barely made it to the end of the course as the medication made me feel so sick.  This little bugger of a parasite was determined to hang in there.  Mentally, however I was starting to feel better.  Still, though, I was not all together there. So I consulted doctor google and looked up if anyone else had battled this parasite. One site spoke about needing a cocktail of about 3 different antibiotics taken simultaneously to kill it.  I got myself an appointment with a paediatrician who had a special interest in gut parasites and asked him for his treatment plan also.  It consisted of a cocktail of 3 antibiotics, slightly different to the three that I had researched on the net.  Armed with this information I went back to my doctor and asked for another prescription of antibiotics more resembling what I had researched.  I was definitely feeling better, but still did not feel like I was completely on top of my bowels yet.  So I started this new regime, another 10 day course that made me again feel incredibly sick.  What a way to see in a new year, taking cocktails of antibiotics.

I had improved to a point, but there were still moments of having to manage anxiety, some days it felt like it took an enormous mental effort to stay on an even keel.  The gut was ok, but not fantastic.  2008 saw me managing both gut and mental health trying various things like probiotics, garlic and Echinacea, and olive leaf extract to try and heal my gut from the bug or the sustained assault from the antibiotics. Also meditating, drinking camomile tea and yoga to try and heal my mind.

The photo shows me in 2008, thinner and seemly happy, but underneath I was desperately trying to hold it all together.  Finally after sheer exhaustion from trying so hard everyday to feel normal I asked the doctor to again try and prescribe (a different) antidepressant for me.  I just needed a break from myself.  I'll blog about the antidepressant journey another time.

Apart from putting on a stack of weight the antidepressants smoothed out my anxiety, and other emotions.  After Steve telling me one day that I never smile anymore, I decided to ask the doctor to let me come off the medication. As I slowly decreased the dose, my world brightened step by step, like the sun coming out from behind a cloud, I started to feel again.  It was joyous. I was so focused on not being anxious anymore, I had forgotten what it was like to feel the other happier emotions.  As they flooded back, the anxiety didn't!  My gut was healed and my mind was healed, I was finally well again after a couple of years of utter struggle.  Now I just had to deal with the weight gain caused by the antidepressants.  That's a story in itself for another time. The photo opposite shows how fat I got while on antidepressants.


Just when I thought that I had my bowel problems sorted, I found myself referred for a colonoscopy after passing a bit of blood one morning.  The colonoscopy came back clear, but did pick up on some polyps.  More weird things growing in body.  I wonder why I have a tendency to grow things that are surplus to requirements.  I guess we all need a hobby.  The problem with growing polyps is that then becomes another 'thing' that needs keeping an eye on.
Not long after I found myself back at an endocrinologist.  My hair started to thin and fall out in clumps.  I was worried that again I had invented some strange disease for myself, as if I didn't already have enough.  Not being a fan of being on medication though I wasn't keen to take anything to treat it.  The endocrinologist, talked a whole lot, listened very little, and sent me away with few solutions and a renewed diagnosis of PCOS. She declared that given my age, I was unlikely to fall pregnant and indeed if I did want another baby it would likely involve fertility treatment. Well that was a challenge that couldn't go unanswered and six months later, probably because I thought it was relatively safe from falling pregnant, I found myself with child. One good thing, though, the pregnancy fixed the problem of my thinning hair.
The final chapter in this story is that I fell pregnant with our fourth child, baby number five.  I was 42, so if 32 was considered geriatric by the medical profession, I wondered how they felt about 42.  This time my DVT history reared its ugly head again and demanded managing.  After my eight week blood tests I started to feel a suspicious pain in my arm where they had drawn the blood. I thought that it felt like a blood clot.  The pain grew as the clot grew.  Then one night a few days later I developed a pain in my chest.  Thinking that it might be a heart attack I called 000.  I was taken to hospital and put into emergency for some tests. An ultrasound revealed that I had indeed developed a clot extending from elbow to shoulder.  It was inconclusive about whether a clot had lodged in my lung aka pulmonary embolism.  The heart attack had been ruled out.  I had all the symptoms of a PE, the medical history, the smoking gun in the clot in my arm.  Now it just needed confirming by way of tests.  Unfortunately as the ultrasound was inconclusive I had to have a more extreme test, involving radiation and radioactive dyes.  This totally freaked me out.  Having already lost one baby, I knew the pain it caused and the last thing I wanted to do was risk this one.  I was already so scared about making it into the safe second trimester without adding this complication.

We were convinced by our doctor that to do nothing was riskier than to do the test, so I duly submitted. This test came back inconclusive as well.  I was not about to submit to anymore tests.  For my mind with my symptoms and medical history I was 90% sure I had the beginnings of a PE.  It just wasn't big enough to show up on their diagnostic tools.  being hyper aware of my clotting tendency and keen to avoid excessive amounts of pain I tend to act early on these symptoms.  Most people would present to hospital with further progressed disease than I would.

So no diagnosis, no medication.  Medication was always going to be problematic anyway, given my allergic reaction to heparin, and being pregnant, warfarin was out of the question. Oh well, I had been here before.  Self administered Aspirin.  I took a few full doses over the ensuing days and reduced the pain in my chest.  The clot in my arm however was harder to shift. It took on a life of its own and started to extend down to my wrist.  The pain was intense.  Then if that was not bad enough, the other arm started to clot up too. The clot in that one started at my forearm where the catheter had been put in during my hospital stay. There I was clotted in both arms from wrist to shoulder and in grave pain.  I took a few doses of aspirin and gradually the pain and clots receded.

Again I was referred to a specialist who did not endorse my aspirin taking, but took an intellectual interest in my condition.  He told me in all his practise he had never seen a homozygous factor V Lieden patient before.  Yet statistically he reckoned that he should see us all the time, given our increased tendency to clot, compared to the regular population.  He told me that he went to a conference with other haematologists and asked them too if they had ever seen a homozygous Factor V Leiden patient.  All answered in the negative.  He delightedly told them that he had one that he was treating now.  How nice to be a medical oddity.
He started to speculate as to why we were so rare. One thought was that it doesn't really increase our rate of clotting as much as one would think.  My experiences with clots would tend to discount that hypothesis. And just the fact that we exist should have us showing up at hospital with clots at least as often as heterozygous factor V patients.  His second hypothesis was that maybe homozygous don't survive the womb.  So there are actually not that many of us out there.  How nice to be told that I shouldn't actually exist.  I was feeling mightily healthy for someone who shouldn't have made it into this world....... Surely there must be others of us out there......

I survived the remainder of the pregnancy with no more clots.  The birth was wonderful and we now have a gorgeous baby girl for our trouble.  Ah for a life free of medical dilemmas.

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.