Posts tagged health

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Health update #11: final diagnosis

If you missed the news at the time: I had a pulmonary embolism back in January of this year that resulted in two months off work feeling like utter crap.

Today was my final (for now, anyway) appointment with my haematology specialist. After being formally diagnosed with a PE in January I spent three months on the blood thinning medication warfarin (often called Coumadin), then I came off the meds so I could have a full blood and genetic screen to look for a whole host of underlying reasons that could have caused the PE in the first place. This process took several months due to a cock-up by the NHS; the nurse who initially did my blood test didn’t draw enough blood for one of the important tests, and this wasn’t noticed until a month later when I had the appointment where I was supposed to get my results.

That’s all done now though. The results are: there are no results. Out of the wide range of things they screened for, only one was slightly abnormal — I have factor V Leiden deficiency on one gene (the other gene in that chromosome is fine, fortunately). In the absence of other factors this doesn’t represent a significant risk of a second (even more serious) PE. There is a risk of that, but there’s also a risk of nasty haemorrhage complications from being on warfarin long-term, so my doctor’s opinion is that I don’t need any regular preventative medication at the moment. This is great news.

There are some downsides, however. When I do something that puts me at further risk — basically, any long plane, train, or car journeys of four hours or longer, or if I have to be admitted into hospital for any reason — I have to manage that risk. I have some supersexytime compression stockings to wear (sigh) and I have to get Danielle to give me low molecular weight heparin injections (so, Clexane, Lovenox, drugs like that) the day before I fly. These injections hurt (double sigh), so that’s something I could have lived without.

Still, though, glass half full and all that: avoiding a long term requirement for warfarin, with all the risks and dietary restrictions and drug interactions it comes with, is great news.

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Health update #10: almost back to normal

A few people have been asking me for updates on my recent pulmonary embolism (see here for previous posts).

I feel a lot better these days. Not 100%, I think, although after you’ve spent a prolonged period ill it’s hard to remember exactly what fit feels like! Once I had my diagnosis and got started with my medication I had a few weeks where I quickly improved and felt better every day. This was followed, however, by a period where I still felt quite ill and didn’t seem to be improving.

This started to become rather tedious and a little worrying, but apparently is quite normal — the medication I am taking only works to prevent new clots forming. The clots already in my system are simply left to break down on their own, which can be a slow process. Fortunately, over the last four weeks or so, I seemed to have another burst of progress and I have felt more and more energetic each day.

I finally returned to work on 14th March, having done only a single day (Jan 4th) in the office since before Christmas. I can no longer remember what I do for a living, and computers have changed in my absence, obsoleting my skills! Seriously though, I have to thank my employer who at all times during this difficult period was amazingly supportive of me and my inability to work. Sincere thanks, guys.

I had a hospital appointment on 9th March, which I thought was for further testing but turned out to merely be a brief checkup and paperwork to formally discharge me from the hospital’s care.

My blood tests to monitor my INR level and tweak my warfarin/coumadin doses are down to every two weeks, which is a welcome relief. Having blood drawn through bruises from blood draws is quite unpleasant. The ongoing diet restrictions of the wafarin are unfortunate but tolerable. I miss spirits most of all; I have a few bottles of good whisky, rum, port, and vodka in the house that are sadly gathering dust.

Nothing further will happen now until I come off my warfarin (also known as coumadin) in August — putting me at risk of further clots, which is fun! At that point I’ll be referred for a full battery of blood tests that will attempt to determine why this happened, which is still a total mystery at this point (as I hadn’t flown anywhere, have no clear family history of clots, am in reasonable shape, don’t smoke, and don’t work in a harsh environment). It’s possible they’ll find nothing, and it’s possible they’ll find a genetic condition of some kind and I’ll be on the warfarin for life.

I’m lucky to be alive, and I know it. My friend Owen wasn’t so lucky last year. It’s clichéd to say so, but something like this really can — hell, really should — change your outlook on life. I hope it helps me take less for granted.

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Health update #9

Great news today, on several fronts:

  1. I had an abdominal ultrasound test which came back clear. This is very good news for reasons I didn’t understand when I had the test: they were checking for tumours that could have caused my pulmonary embolism! I’m glad I didn’t spend the last week worrying about that unpleasant possibility.
  2. For the second day running, my INR reading was above 2.0 (meaning my blood now takes a lot longer to clot than it did before I started my medication). This means I’m now within my “therapeutic range” and can safely rely on the Warfarin to prevent future clots - so I can stop the painful daily Clexane (Lovenox) injections I’ve needed for the last week and a bit. That’s a huge relief.
  3. My anti-coagulation clinic nurse now feels that my INR levels and Warfarin dose have stabilised to the point where I no longer need daily blood draws to monitor my levels - instead we’re moving to tests every 48-72 hours. This has also come as a relief; after a week of having blood drawn ever day, the inside of my elbows are very bruised and the bleeds have become quite painful because of that. It’ll also save me a couple of hours a day in trips to the hospital and waiting for a phlebotamist.

