Tuesday, August 20, 2013

Chronic/Long Term Diseases.

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For the last 3 or 4 months, I've been having a weird sort of smell at the back of my mouth/nose. It's hard to describe - like a mix of blood (though not as metallic) with burnt rubber and it had a very salty sort of tinge to it. Occasionally had weird outbursts of flashes of colours in my side-vision which came with some nausea too - but only once a week or so. I also had a runny nose that kept persisting despite having no real infection present on swabs and in bloods and stuff like that. What was odd though was that I was getting large chunks of solid mucus coming out in the later months. I thought it was normal though and moved on.

I told the doctors about it and they were confused and sorta pushed it aside as if it wasn't a concern. And I guess I can see why - I was going through infections, pain and a transplant at the time so it wasn't on the list of priorities I guess.

So it kept going on for the next few months. And we didn't really touch on it - I occasionally mentioned it to my specialist in our weekly appointments but never really got much of a response. We suspected it was because of a medication I was on (azacitidine) which is like a mini-chemo drug (de-methylating agent - ask if you're interested it's relatively new in post transplants) and they thought the taste changes were because of that. It was showing good results so we persisted with it and blamed the weird symptoms on that, and I thought of it as a good thing in a way - a little price I had to pay for my overall health. I could deal with that.

But then over the last few days, it got worse. I'd had a nosebleed on Friday - common as the azacitidine brings down my blood cell counts - including platelets  which are responsible for stopping bleeding and so I hadn't blown my nose/taken out any large chunks for a few days.

For some reason though, I was getting a stronger smell/taste (I hadn't tasted food properly for 3 months by now by the way), more headaches and more nausea spells and it got to a point where I was having these episodes every 1 or 2 hours.

I read up on it a bit - and had a look into sinus blockages.

It had to be it! I hadn't blown my nose in 4 days and so all that mucus and congestion must have built up - making my symptoms worse. The large chunks of solid chunks of mucus was mucus that was stuck in my cavity for so long that it dried up - and that old, dirty mucus was why I was getting altered  smell/taste too! When I told my doctor next day - he was bemused for a while, and then he said, "Hmm, seems reasonable actually," and bam! 
A bit of nasal irrigation, antibiotics and good old-fashioned steaming and I'm feeling clearer and better than I have in months.

It's only a sinus issue. It only had small side effects. But it was something that made me suffer unnecessarily. The thing is... it could've been 10x worse. And you'll see later that one little assumption I made nearly cost me my LIFE.

What can we learn from this?


Especially with patients with long term problems, never presume signs are irrelevant or inconsequential - even if there are bigger things to worry about. I couldn't taste food properly for months and that was annoying enough but I suffered with random episodes of nausea and those other things as well - especially in the last few days - unnecessarily.

With "chronic" or long term symptoms, like the taste changes and smell I guess in this case - understand that patients will just learn to get along with things. And it's alright when it's something like a sinus problem. But remember - I was immunosuppressed or less able to fight of infections - so it becomes 10x more deadly too if I were to get a worse infection from the clogging (it's usually caused by infections already in the nasal cavity or inflammation there by the way). 

But if it were shortness of breath, or chest pain, or chronic heart or kidney  disease, which so many patients have and live with, then it could be 10x worse if you didn't know or note its progression! Your patient could have a heart attack or stroke or worse!

So ask them about the old symptoms they may have had weeks before

Because there is a good chance they may still be experiencing them - don't assume it's resolved unless the expressly tell you it has and don't think that it's only a little thing that they have to learn to live with when there may be remedies out there - not all have to be drugs - that may help. 

Remember too that sometimes you will forget things! So encourage your patients to tell them EVERYTHING about themselves and especially with long term patients - write everything down so you DO remember - and ask them about problems that you may have think had been resolved (they can come back!) - even if it means flicking back to a records from a few weeks ago - or things they haven't brought up in a while - because they may, like me, and like so many patients with chronic diseases, have learnt to live with it (I bet many of your chronic patients are frustrated too when you don't believe them or take action on symptoms that are destroying their lives). 

And that could just end up being the thing that stops them from living.


Tell the doctors EVERYTHING EVERYTIME. Don't think it's annoying them. If you keep persisting they will realise that it's annoying you and that the doctor should try and intervene somehow, if he can - whether it be giving you more pain medications or blood thinners for your bruising or referring you to a sleep specialist for your insomnia or referring you to a psychiatrist if you're scared of what your future treatment means to you. If they don't believe you, or dismiss anything that's affecting you, sometimes you have to show them (I literally had to video my cramps, and then have some debilitating ones in front of him, after emailing him 10x about them, often using that word, before he acknowledged it.  You know how he described them? Debilitating.). Sometimes you have to plead for it to be treated. It sucks.

Remember - doctors are human. Sometimes they can be dismissive, sometimes crass and crude, but often they just forget

This happened once with one of my medications too - bactrium - a prophylactic (prevention) medication against pneumocystitis after bone marrow transplants. I had been taking it for a while - but through some miscommunication I thought I had to stop it. Apparently he meant another drug though and I was left vulnerable to the dangerous disease. So I stopped taking it for around a month and when I began my azacitidine treatment - I developed a chest infection and was treated by doctors at another hospital in emergency. They wondered why I wasn't on bactrium and only after a bit of digging up did they find out what had happened.

Luckily I didn't have the deadly pneumonia - one that literally kills 1/3 people who get it during transplants! - but something else. But it was a close call that could've been saved if I'd simply asked my doctor to confirm it or checked with him whether I should be recommencing that drug. I hadn't as I'd overlooked it - but others may not because they think it's annoying the doctor or that the doctor's looking after it. I feel that way sometimes too. And the doctor should've been checking my medications every appointment.
Sometimes we both make mistakes! 

So remember - always be open to your doctors and don't be afraid to ask questions.

It's your health. 

It's important.


  1. Don't forget the good old treatment options which may have been passed through generations. You always need to look at things holistically and try holistic approach of treating an ailment.. Eating healthy food, plenty of exercising and positive attitude also goes a long way with medications !!!!

  2. That's true mum. Medications are important but your overall health shouldn't be ignored. Very wise words.

  3. Very inspirational story - soldier on my brother!

  4. You should listen to your elders esp Dad - I told you about these things many many months ago - your delay in getting to it is your pain. well you finally heeded the call.

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  7. nice post keep sharing


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