GWS ColinJ.. DVT/Pulmonary Embolism

[MartinQ]

Haven't seen the programme yet, but I've a moderate amount of that left in my lungs after the last set of clots and is probably chronic now.

Good excuse for poor hill climbing effort though.

 

[compo]

My ex wife was very prone to clotting, and indeed suffered DVT's in her legs. She was tested and found to have the genetic disorder Leiden Factor 5 which makes her far more liable to clotting. She was (is) on Warfarin for life. Following clotting episodes I would have to inject her daily with heparin for a week or two. The hospital provided the pre loaded syringes so it was easy.

I was wondering if Colin has come across this condition and if he has been tested for it. It seems to be becoming more prevelant.

 

[ColinJ]

My ex wife was very prone to clotting, and indeed suffered DVT's in her legs. She was tested and found to have the genetic disorder Leiden Factor 5 which makes her far more liable to clotting. She was (is) on Warfarin for life. Following clotting episodes I would have to inject her daily with heparin for a week or two. The hospital provided the pre loaded syringes so it was easy.

I was wondering if Colin has come across this condition and if he has been tested for it. It seems to be becoming more prevelant.

I have read about LF V. I have supposedly been tested for it, but never got the results back.

I have read that the NHS is doing fewer such tests now because if you have it and are not clotting, then you might as well avoid the bleeding risks of anti-coagulants. If you are clotting even if you don't have the genetic risks, then you do need the anti-coagulants.

When patients are started on warfarin they need to be 'bridged' with heparin because, paradoxically, for a short transition period warfarin can make you MORE prone to clots. The warfarin clinic monitor the INR of the patient frequently until it is in the therapeutic range and then the heparin can be stopped, and the testing frequency reduced.

Both times when I was in hospital, all of the patients in the wards were given daily shots of heparin as a precaution against clotting due to spending prolonged time in bed.

 

[MartinQ]

My ex wife was very prone to clotting, and found to have the genetic disorder Leiden Factor 5

Factor V Leiden has two forms hetero (inherited from 1 parent) and homo (inherited from both parents). The lift associated with clots (relative risk increase compared to the normal population) associated with hetero is ~5 and with homo ~100, both of which increase somewhat with some birth control. Homo is much rarer but obviously much more dangerous. About 5% of the population are hetero positive and 0.05% homo positive.

After a couple of operations in Sep & Oct, I've had to do the tinzaparin injections a couple more times, although last time I waited 5 hours for the nurses to dispense it at the hospital . Getting quite good at it now, and its certainly less painful than letting someone else do it.

 

[ColinJ]

After a couple of operations in Sep & Oct, I've had to do the tinzaparin injections a couple more times, although last time I waited 5 hours for the nurses to dispense it at the hospital . Getting quite good at it now, and its certainly less painful than letting someone else do it.

I'm a wimp with needles so I used to get the nurse at my local health centre to do it. I only live round the corner so it wasn't much hassle for me and it only took her a minute so it wasn't much hassle for her as long as I made appointments in advance.

 

[MartinQ]

I'm a wimp with needles so I used to get the nurse at my local health centre to do it. I only live round the corner so it wasn't much hassle for me and it only took her a minute so it wasn't much hassle for her as long as I made appointments in advance.

I'd really recommend just doing them yourself. With a bit of practice, it hurts less and smaller bruises and quicker. Must admit though, I was the same as you when starting warfarin a couple of years ago, couldn't face doing them myself. Having said that, your nurse may be nicer than the ones round here ... why does the image of Nurse Gladys Emmanuel come to mind?

 

[ColinJ]

I'd really recommend just doing them yourself. With a bit of practice, it hurts less and smaller bruises and quicker. Must admit though, I was the same as you when starting warfarin a couple of years ago, couldn't face doing them myself. Having said that, your nurse may be nicer than the ones round here ... why does the image of Nurse Gladys Emmanuel come to mind?

I had to look up who she was! Open All Hours was one of those shows that I never got round to watching ...

The nurses here were pretty good. The heparin shot normally just felt like a wasp sting i.e. I barely felt the needle go in, but the drug itself stung like wasp venom. On one occasion it was really painful. The nurse reckoned she must have precisely hit a nerve ending, and that was just pot luck!

 

[ColinJ]

End of year health report!

I have made a lot of progress this year. My breathing has improved a lot, and my heart rhythm has settled nicely. I am ok up to about 85% effort, though I can still feel the strain if I really push hard. With luck, my top-end 'oomph' will start to come back in 2015 but if this is as good as it gets, then at least it is better than I thought it was going to get!

I had a relapse when I caught a cold in June - breathlessness came back for a few months, but I got over that.

Another cold over Christmas made me feel very rough but ... I just felt rough as in 'poorly' not rough as in 'oh crap - clotting'! It's much better feeling ill without the suspicion that something more sinister is going on in the background.

My DVT-ravaged left leg has improved, though it still isn't great if I sit at tables or desks for too long. I think I will just have to keep wearing compression socks on that leg and elevate the leg when I can. It is fine when cycling and walking because exercise keeps the blood flowing. It is blood pooling when the leg is stationary that causes problems.

I have done some great rides this year, included a fabulously well-supported 'comeback' ride at the end of March.

I am slimmer than I have been for years and that has improved my climbing ability significantly.

I am enjoying my cycling more than I did before I got ill.

Onwards, and upwards, eh?

 

[Ganymede]

End of year health report!

I have made a lot of progress this year. My breathing has improved a lot, and my heart rhythm has settled nicely. I am ok up to about 85% effort, though I can still feel the strain if I really push hard. With luck, my top-end 'oomph' will start to come back in 2015 but if this is as good as it gets, then at least it is better than I thought it was going to get!

