Today I farewelled my haematologist – he’s off overseas for several weeks – but I also farewelled him from managing my condition. First up, I have another beautiful number – 202,000, so I am well and truly back in the land of people with a full complement of thrombocytes in their blood.
Secondly, I’ve finally met the doctor who respects my experience of the way my body works and responds to different chemical stimuli, and who is going to work WITH me, to help me manage my condition in the way that is best for me.
This is the wonderful Dr N D, the GP I’ve waited so long to meet, who treats people with ITP with Traditional Chinese Medicine (TCM) as well as up to the minute western medicine.
The Patient Knows Their Own Body Best
Dr ND hasn’t given me Chinese herbs, as they wouldn't work now I no longer have ITP symptoms of severe bruising and risk of internal bleeding. Instead, she’s helping to wean me off the steroids, much more gently than the haematologist. Apparently my body is just not adjusting to the huge drops on the dose every two weeks - 10 mg at a time - and it takes most of the fortnight to settle to that level, then we do the big drop again. That's why I have such a severe response most days - so severe that some days all I can do is lie on the couch. My poor body is pharmaceutically over-stressed!
So now I’m cutting back much more gradually, by 1mg a fortnight, a week or every few days, depending how I respond. The responsibility is mine to decide when to make the next cut, as “the patient knows their own body best”. I’m keeping a diary of what dose I take and what reaction I have to it, both positive and negative.
At the same time, we’ve split the dose in half, to be taken twice a day instead of one big one. Just that move alone, four days ago, has greatly lessened the morning shakiness and palpitations, replaced now by an overwhelming sleepiness. I still lose up to an hour and a half each morning after my dose, but so much more enjoyably snoozing!
Today I’m down from 15mg to 13mg. I will stay on that for a couple more days, and aim to get down to 10mg in about a week.
The Complex Biochemical Equation of My Body
“What a piece of work is man,” Shakespeare remarked. Had he been a woman over 55, he might have added: ”and what an even greater piece of work is a post-menopausal woman!”
Dr ND took a number of blood samples for tests, not just for a platelet count. She says the thrombocyte count is just one factor, and it's a blunt instrument, so she's looking at what my adrenal gland is doing, what my blood sugar and insulin levels are, my kidney function and levels of chemicals like magnesium, calcium and sodium. We will repeat all these tests once a fortnight, or more frequently if necessary.
Twenty-four hours later she rang me with results. On the plus side, my thrombocyte count was over 150,000 and my blood sugar levels and insulin were normal (so no risk of Type2 diabetes). Cortisol, (the hormone produced by the adrenal gland, which can stop being produced when taking oral steroids) was also OK.
On the minus side, my kidney function was not looking good, my calcium levels were too high, and my blood sodium levels were way, way low. The good doctor said such low levels make the brain fuzzy, sluggish and confused, which would have amplified the nasty response to the steroids. In the worst cases, especially in frail elderly people, seizures may occur, possible coma and even death.
Why was my blood sodium so low? I asked. Well, the medication I’ve been taking for the past 18 months to manage my hypertension, Karvea (irbesartan), leaches sodium from the blood, and in fact, there is a warning about it being contraindicated in cases of sodium depletion.
Like many people on antihypertensive medication, or just being cautious about high blood pressure and possible heart disease, I've cut back severely on salt and salty foods for several years, and even feel a little guilty when enjoying salty treats like olives and hot Hungarian salami. And probably that was a wise precaution before I was prescribed irbesartan.
Goodbye Haematologist, Hello Real Personal Responsibility
When I saw my specialist this morning, I very tactfully discussed these changes with him. He was delightfully patronising, (if you like being patronised by what my more outspokenly feminist friends call a “male chauvinist pig”.) He knows my GP to be painstaking and competent, and after all, “managing steroids is not rocket science”.
When I said that splitting the dose had made such a difference to the intensity of my morning reaction, and that the magnesium supplement had calmed my painful leg cramps – both things I’d complained to him about in previous consultations – his response again was the “rocket science” comment. Yet not once had he suggested any means to me to alleviate what he’d always dismissed as “common side effects”.
So I thanked him very prettily, and he congratulated me on my new number – 202,00 – which he assured me meant that my ITP episode was over (!), and we parted with relief on both sides.
Taking Responsibility isn’t Easy, but it’s the Only Way
I have been so lucky, firstly with a good healthcare system that I can get medical and hospital care paid for out of my taxes, and secondly to find good primary care practitioners (GPs), like the one I’ve had for a few years, and my new ‘angel’, Dr ND.
Nevertheless, it's been up to me to research my condition and try to understand every aspect of it, and then to argue with the relevant doctor until I can take full responsibility for my actions and my health (as far as it’s amenable to my will).
And that, I think is the case for all of us, whatever the health condition we have to deal with. It’s your body – own it!
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