Recently I ranted on social media about the lockdown and running and fitness in the context of having DVTs, and a couple of people asked sensible questions so I thought I'd write a sensible and neutral-ish description of my DVT issue and how it affects me. This is based on my experience and some consultation with specialists, but there are various aspects that I don't know how they happen, I just know they do happen.
What do I have?
As per doctor's notes: "Extensive Bilateral Deep Vein Thrombosis of the Pelvic and Iliac veins". This means that the main veins returning from my legs are blocked around my groin / pelvis / upper leg area by blood clots (one of these measured on a MRI scan as 1cm x 3cm), and all the returning blood flow is taken up by smaller surrounding collateral veins (more on them later).
Why did it happen?
The root cause, determined after MANY tests when I was hospitalised in summer 2009 when the DVTs occurred, is slower lower limb venous return caused by a Congenital Aplasic Inferior Vena Cava. This means that the main vein in my chest, that returns from my lower body, never developed from birth (it disappears into "thready tissue" and reappears later). Again, the returning blood flow is taken up by collateral veins. The effect is that my lower body venous return has always been slow, and this allowed clots to form in otherwise innocuous circumstances (too much redpoint belaying? too much running? too little deadlifting? No-one knows the trigger, just the "bomb" waiting to go off). CAIVC is a very rare but known cause of DVTs.
Venous return:
The issue now, with stable clots that are unlikely to cause further damage, is simply one of venous return: Blood flows into my legs, gets de-oxygenated by muscle usage, and can't flow back up quickly enough to get re-oxygenated. Thus my legs get very tired from lack of oxygen, my heart gets very tired trying to pump blood around a slow moving system, and my lungs get very tired from trying to re-oxygenate the blood. So lower limb aerobic exercise is a LOT harder and more tiring for me. It's worth noting that I do recover fairly quickly during intra-exercise rests, especially reclined, as the blood has chance to flow back.
The motorway analogy:
The collateral veins are now doing the work around my pelvis AND around my non-IVC. But they're a lot smaller than the main veins (and in the pelvic area, they're mature veins and harder to re-develop). A good analogy: Take the main veins as motorways, with normal motorway traffic. The IVC motorway gets closed from birth, so traffic is quickly re-routed onto an adjacent A road (collateral). This is slower, but it's only just opened and is in open land, so it gets expanded to cope with this sudden new traffic flow - maybe to become a dual carriageway A road, taking a fair bit of traffic, but a 50mph limit and sodding average speed cameras, so it's still slower overall. A few decades later, the Pelvic / Iliac motorway also gets closed, but this time traffic can only be re-routed on an adjacent B road....and this single carriageway B road is in solid, immovable terrain, with little expansion potential. Maybe the verges get trimmed a bit more now it's got a motorway's worth of traffic chugging along it, but it's now really damn slow.
Can it be operated on?
2010's private consultation answer was: No, not justifiably. The clots start as a jelly-like mass, then solidify into scar-like tissue that fuses with the vein wall, so they can't just be "drilled out". It is theoretically possible to operate to do a venous bypass, but this was described as a "life threatening" operation and would only be considered if there were life (or maybe limb) threatening consequences of not operating. Despite the disadvantages, I am a (very?) high functioning DVT patient, so no, no-one would consider any operations.
Treatment?
Remain active, keep legs moving, elevate legs if needed, take anti-coagulants (to prevent further clotting), wear compression stockings (to encourage blood flow from lower legs - this seems a bit strange as they're not that tight, but yes they do work, after a few days exercise without them, I developed a blood blister rash on my calves).
What the issue actually affects:
Primary:
Lower limb aerobic exercise - this is the most noticeable effect, see elsewhere for a rough estimate as to how much. Running and walking uphill (especially with a rucsac) are problematic, as is cycling. I've gone from 45 minute road runs pre-DVTs to 15 minutes - and I now get DOMS from a 15 minute jog if I haven't done one for a while. Walking wise, I have to stop every several minutes on normal inclines, or every few minutes on steeper slopes. A good example: Walking into the Plantation with two small pads and a small sac, I can almost always get to the Plantation boulders okay, but getting to the crag above I'd need a rest mid-way. Or just before lockdown, I managed to walk into Stanage Popular End from the normal parking in one (slow) go, and that was notably good.
Standing up for long periods - generally gives me tired and achey legs with a swelling feel. Logic suggests this isn't good, so if I have to be still it's better to sit or lie.
Quick loss of fitness and mobility from inactivity - this is harder to explain, but it's very prominent. If I'm inactive (i.e. inactive apart from day to day walking, not "inactive" like Dave Mac running up Ben Nevis for his "rest day") for any sustained period of time (days rather than hours), my whole body, especially my legs, "slows down", I find it disproportionately hard to perform any physical activity, and it takes more and more exercise sessions to get moving normally again. I don't know the mechanics of this, I just know it happens, and it didn't before DVTs (and conversely, very regular exercise is a good buffer against this).
Secondary:
Constant weight gain due to difficulty doing conventional CV exercise which is almost always lower-limb based / biased.
Constant weight gain due to difficulty doing conventional CV exercise which is almost always lower-limb based / biased.
Generally requiring more sleep - possibly due to more energy usage daily? Or the need to lie down to allow easier venous return?
What it doesn't affect:
It doesn't seem to affect: Leg strength (I've done numerous weight training PBs since) - climbing-wise this includes rockovers, but also falling off bouldering and cushioning the impact, long duration low level exercise (I can walk on the flat indefinitely), flexibility, walking downhill (no knee issues) nor, as far as I can tell, injury susceptibility. It doesn't affect any functionality of my upper body. It doesn't seem to affect swimming (the lack of gravity against blood flow helps). It affects skiing a bit, but it's partly compensated there by leg strength, and in European resorts I get enough rest on seated lifts. It doesn't affect my capacity to travel or take flights, any issues there are alleviated by anti-coagulants, compression stockings, and regular movements.
