GWS ColinJ.. DVT/Pulmonary Embolism

[ColinJ]

I just got back from my blood test in Halifax. To my great joy, Calderdale and Huddersfield anticoagulation service have now joined the 21st century! Instead of taking a tube of blood out of a vein in my arm every time (which I find unpleasant ) and sending the sample off for a lab test, they now prick a finger, take one drop of blood and test it in less than a minute using a new INR meter - yay!

I told the nurse that I felt like the INR number she was testing would have dropped from 2.4 to maybe 2.0 or a bit lower. It is supposed to be 2.5, but is allowed to be between 2.0 and 3.0. She looked a bit dubious, but I told her that I have become very tuned in to what my body is doing. My legs have been feeling a bit tired and 'clotty' the past week and I have been getting slightly short of breath at times, so that suggested to me that the clots had got slightly worse rather than slightly better. The test result was 1.9, which backed up my suspicions! They will probably make a tiny change to my drug dose to nudge the numbers back up.

 

[trio25]

Wow that was very accurate Colin! At least that means you should know when you need to seek medical attention, so make sure you do!

That also sounds a much better test. When will they next test?

 

[ColinJ]

Wow that was very accurate Colin! At least that means you should know when you need to seek medical attention, so make sure you do!

That also sounds a much better test. When will they next test?

They seem to be happy with about once every 6-8 weeks.

Today's result was about as big a change as I had last time. Some people experience much bigger, and potentially dangerous variations. I make sure that I eat a fairly consistent amount of vitamin K-rich food such as broccoli, spring onions and leafy cabbage, and that allows the required drug dosage to stabilise.

I reckon they will put me back onto last year's dosage when I get the official letter from the clinic tomorrow. I have been taking 6 mg of Warfarin Monday -Saturday, and 7 mg on Sunday. I think they will add an extra mg to the Saturday dose, but I will take it on Wednesdays instead. The people at the clinic try to make the doses easy to remember, but I don't need to because I have individual daily alarms set on my phone, and label them with whatever dose I need on that day. It would be better to spread the bigger doses out to reduce the fluctuations in my INR value.

 

[trio25]

Sounds like you are being well looked after which is good.

I have alarms for drugs on my phone as well, works well for me.

 

[ColinJ]

I have alarms for drugs on my phone as well, works well for me.

My Warfarin dose has been changed to what I expected, so I have reprogrammed the alarms on my phone to remind me. I label the alarms so I read what the dose for the day is when I dismiss the alarm. I have also chosen a different time (17:58 vs 18:00) and alarm tone for the non-standard dose days, so I am reminded before I even pick the phone up, that it is a 7 mg day.

The alarm catches me out most days, so I can safely say that I would be forgetting to take the drugs on a regular basis without the reminder. If I am out when the alarm goes off, I add an hour to it so it will go off again when I get home. It is ok to be a few hours out taking Warfarin, but it is not advisable to double up the next day if a dose has been missed.

I record what I have taken in an official yellow NHS Oral Anticoagulant Therapy record book. I don't really need to because I still have my wits about me, but I suppose the day might come when I start to forget what I have taken, so it is a good habit to stick to! (If I end up like that, I will get one of those compartmented pill dispensers and fill it up once a week.)

 

[trio25]

I label my meds with days of the week on the pack so I can see if I have taken todays.

Although academic at the moment as Ali is in charge of meds so I get given them everyday.

Having a record book makes sense as you are unlikely to remember the odd time you forget when you next see your doctor.

 

[ColinJ]

Time for another update now that I am getting a clearer picture of where my post-DVT/PE recovery is going ...

Somebody wrote to me last week to ask if I had died. The answer (unless I am suffering from the same problem as Bruce Willis's character in The Sixth Sense) is ... no - I am still hanging on!

The good news is that I am slowly recovering. I have already done a lumpy 43 mile bike ride, and have planned a forum ride for the end of March during which I intend to ride either 103 km (64 miles) or 107 miles, depending on what level fitness I have managed to develop by then.

I can now average 4+ mph on a hilly 4 mile walk which I do 2 or 3 times a week. The hill that I climb includes a section at 20-25% and ascends about 650 ft in total. That is not bad going - many people who have not had the health problems that I've had could not manage that.

