I've already posted most of this elsewhere, but it seems to make sense to bring it all here, onto my "health" blog.
17th February 2015:
Noticed a red lump on my leg at the weekend.
Sore, when prodded, and hard to the touch.
Hmm.
Anyway, saw the doctor this afternoon.
Preliminary diagnosis is ...
not that dramatic, really.
I'm just trying to build up a bit of suspense.
Preliminary diagnosis is Superficial Thrombophlebitis.
Remember the old "rule of thumb"?
The longer the name, the less serious it is :-)
So what is it?
Inflamed minor vein, with probably a blood clot in it.
Know what a DVT is?
A bit like that, but in a small vein near the surface, and a lot smaller, and a lot less serious.
BUT ...
I have an interesting medical history.
5 years ago I had a serious DVT, and serious PE ("slug-like" was how the doctor described it)
Didn't kill me, obviously :-)
But it did get me 6 days in hospital, then I had multiple blood clots in my upper leg a couple of weeks after that and I was off work for 11 1/2 weeks in total.
Some of the veins in my left leg took a beating in the process.
And the "superficial whatever" is in the same leg.
Apparently risk factors include having a previous DVT, and especially my second incident, along with the damaged veins etc. etc.
So it is off the local hospital tomorrow to see a specialist, and probably a scan, too, just to see what is what. Then a blood test in the afternoon, just to see if that is influencing things.
Then ...
... well, it depends on how things come out.
Not what I needed in my training program!
The good news is that if I have what they think I do, I should "keep active".
Music to my ears :-)
With me already signed up to the London 2 Brighton ride (86km) in late June, and intending to do the local Tour De Vale (100km) in early June, with a "double metric century" (200km) attempt later in the summer, I will have to see how this affects my training.
Good job I started training early!
Update: 19th Feb 2015
So I went to the hospital yesterday.
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| Mermaid parked down by the Cancer and Haematology unit at Stoke Mandeville Hospital. |
Saw my local doctor Tuesday (yesterday), and got a referral for the very next day :-)
I love decent healthcare :-)
Anyway, It took me a bit of time to find the right department.
When I got there, they gave me a quick bit of basic testing.
Weight 96kg (dressed)
BP 123/80, pulse 54, blood/oxygen (iirc 99%)
All good stuff.
Then they sent me off to the Ultrasound department for a scan on my leg.
I thought they would be scanning my new "bump", but they scanned my femoral vein (the main "deep" one) instead - down the inside of my thigh, then they switched to round behind my knee.
The results were clear, and yet not clear,
You know how stuff is in medicine.
A VERY apparent multiple partial occlusion (that means the vein is partly blocked by clots in several places). That's the easy bit.
Now for the not so clear bit.
How long had the clots been there?
Clearly my leg was in bad shape back in 2009.
But the follow-up scan one year later showed an "all clear".
So those clots got there between the late Spring of 2010 and now.
Except they shouldn't have, because I have been continuously on anti-coagulants for the entire time, pretty much always staying "in range". Fragmin (a LMW heparin), then warfarin (Coumadin), then a few weeks later it was off warfarin (after extensive further clotting in my thigh) and onto Fragmin again for a while, then back onto warfarin, where I have remained thereafter.
Rat poison for the last five years and I still get clotting :-)
Guess I'm one tough rat :-)
Anyway, back to the plot.
The "ultrasoundist" (if there is such a word - "radiographer" doesn't seem right to me) told me that the clots were probably the reamains of old clots, and nothing to worry about, but the doctor (clinician) was the one who makes the decision.
Nice to be told what is going on!
I remember years back when everything seemed secret, and the doctors were "Gods in White Coats", and they, and only they, were qualified to tell you anything at all. Of course, the actual scanning machine operators, who had seem more scans than most of the doctors, knew exactly what was what, but, being only "operators" not "clinicians", they never used to be able to say anything.
like I said, nice to get a bit of feedback as I am going through the system.