I had a relapse when I caught a cold in June - breathlessness came back for a few months, but I got over that.

Another cold over Christmas made me feel very rough but ... I just felt rough as in 'poorly' not rough as in 'oh crap - clotting'! It's much better feeling ill without the suspicion that something more sinister is going on in the background.

My DVT-ravaged left leg has improved, though it still isn't great if I sit at tables or desks for too long. I think I will just have to keep wearing compression socks on that leg and elevate the leg when I can. It is fine when cycling and walking because exercise keeps the blood flowing. It is blood pooling when the leg is stationary that causes problems.

I have done some great rides this year, included a fabulously well-supported 'comeback' ride at the end of March.

I am slimmer than I have been for years and that has improved my climbing ability significantly.

I am enjoying my cycling more than I did before I got ill.

Onwards, and upwards, eh?

Here's to your top-end oomph!

 

[ColinJ]

Here's to your top-end oomph!

Yes please!

It could be that my limitations are now more due to lack of fitness than poor health, but I reckon I would have been fitter than this after 3,619 miles of hilly cycling in the past. I can ride quite long distances now (up to 100 miles or so) but I am only able to ride at a very modest pace overall. (10-11 mph on hilly routes, including stops.)

The exercise IS doing me good - I just get a bit impatient and want the progress to be quicker. I will try to be a bit more focussed on getting fit in 2015. 2014 was a transition year and laid a good foundation for what it is to come. 2 years ago I was still limited in how far I could walk and I was months away from getting back on my bike. 1 year ago I was getting my lungs working again after my second bout of clotting.

 

[Orville]

Thanks. The new drugs are certainly looking promising but I think I will stick on warfarin for now. I agree with the second doctor who said that a little caution is no bad thing. I am pretty stable on warfarin so hopefully my bleeding risk is as low as it can be.

Longer term, I would like to switch because I don't like the prospect of a lifelong vitamin K deficiency induced by warfarin. I just want the doctors to have a few more years experience with the new drugs first in case anything horrid turns up!

I was watching Trust Me, I'm a Doctor tonight and they had a report on a new surgical technique for dealing with clots in the lungs. It was the kind of thing that I could not have watched when I was feeling really ill, but I felt up to it this evening. It was amazing to watch, but what they got out of the poor guy's lungs was truly gruesome!

If you can stomach it, it is available on iPlayer for a month - LINK. The clotting item is about 40 minutes in.

I am on one of the newer drugs approved in Canada (Xarelto) and have had very good success with it. The only issue as it relates to cycling is the lack of a counter treatment should you experience an accidental bleed. That is a big issue for me but it is the only drug approved for my occupation.

I have Homozygous LF-V and had post surgery DVT's in one leg and a clot in a corotid artery. Both required a surgical fix but my leg has incompetent vein valves that will always cause pooling of blood. Compression socks and exercise have made the whole ordeal tolerable. Continued success in your recovery. It sounds as though you are doing well.

 

[ColinJ]

Sounds good, Colin

Interestingly I'm now averaging 10-11mph and have put this down to ageing and riding a more comfortable touring bike for most of my miles. The slower speed might just be tempus fugit.........

I would play the age card, only ... one person leaving me trailing behind on rides is a pal who has just turned 61, 2 years older than me!

Admittedly, he has never been overweight and has been in good health for over 35 years. (He had a serious illness in his 20s which frightened him into looking after himself better!)

I am on one of the newer drugs approved in Canada (Xarelto) and have had very good success with it. The only issue as it relates to cycling is the lack of a counter treatment should you experience an accidental bleed. That is a big issue for me but it is the only drug approved for my occupation.

I have Homozygous LF-V and had post surgery DVT's in one leg and a clot in a corotid artery. Both required a surgical fix but my leg has incompetent vein valves that will always cause pooling of blood. Compression socks and exercise have made the whole ordeal tolerable. Continued success in your recovery. It sounds as though you are doing well.

Thanks Orville, and good luck to you!

It won't be too long before the antidotes for the new drugs are on the market. I read that clinical trials are looking good.


Oh, one thing I forgot to mention is that I will be having an appointment with my consultant at the end of January. I am going to ask him if he would send me for a bone density scan. It would help put my mind at rest if I knew my bones were not falling apart due to vitamin K deficiency. It would give a reference point for another test a few years down the line so we could see if my bones were being significantly affected longer-term.

 

[gbb]

Yes please!

It could be that my limitations are now more due to lack of fitness than poor health, but I reckon I would have been fitter than this after 3,619 miles of hilly cycling in the past.

I suspect you're right.
Sometimes I'm surprised how after almost 2 years of limited cycling, I can still do ok, albeit with short stamina. I can push along, but hills deplete me quickly, wind kills me and I just cant do what I used to...but what should I expect ?...I have permanent lung damage and loss of fitness that doesnt come back easily with limited time on the bike and unless I start commuting again, an odd ride here and there isn't going to have any significant effect.
But....you provide inspiration, I read your posts and realise while my condition will always limit me..you've been through a heck of a lot but still retain the will to get out there.
I need to put more effort in and stop wallowing

 

[coffeejo]

You think there's a problem with your fitness? I'm putting weights on your bike for your Whalley ride so I can keep up.

 

[ColinJ]

You think there's a problem with your fitness? I'm putting weights on your bike for your Whalley ride so I can keep up.

The problem is that I ended the year not a lot fitter than I was on that ride at the end of March, despite riding another 3,000 hilly miles in between!

I am fairly convinced that I developed some more clots in June after being laid up with a cold. I went from doing a comfortable 117 mile ride at the end of May, to getting short of breath within 250 yards of starting rides in July. I didn't feel fully recovered until the start of October.