I have lost 3.5 stone in weight and 14 inches off my waist. I haven't drunk any alcohol since August 2012. I should be down to my target weight of 12 stone and target waist measurement of 32-33" by the summer.

The bad news is that I suspect that my lungs might not make a full recovery. I can still feel that there is something wrong with my left lung. It is 7 months since I went back on warfarin after my second pulmonary embolism and I still suffer bouts of shortness of breath. My pulse rate still gets elevated sometimes for no apparent reason. I could be wrong about the prognosis though - I have read that some people take 18 - 24 months to regain full lung capacity. Fingers crossed for that, eh? Now that I have lost so much weight, I am gagging to get fit again and really attack the local hills.

My left leg is not great and isn't going to be. The DVT(s) did some permanent damage so I am now suffering from PTS (Post Thrombotic Syndrome). As a result, I cannot sit in a chair for more than about 15 minutes before the leg starts to swell up and go numb, and then I start to get short of breath. I have to either lie down or elevate my leg.

The problem is that the non-return valves in the veins are damaged by the DVT(s) so blood pools in the lower-leg. There isn't any effective way to repair the damaged veins. I am ok while I keep moving because the action of the muscles working pumps the blood upwards.

I'm not keen on compression stockings, and the latest research failed to find any statistically significant benefit in wearing them. The current advice seems to be "wear them if you want to"!

I have read about a device called a Venowave that looks promising and I am going to have a word with my GP about it. It is a small battery-operated device that straps onto the back of the calf muscle. The machine creates a rhythmic squeezing action to push the blood upwards. The catch is the relatively high cost - £275. I am going to see if the NHS will prescribe one for me. Properly fitted compression stockings are themselves quite expensive and need replacing several times a year, so this looks like a viable alternative for the NHS to provide, but if my local practice will not help I will have to borrow the money and buy one for myself.

I'll let you know what happens with the Venowave in case any other DVT sufferers stumble across this thread in the future. (The devices can also be used for DVT-prevention, and in post-exercise recuperation.)

 

[The Jogger]

Good to see life is heading in the direction of near normal, weight loss and exercise. I hope the nhs supply the Venowave.

 

[MartinQ]

Time for another update now that I am getting a clearer picture of where my post-DVT/PE recovery is going ...

Hi Colin, Getting your excuses in early before your Back from the Dead ride?
Good update though. I'd read about the research saying stockings don't necessarily help. I had the first full scan of my leg in October, about a year after the original clots, and its amazing how knackered your veins are (the guy doing the scan just remarked that that is normal). Luckily though, I've not had too many problems with my legs (lungs and heart are a different matter though - your snake oil didn't help though, thought of asking for my 99p back).
Off for a biopsy on Friday in a sensitive region on warfarin

 

[ColinJ]

Hi Colin, Getting your excuses in early before your Back from the Dead ride?
Good update though. I'd read about the research saying stockings don't necessarily help. I had the first full scan of my leg in October, about a year after the original clots, and its amazing how knackered your veins are (the guy doing the scan just remarked that that is normal). Luckily though, I've not had too many problems with my legs (lungs and heart are a different matter though - your snake oil didn't help though, thought of asking for my 99p back).
Off for a biopsy on Friday in a sensitive region on warfarin

I hope I will not need any excuses on Mar 29th, but no harm in practising, just in case!

I was never offered a follow-up leg scan, probably because there is nothing that can be done to fix the damage. It would be sensible for people coming off anticoagulation though, so any future clot formation could be spotted.

I read that lungs do tend to recover pretty well in a lot of cases, but I am just frustrated with how slow the process can be! It feels like I have been ill for 19 months, but it is really only 7 months since the second PE.

I don't like the sound of that biopsy. Good luck with that and your future health!

I have a bad tooth that needs pulling, so I will be asking the doctor about that when I see her. I think I should be ok because it feels like the remains of it should be easy to get out. It is natural to worry about blood loss on warfarin though!

 

[Justiffa]

Time for another update now that I am getting a clearer picture of where my post-DVT/PE recovery is going ...

Somebody wrote to me last week to ask if I had died. The answer (unless I am suffering from the same problem as Bruce Willis's character in The Sixth Sense) is ... no - I am still hanging on!

The good news is that I am slowly recovering. I have already done a lumpy 43 mile bike ride, and have planned a forum ride for the end of March during which I intend to ride either 103 km (64 miles) or 107 miles, depending on what level fitness I have managed to develop by then.