Then back to the DVT clinic where I had started. The nurse in charge there (a lovely lady with a touch of a French accent, and what to me seemed like a French name - and even better a cyclist herself!) took my "bloods", sent them to the in-hospital lab with an "urgent" label on them, and then sorted me out with a suitable doctor, so it was off to "Ambulatory Care" I went.
The nurse in the DVT clinic said she would look after all mys stuff for me, until I got back (pannier, a couple of jackets etc. - hey, it was cold at 6 am when I left for work!).
So on to "Ambulatory Care", where they took my pulse and BP again.
BP up a bit, pulse the same, blood/oxygen the same.
Better to be checked twice than missed out, I suppose.
Then I was offered tea, coffee, or water, and asked if I needed anything for pain.
I don't do pain well, but I didn't have any, other than the soreness of my "lump" when pressed - not enough to need anything to treat it :-)
Lucky me :-)
Some folks have minor stuff that REALLY HURTS - but not me:-)
I'm working on big stuff that doesn't :-)
Anyway, I hung about in Ambulatory care for a bit, waiting for the blood test results.
then I got to see a cute doctor who, as well as going on about my leg, gave me an old-fashioned checkover - stethoscope in hand.
She said it was "unfair" that folks with a modest lifestyle like me (don't smoke, hardly drink, keep fit and active) get sick.
That was the same thing that the French nurse in the DVT clinic said.
As for me, living in a developed country with full state-funded healthcare, I consider my life to be very "fair" indeed. Only takes a moment to think about how someone with the same condition as me in more than half the world can't get (or can't afford) the healthcare I get.
Anyway, noting obvious wrong with me.
Except the lump (which was confirmed as a "superficial whatever" - a small clot in a minor vein), and an anomolous ultrasound result.
So where to now?
The doctor upped my INR target from the "old" level of 2 to 3 to a higher level of 3 to 4.
Big deal - I just have to take a bit more rat poison every evening.
But that's just a temporary measure until further test are done.
There are much more sophisticated treatments than warfarin/Coumadin available, but iirc, they all involve injecting (my belly looked like a dartboard after 6 weeks of Fragmin/LMWH - but at least the extra bit of fat I have there served a purpose!)
Further testing is planned - I have another INR test tomorrow (Friday) to check I am in the new INR range - tbh, I am already in it, because the "bloods" at the hospital showed up an INR of 3.3, as I had overshot the target range. But, of course, that should have made it even harder for the clots to form!
The doctor also suggested a nice "top-to-toe" scanning session and some futher blood tests were being lined up to try and get to the bottom of how my blood is so "clotty".
Best of all, though, the doctor says I can keep cycling!
That's got to be a good result!
Total time about 3 hours 20 minutes, from arriving at the DVT Clinic (and being seen immediately) to the time I walked back to the bike rack to get my bike for the cycle home.
Anyway, here is the relevant section of my "discharge" - the piece of blue paper they gave me on the way out of the hospital:
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| My discharge summary - hope you can read "doctor" handwriting :-) |
However, using the marvel of photo-enhancement, I scanned the discharge summery and pushed up the contrast, and that is what you see above.
It says:
1) Left leg DVT on Warfarin (that shouldn't happen, and that is why I am having further testing!)
2) INR 3.3 (normal for most folks is, obviously 1, but folks on preventative anti-clotting are usually on 2-3. My reading of 3.3 is on the "thin" side, so the clots ought to be even less likely to form - and yet they clearly have!)
3) Previous VTE in 2009 (A VTE is a "doctor" term, and is short for "venous thromboembolism" - it means a DVT and or a PE (pulmonary embolism - a blood clot on the lungs) - I had both in 2009)
The next bit down says:
Weight 96kg
Pt (i.e "patient") presented to DVT Clinic and has confirmed L (i.e. "left") leg DVT - non-occlusive (i.e. the clots are on the sides of the veins, and there is still some blood flow up the vein, This is impertant because if they clot(s) blocked the entire vein, the blood is going to go somewhere ... if it forces its way through it is likely to take a chunk of clot with it to the heart and beyond ... been there, done that (in 2009), I wouldn't recommend it - it causes many deaths a year in the UK, although most folks, like me, survive! - for the PE cases like I had, apparently 1 in 3 folks die. I was one of the other two, and I used to work with another man who also survived, so it was the third, unlucky, person who died.)