On top of all that, I am feeling somewhat better lately. My body is gradually breaking down the existing blood clots, so my breathlessness and high heart rate are abating. I can now get up and around much as I used to, albeit for shorter periods before I become tired. I’m not up to walking the dogs yet.

Next step will involve future referrals and more tests, starting when I come off the Warfarin dose - three or six months from now (there seems to be some debate about how long I will need to stay on the medication). These will be aimed at working out exactly why this happened; the implication is that the pulmonary embolism is itself a symptom of something deeper - a genetic condition, for example. However, we might push to try and get this done sooner through my GP. I’m not clear how it’s safe for me to come off Warfarin in the future without knowing if a clot can re-occur.

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Current status.

Current status.

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Health update #8

I went to the anti-coagulation clinic yesterday for my induction session, so I had the full ramifications of my current condition explained to me. It’s rather more complex than I had hoped. Here’s how my immediate future looks:

  • I will be getting daily warfarin tablets of variable dose levels for the next week, combined with daily blood tests to monitor my INR levels (a measure of the time taken for my blood to clot). Each day’s dose will be tailored to the test results from the previous day until they settle down to a steady rate.
  • Until I manage two day’s readings of an INR level above 2.0, I need to continue the daily Clexane injections (the ones I keep complaining about). Boo.
  • Hopefully in 7-10 days, they’ll have settled my warfarin doses down (each person responds differently, hence the careful adjustments) and that’ll be me for the next six months.

Warfarin is, however, a drug which interacts with your body in a variety of subtle ways. Many other drugs interfere with it, including most antibiotics and some common over-the-counter stuff like ibuprofen and some cough syrups. I will have to simply avoid all of these. Plus, of course, my blood will be less able to clot, so any minor cut or scrape could potentially be serious if it doesn’t clot on its own.

Diet is a problem too. Changes in the level of my vitamin K intake drives the warfarin activity haywire, so I will need to avoid foods rich in it (including spinach, kale, broccoli, egg yolks, and many more), and eat foods with lesser amounts of it at a steady rate. Alcohol is more of a problem. Many advice sites say you should completely avoid alcohol when taking warfarin; the NHS advises no more than a couple of glasses of wine on any day as great consumption will inhibit the warfarin’s function and put me at risk of a clot forming. Either way, I think I can rule out being drunk anytime soon.

All this will last for six months, after which I’ll be referred to a haematologist to look for underlying conditions I may have that could have caused this. As I am only 32, a non-smoker, and reasonably fit and active, I should in theory be at zero risk of blood clots. This means I might have an underlying genetic condition or other disease at the root of this.

Fun!

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Current status.

Current status.

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Achievement Unlocked: Get A Diagnosis (health update #7)

My CTPA yesterday (I was a real baby about the cannula, incidentally) has clearly shown the presence of pulmonary embolisms — blood clots in my lung.

Which on the one hand is bad news, because it means this was something that could easily have killed me sometime in the past few weeks (“about 15% of all cases of sudden death are attributable to PE”, as Wikipedia notes). Indeed, a PE was what killed my friend Owen a few months back.

But on the other hand, when considered against the unpalatable alternative diagnosis I could have had — including heart problems and unusual drug-resistant strains of pneumonia or pleurisy — a PE is a manageable condition treated by a long-term course of oral warfarin. Taken in that context, this isn’t such bad news and it’s certainly a sincere relief to have a solid diagnosis.

I need to go back to the hospital today for another Clexane (Lovenox to you Americans) jab to tide me over to an appointment tomorrow with the haematology department where they’ll take me through what this means. I’ll stay on the Clexane for a few days (groan; they really hurt) until the Warfarin tablets can take over. I’ll also need a programme of regular blood tests to monitor my progress. They’re also going to do an ultrasound of my legs to check the blood vessels out there (PEs usually start as deep vein thrombosis clots in the legs that travel to the lungs).

I’m not sure at the moment what recovery time is like, although Danielle and I have noticed that I am somewhat less breathless over the last few days. This will be because the Clexane is preventing the existing clots from growing, and natural processes in my body are slowly reducing them in size. I’ll know more after my appointment tomorrow.