A crude guesstimate of aerobic ability / venous return:
I don't know exactly how much/little blood flow return I now have from my lower legs. You could cut my torso / legs across like a tree trunk and work it out from the relative vein diameters. But other than that, I just rely on a running comparison: In 2008 I started running (to combat weight gain due to less climbing due to golfer's elbow). I'd never run before and I still had that niggling (but completely unknown) aplasic IVC slowing things down, so initially I could do 15 minutes or so, and worked up to doing 45 minute road runs - this was in Sheffield which is a lot hillier than Glasgow / Manchester! In 2009 I got the DVTs and in 2010 I started running again from scratch, starting with 10 mins and working up to doing....15 mins....sometimes. Occasionally I can do 20 mins if everything goes perfectly but really 15 mins is my maximum compared to 45 mins previously. So I make that 33% lower limb aerobic fitness (LLAF), maybe that means 33% venous return??
BUT this is 33% of my previous fitness, which was itself hampered by my non-IVC - maybe 75% of a normal persons? That would fit with how I've always relatively struggled with leg fitness exercises, and seems about right compared to my then peers. So it's actually 33% of 75%.....25% of a venously normal person's LLAF. Obviously this is is a very crude estimate. It could be pessimistic because I have an extra 10kg of weight to carry on runs these days, but it's more likely optimistic because I now have 10 years of sporadic running "training" instead of just one, and I've also been doing a lot more lower-limb strengthening exercises than previously, which have had a beneficial effect. Suffice to say it's a LOT less venous return than normal, and so far it's simply not possible to change that.
BUT this is 33% of my previous fitness, which was itself hampered by my non-IVC - maybe 75% of a normal persons? That would fit with how I've always relatively struggled with leg fitness exercises, and seems about right compared to my then peers. So it's actually 33% of 75%.....25% of a venously normal person's LLAF. Obviously this is is a very crude estimate. It could be pessimistic because I have an extra 10kg of weight to carry on runs these days, but it's more likely optimistic because I now have 10 years of sporadic running "training" instead of just one, and I've also been doing a lot more lower-limb strengthening exercises than previously, which have had a beneficial effect. Suffice to say it's a LOT less venous return than normal, and so far it's simply not possible to change that.
The climbing lifestyle: working around the issue:
This is another area where I don't know all the mechanisms nor explanations, I just know the effects. In normal circumstances, I have a fairly consistent climbing lifestyle, with some days / etc out climbing, regular wall sessions, occasional gym sessions and occasional runs. This includes overall: bouldering, sport, trad, easy walking with a sack, harder walking with a sack, moving / scrambling around crags, indoor bouldering, jumping off lots, indoor routes, stamina circuits, a bit of hanging, low rep but heavy weights, core / antagonist work, some gym CV, and short runs.
What I have found, repeatedly and consistently, that a constant, regular level of "mixed" (and climbing days out are usually inherently mixed in themselves) activity has been very beneficial - to the point I have considered it ESSENTIAL in the context of my DVT issue for the last decade - and considerably more beneficial for lower-limb aerobic fitness than actually focusing more on LLAF (using running and up-hill walking as benchmarks). During times where I've been able to climb outside for more consecutive periods, generally I've done less lower-limb aerobic training (and naturally I've often avoided challenging walk-ins), and have found very clear improvements in my LLAF. At other times, I've avoided LLAF for a while and instead done a "heavy" gym session or two, I've then gone for a run fully expecting it to be dire after little running and heavier weights, and it's again been notably better.
What I have found, repeatedly and consistently, that a constant, regular level of "mixed" (and climbing days out are usually inherently mixed in themselves) activity has been very beneficial - to the point I have considered it ESSENTIAL in the context of my DVT issue for the last decade - and considerably more beneficial for lower-limb aerobic fitness than actually focusing more on LLAF (using running and up-hill walking as benchmarks). During times where I've been able to climb outside for more consecutive periods, generally I've done less lower-limb aerobic training (and naturally I've often avoided challenging walk-ins), and have found very clear improvements in my LLAF. At other times, I've avoided LLAF for a while and instead done a "heavy" gym session or two, I've then gone for a run fully expecting it to be dire after little running and heavier weights, and it's again been notably better.
Obviously this is not climbing lifestyle specific - it could be any lifestyle that involved "mixed" activity on a regular basis (surfing? gym bunny? kayaking?). And obviously this is somewhat problematic with situations like lockdown that prevent such a mixed approach.
So that's how living with DVTs functions for me, based on near 11 years of post-DVT experience. It's still an odd blend of functionalities, given that that the issue is "hidden" in a lot of circumstances / movements. The psychology of it is another issue, but in normal circumstances I usually spend 50% of the time ignoring it all, 25% of the time feeling angry and frustrated, and 25% of the time feeling happy and proud about what I've managed to do despite this issue (these percentages do change in relation to other health issues, weight and fitness, though).
So that's how living with DVTs functions for me, based on near 11 years of post-DVT experience. It's still an odd blend of functionalities, given that that the issue is "hidden" in a lot of circumstances / movements. The psychology of it is another issue, but in normal circumstances I usually spend 50% of the time ignoring it all, 25% of the time feeling angry and frustrated, and 25% of the time feeling happy and proud about what I've managed to do despite this issue (these percentages do change in relation to other health issues, weight and fitness, though).