Then the "treatment" bit:
- target INR 3-4 (increase the warfarin/Coumadin dose to reduce clotting further - carries an increased risk of bruising etc. etc.
- Haematology OP clinic (referred) (means I get to go to a clinic with blood specialists. It is at the hospital, but I just turn up, and go home afterwards - that is what OP means (Out Patient), as opposed to someone who is staying in the hospital - presumably an "In Patient"!)
- Anticoag. clinic (that means an "anticoagulation clinic" - they task will be to keep my INR levels in my new, higher, target range. Warfarin/Coumadin is a great drug - a few little pills to swallow every evening. But it is very picky about dosage and a lot of things react with it - a bit too much, and you look like a heamophilliac, not quite enough, and nothing happens. the alternative treatments are also very effective,, but tend to involve injections (i.e. Fragmin/Heparin) - been there, done that, and I'd rather have the Warfarin, thanks very much!)
- OP CT CAP (that is the CT scan I mentioned - the "CAP" means "Chest Abdomen Pelvis" - i.e. a "full" torso scan. CAP CT scans carry a risk in themselves - that is a LOT of X-rays, apparently about 4 years worth of "background" radiation in 10 minutes (!), but it is a risk/risk thing. For certain cases, like mine, the risk of the radiation causing cancer (and in some cases it DOES happen!) is less than the risk from a further PE (remember that 33% death rate I mentioned!). Hopefully it will show up clear, but the CT scan is the best way of finding out!)
Update: 21st Feb 2015
I got a letter this morning from the hospital.They have booked me in for a CT scan (it is essential a 3-D X-ray - it is also known as a CAT scan).
I hear tales of woe about folks waiting forever for scans like this.
Mine is in 9 days time ...
Wow.
#ILoveTheNHS
So to recap on the timeline:
Saturday 14th Feb, I notice a lump on my leg.
Tuesday 17th Feb, I see a GP (local doctor) who says I have a "phlebitis", and refers me to the hospital for further testing, and, if necessary, an "expert" opinion.
Wednesday 18th Feb, I see the nurses in the DVT clinic, get an ultrasound scan on my leg, and get referred to the "expert" - in this case an "ambulatory" specialist. I have multiple DVTs in my left leg.
Friday 20th Feb, extra anti-coagulation blood test to accomodate the new results.
Friday 27th Feb, yet another anti-coagulation blood test is lined up
Monday 2nd March - Torso CT scan planned, chest, abdomen and pelvis, just to see if there is anything to see (!)
Then, at a date to be fixed, I am expecting further, more sophisticated, blood tests, and an appointment with a Haematology specialist (may be more than one appointment, depending on what the CT scan throws up).
That's quite a lot of medical attention in a rapid time.
The CT scan will be slightly annoying.
I don't know if you have had one before, but I have.
There is a very odd feeling - sort of a bit warm and sort of a bit itchy and sort of a bit like the ozone you get from being near a large electical device, but somehow it sin;t really any of those things, but some sort of vague in-between feeling.
Anyway, they'll be putting a marker dye in me so my veins show up.
Last time they couldn't find a decent vein in my elbows, so after 3 failed attempts (and three small holes in me!), they decided to inject it into the vein on the back of my hand.
Fine, but, it made my hand swell up a bit for about a month afterwards.
So let's see how this one goes ...
I am so glad that we chose to buy a house near a major hospital !
Our hospital has been in the news a few times for all the wrong reasons in the last few years, but we REALLY like it.
It is where our daughter was born.
It is where I was initially treated for my PE nearly 6 years ago (I was moved to High Wycombe after a few days).