I can now average 4+ mph on a hilly 4 mile walk which I do 2 or 3 times a week. The hill that I climb includes a section at 20-25% and ascends about 650 ft in total. That is not bad going - many people who have not had the health problems that I've had could not manage that.

I have lost 3.5 stone in weight and 14 inches off my waist. I haven't drunk any alcohol since August 2012. I should be down to my target weight of 12 stone and target waist measurement of 32-33" by the summer.

The bad news is that I suspect that my lungs might not make a full recovery. I can still feel that there is something wrong with my left lung. It is 7 months since I went back on warfarin after my second pulmonary embolism and I still suffer bouts of shortness of breath. My pulse rate still gets elevated sometimes for no apparent reason. I could be wrong about the prognosis though - I have read that some people take 18 - 24 months to regain full lung capacity. Fingers crossed for that, eh? Now that I have lost so much weight, I am gagging to get fit again and really attack the local hills.

My left leg is not great and isn't going to be. The DVT(s) did some permanent damage so I am now suffering from PTS (Post Thrombotic Syndrome). As a result, I cannot sit in a chair for more than about 15 minutes before the leg starts to swell up and go numb, and then I start to get short of breath. I have to either lie down or elevate my leg.

The problem is that the non-return valves in the veins are damaged by the DVT(s) so blood pools in the lower-leg. There isn't any effective way to repair the damaged veins. I am ok while I keep moving because the action of the muscles working pumps the blood upwards.

I'm not keen on compression stockings, and the latest research failed to find any statistically significant benefit in wearing them. The current advice seems to be "wear them if you want to"!

I have read about a device called a Venowave that looks promising and I am going to have a word with my GP about it. It is a small battery-operated device that straps onto the back of the calf muscle. The machine creates a rhythmic squeezing action to push the blood upwards. The catch is the relatively high cost - £275. I am going to see if the NHS will prescribe one for me. Properly fitted compression stockings are themselves quite expensive and need replacing several times a year, so this looks like a viable alternative for the NHS to provide, but if my local practice will not help I will have to borrow the money and buy one for myself.

I'll let you know what happens with the Venowave in case any other DVT sufferers stumble across this thread in the future. (The devices can also be used for DVT-prevention, and in post-exercise recuperation.)

Oh dear I didnt realise u've been suffering from something so serious. makes it all the more incredible what u hv been able to manage so far. wishing u all the best in whatever u decide to do collin, and tht happiness good health & good fortune awaits u at every turn

 

[ColinJ]

Oh dear I didnt realise u've been suffering from something so serious. makes it all the more incredible what u hv been able to manage so far. wishing u all the best in whatever u decide to do collin, and tht happiness good health & good fortune awaits u at every turn

Thanks!

It was a terrible blow when it first happened in July 2012, but I seemed to recover and was taken off warfarin in March 2013. By June 2013 I was getting very ill again and am now on anticoagulants for life. (Well, the doctor did say it was up to me if I wanted to come off them in the future, but I am not stupid - I'm not risking going drug-free again! )

 

[Glow worm]

Wishing you all the best Colin and hope the recovery continues. You seem like a very strong bloke with no end of mates both real and 'virtual' on here - I'm sure that's a good combination to help get you through.

 

[Justiffa]

Thanks!

It was a terrible blow when it first happened in July 2012, but I seemed to recover and was taken off warfarin in March 2013. By June 2013 I was getting very ill again and am now on anticoagulants for life. (Well, the doctor did say it was up to me if I wanted to come off them in the future, but I am not stupid - I'm not risking going drug-free again! )

Yup life's to be lived to the fullest but then we dont hv to take unnecessary chances… anyhoo do tk care wontcha

 

[MartinQ]

I hope I will not need any excuses on Mar 29th, but no harm in practising, just in case!

I read that lungs do tend to recover pretty well in a lot of cases, but I am just frustrated with how slow the process can be! It feels like I have been ill for 19 months, but it is really only 7 months since the second PE.

I'm already making my list of excuses .. looking forward to the ride though.

Agree about it being frustrating for the length of time for your lungs to sort themselves out. Commuting and the odd weekend ride seems to help a bit, but it seems like I'm constantly trying to tell my body to sort itself out, but my body doesn't listen. As you say though, it is only 6 months from the recurrence so must be patient