Current status: earlier today edition. Sun, sea, Kindle. Didn’t suck.
Yesterday was my TUAW birthday!
A personal website written by Richard Gaywood.
I write about Apple at TUAW, technology and science at Action at a Distance, and about food at Objection: Salad!. I'm on Twitter too: @penllawen. I put pictures on flickr and Instagram.
Yesterday, I made a bacon and mushroom frittata for breakfast and paprika chicken with pasta for dinner. Today was bacon sandwiches on fresh-baked bread for breakfast and roast chicken with mashed potato and gravy for dinner.
In that time, I’ve also put 2.5 kg of beef brisket into brine to make salt beef; made 1.25 litres of bourbon BBQ sauce; and made 6 portions of tomato-butter pasta sauce. The former is for a visit from some of Danielle’s friends from America in a few weeks; the pasta and BBQ sauces were for a care package for my friend Toby, who is going in for knee surgery tomorrow.
I’m bloody tired now! Thankfully, Danielle helped with all this (whilst also making saltine chocolate toffees, which were also partly for Toby.)
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.
Danielle found the hotel and this evening I have:
Phew. And I still have travel insurance to figure out, which is a barrel of fun because of my pulmonary embolism.
Great news today, on several fronts:
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.
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:
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.
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.
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.
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:
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.
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.