It is where I saw BOTH the specialists (consultants) several times nearly 6 years ago - I had one for "chest" and onother one for "blood".
Anyway, that's it for now.
Let's see how the CT scan goes!
Had the CT scan yesterday.
No results yet.
I'm sure if it was terrible, they would have rung me (they have my mobile 'phone), so I suspect it is sitting in a big (electronic) pile waiting for the radiology expert to carefully look at it to see if there are any small bits that need attention.
It was the same routine as the one I had in June 2009.
I had to drink LOTS of water a few hours before.
For someone that is reasonably hydrated in the first place, the effect is predictable. (I visited the restroom in the hospital twice before the scan, and then again before coming home).
When I got to the hospital, it was more water to drink :-)
They certainly wanted me full of water (apparently, it helps some of the parts of me, like I guess my kidneys and torso "plumbing" show up better).
Then it was lying on the table of the CT machine.
They have a fancy word - Cannula - that means a needle with a socket on one end so they can attach stuff, so they put one of those into a vein in my right elbow.
I can have veins that like to hide in the presence of needles, and last time I was here, they had three goes, then gave up and used the veins in the back of my left hand instead :-(
But this time, on the second attempt, they were successful - so only two holes in me, not four!
Then they hook the cannula (needle) up to an electric drip-feeding pump.
And off we go!
The pump dumps a marker (almost certainly iodine) into my blood as I am being fed into the machine.
A warm feeling moves down the body as the marker spreads.
One gets a funny taste in the mouth.
One has to hold one's breath when the "pictures" are being formed, and keep still, but that is it.
All done, off the bed, and MORE water, I guess they are starting the process of flushing the marker now, so I'll be visiting the restroom again before I leave the hospital.
I get home, and, finally, for the first time in 6 hours, I am allowed a nice cup of tea (which makes me go to the bathroom AGAIN).
You want it visual?
Here is a short information film made in another UK hospital about a CT scan.
Mine was pretty much like that, except I didn't have to wear a hospital gown because I had come outfitted (as my appointment letter told me to) in a tee-shirt and jogging trousers, being careful not to ahve any metal fitting in the area due to be scanned.
Just had to take off my coat.
Quick and easy :-)
Update 17th March 2015:
I have an appointment to see the "expert" - a specialist/consultant in Haematology, at the end of the month (31st March 2015).
Actually, there is a possibility that I will actually see one of his assistants instead, especially if I am fairly "routine".
"Routine" is good!
I don't really want to be "a difficult case" :-)
I'm still getting the local blood checks to see if my new dosage of Coumadin/warfarin is working out - I have another appointment today.
Update 31st March 2015:
Went to the hospital.
Got seen by the Registrar (the "assistant").
While regretting that the appropriate bllod tests for "sticky blood" haven't been carried out (I guess everyone assumed that someone else was doing it), he did give me the results of my CT scan, and a general assessment.
CT scan was clear - so no chest clots, and no underlying problems (like cancer and the like - sometimes associated with blod clots) either.
So a clean bill of health there!
His assessment of the clots that showed up on the ultrasound test are that they are probably old scarring and clot from six years ago (I mention about a month ago that this is what the lady that did the ultrasound suggested).
Probably permanent damage to the walls of my femoral vein.
Not particularly serious.
Not good, but not worse than before :-)
I just need to take steps to control the bllod pooling in my lower leg - where possible I need to sit my my foot up at lunchtimes to let it drain back above the damaged valve in my leg.
I am being kept on the higher dose of anti-coagulants for another 6 weeks "just in case", then back to the "standard" dose.
So it looks like a "false alarm" this time :-)
The doctor seemed suitably impressed with my running, too.
I was, of course, the fittest person in that part of the hospital - the rest were variously old, inactive, or seriously overweight, or a combination of two or more of the above.
The best thing to do after a DVT, is once the "danger" is over, to keep as active as possible - inactivity is bad for the health!
So, for now, I guess that's it.
Back to the routine tedium of anticoagulation and its intermittent blood tests!
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