Thanks to everyone who has sent well-wishes, via Twitter, Facebook, this blog, email, SMSs, etc. Thanks to my friends Richard and Rhiannon, Toby and Lucy, and Scott and Ali, who all immediately offered to do anything they could to help us out — lifts to hospitals, for example. And most of all, thanks to Danielle for looking after me (and also calling the PE diagnosis really early on!)

And thanks to Clexane for quite possibly saving my life.

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Current Status

Not a fan of the needles and this IV catheter itches like the dickens.

Current Status

Not a fan of the needles and this IV catheter itches like the dickens.

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Health update #6

Had a call from the hospital this morning; I have a CT scan booked for next Monday, which will hopefully either find a blood clot in the lung or rule that out as a diagnosis. Next steps beyond that depend on what that test finds; if it’s a clot, it’ll probably be oral warfarin for six months, and might complicate the plans Danielle and I had to travel to Europe a few times this year.

If it’s not a clot, it’ll be more CT scans, looked at the lining of my lungs (for something like atypical pneumonia or pluracy — but all my doctors keep shaking their heads and saying “you just look too well for that to be it”) or the cardio unit to look for heart troubles like HCM. In the meantime, I’ll be getting daily jabs of enoxaparin sodium (brand name Lovenox in the US and Clexane in the UK) to guard against a blood clot, well, killing me. Cheery stuff! But all under control at the moment, except for my child-like hatred of hurty needle pain.

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Diagnosis: Murder

Not really, but it sounds snappier than Diagnosis: We Still Don’t Know But You Can Go Home Now. I spent nearly six hours in the Emergency Admissions Unit of Nevill Hall hospital, where the following facts where gleaned:

  • an electro cardiogram was clear, with no heart rhythm problems
  • my blood test results were clear, with no interesting numbers except…
  • I had a high d-dimer result, which is a test that indicates I might have a blood clot somewhere (but a test with false positives, so only might)
  • a second blood test for blood gases (wrist injections hurt!) showed O2 levels in my blood that were low, but not oh-my-god low (95%)

On the basis of the blood gas being not so bad, the doctor was happy to discharge me, after giving me an enoxaparin shot to thin my blood in case I do have a clot. I have a few more of those to be going on with, and Danielle is going to enjoy prodding me with needles I’m sure.

Next stage is an upper-body CT scan to look for signs of blood clots, then after that it depends on what that finds. Probably more scans, concentrating on either my lungs or heart. But for now, I’m just happy to be home.

51 Notes

More health stuff

I’m being admitted to hospital tonight, for observation and further tests.

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Health update

My blood tests yesterday were all clear and my chest x-ray didn’t reveal any changes in heart size or stuff like that since my last one in mid-2008. Which on the one hand is good news, but on the other still doesn’t answer the what-is-wrong-with-me question. My GP has contacted a cardiologist directly, rather than via the usual admission procedure, to see if he’ll accept me for further tests immediately. If nothing comes of that today, tomorrow I will have to consider an “acute admission” into a cardiology unit — if I leave it until the weekend, I risk not seeing a senior consultant until Monday, and outside of an emergency the junior consultants working on the weekend will only really repeat the basic tests I have had carried out so far.

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Health update

Thanks for the well-wishes, folks. Not feeling any better today unfortunately, despite Danielle’s world-class caring for me (seriously, earlier she even took my shoes off for me because bending down was difficult!)

Whilst wearing a pulseox meter, a two-minute walk around the car part at a moderate pace had my blood-oxygen level down to 88% and my heart going at 163bpm. My GP took blood for a number of tests and I’ve had a chest x-ray to compare with one I had in 2008, specifically to look for the possibility of hypertrophic cardiomyopathy and other heart conditions. Test results come tomorrow; I’ll keep you all updated.

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Bloody illnesses

Last Tuesday I went to the doctor’s with a dry, hacking cough I’d had for a couple of weeks and get every so often. They started to chase a diagnosis of asthma. I did peak flow readings, but they were all super high, suggesting no asthma; plus Ventolin didn’t help at all. Over the weekend, I started getting breathless with a 100+ bpm heart when doing anything physical at all - even walking up stairs. I’m also fatigued and achey all the time and I still have the cough.

At a doctor’s appointment today, she was a hair’s breadth away from sending me to hospital for observation for the breathlessness and high heart rate I am suffering from, following an ECG (which was clear) and Pulseox test she didn’t like the look of. As it was, I got a strong dose of antibiotics in case it’s a bacterial infection, and I have to go back for more tests tomorrow. Next most likely diagnosis is a viral infection; then obscure-ish variants of pneumonia etc, and some way out on the probability curve after that is a blood clot on the lung. I’m statistically at a very low risk of that, but I’m a bit alert to the possibility because of recent events.

So, umm, yeah.

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