GWS ColinJ.. DVT/Pulmonary Embolism

[ColinJ]

GWS Colin, all the best

Thanks.

I am making rapid progress compared to last year because I got to A&E much quicker this time.

If we carry on getting these nice sunny evenings, I might go for some gentle rides up and down the valley road once the traffic has died down.

 

[bicyclos]

If we carry on getting these nice sunny evenings, I might go for some gentle rides up and down the valley road

The weather looks promising for the next week or so......looks like you will be clocking the miles Nice to hear that you are making progress this time and hope things work out more comfortably.

Regards

 

[coffeejo]

Just on the topic of the long-term effects of medication ... a friend of mine has got complex mental health needs and has been on a very high dose of lithium for some time and as a consequence, one of her kidneys is down to 59% functionality. She's naturally extremely concerned about this. The medical perspective? No guarantees or predictions about the future but without that dose, it's highly unlikely that she would still be alive today. Doesn't help her current situation but that's the context.

 

[ColinJ]

Just on the topic of the long-term effects of medication ... a friend of mine has got complex mental health needs and has been on a very high dose of lithium for some time and as a consequence, one of her kidneys is down to 59% functionality. She's naturally extremely concerned about this. The medical perspective? No guarantees or predictions about the future but without that dose, it's highly unlikely that she would still be alive today. Doesn't help her current situation but that's the context.

If it is a straight choice between being dead now, or perhaps having serious problems later, then obviously 'live to fight another day' is the way to go ... That's what I am doing - I am taking the drugs to allow my body time to deal with the clots that I have inside me, but at some point in the future I want to examine alternatives.

I know damn well that I can come up with a better strategy than what I was offered in March which was "Come off the medication. We will assume you are okay (but we will not test to see if you are). If we are wrong then you will get ill again but hopefully you won't die before we get you back on the drugs", or words to that effect!

Incidentally, it is a year ago today that I collapsed after a post-last-TdF-stage bike ride. It is hard to believe that I have been ill for a year apart from 2 months after coming off Warfarin when I really believed that I might be making a full recovery. I've tried to be a patient patient, but this is starting to feel like a damn slow process ...

I'll be seeing my consultant again in about 3 weeks time. He should have the results of some blood tests by then, and has also requested urine tests. Maybe something will show up and give a clue as to what is going on. Hopefully, something non-sinister and curable!

Meanwhile, I'll keep strolling about, and doing little bike rides to try and build my strength back up. It's times like this that I wish I lived somewhere flat!

 

[ColinJ]

It is a bit morbid, but as part of my ongoing mission to rise awareness of DVT/PE, I have decided to post in this thread every time that I hear about somebody famous suffering from the condition.

So, drawing a very unpleasant short straw ... US actor Dennis Farina has just died of a pulmonary embolism. RIP.

 

[Inertia]

It is a bit morbid, but as part of my ongoing mission to rise awareness of DVT/PE, I have decided to post in this thread every time that I hear about somebody famous suffering from the condition.

So, drawing a very unpleasant short straw ... US actor Dennis Farina has just died of a pulmonary embolism. RIP.

I liked him

NSFW

View: http://www.youtube.com/watch?v=J_MSg8CyvEM#at=96

 

[ColinJ]

I liked him

NSFW

View: http://www.youtube.com/watch?v=J_MSg8CyvEM#at=96

I didn't recognise his name, but I certainly recognised his face.

Earlier today, somebody sent me a link to an article about a young pro cyclist from Rwanda who developed DVT/PE after a flight. It goes to show that it isn't just older, less fit people such as me who become victims! Another scary example - Serena Williams.

 

[shyfire]

Add Viktor Rothlin European Athletics Championship 2010 Marathon gold medallist to the list of fit young athletes. DVT/Bilateral PE in 2009 after a flight he made an amazing comeback the next year.

 

[ColinJ]

Latest update ...

I went to have a few health checks today and a chat with my consultant.

My blood pressure was about 130/80, a little high, but I am happy with it in the circumstances. I should be able to get it down to the healthy range by losing more weight and doing more exercise.

BMI is a crude indicator generally, but it does work pretty well for me. When mine suggests that I am underweight - I am; when it suggests that I am overweight - I am! My BMI is currently 26 which is just in the slightly overweight band. I'd agree with that. Considering that I started off pre-illness at a BMI of 31, I think I am doing pretty well. My waist is now about 25 cms/10 inches smaller, though still about 18 cms/7 inches too big..

A urine test for numerous different things didn't shown anything untoward. (I'm not sure exactly what the tests were for, but I remember the nurse mentioning glucose, proteins, and ketones.)

But ... I have clotted again for no apparent reason, so something is still going wrong!

The consultant wants to carry on looking for an explanation, so the next time I have an INR blood test done (for checking Warfarin dose), I will also have a blood test done to check for prostate cancer. It is fairly common in men of my age, and cancer can cause clots.

I am going to have another chest CT scan done so we can see in detail what the current state of my heart and lungs is.

We discussed the long-term ... As expected, the consultant pointed out that lifelong anticoagulation is the standard response to my condition. I'm not 100% happy with that, but I agreed to take Warfarin for another 12 months and to see him again to reconsider, this time next year. I probably wouldn't risk stopping the drugs altogether unless we can work out why I keep clotting and do something about it. I might consider switching eventually to one of the new anti-clotting drugs which have several advantages over Warfarin, such as not needing dose adjustments or blood testing. The problem is precisely that they are new so doctors do not yet have long experience of patients using them.

So, thank you, NHS, for doing those things for me!

Slapped wrists, NHS, for:

• Ordering an ambulance to take me to the clinic without checking that I needed one. I needed one a year ago when I was seriously ill, but today I didn't! (I got back from the clinic, by public transport, and found that an irritated ambulance driver who'd had a wasted journey had put a card through my letterbox.)
• Not managing to transfer my last test results from one NHS trust to another in 8 weeks. I know that billions of pounds have been wasted trying to develop a proper NHS IT system, but couldn't somebody just have posted them up in a Jiffybag! It is pretty bloody bad that the only update that they have up here is a copy of the A&E release note that I handed over!

I have been feeling a lot better this last couple of weeks. I have much less shortness of breath, and have managed several 6 mile hilly walks and a hilly 20 mile bike ride. I am probably back to about where I was when I came off Warfarin back in March, but this time I am staying on it, so I should continue to make progress.

I have some visits to look forward to from my family and friends, and after those are finished, I might organise another local forum walk, if anybody fancies 8-10 miles of Pennine loveliness with a cafe visit thrown in?

 

[coffeejo]

I have been feeling a lot better this last couple of weeks. I have much less shortness of breath, and have managed several 6 mile hilly walks and a hilly 20 mile bike ride. I am probably back to about where I was when I came off Warfarin back in March, but this time I am staying on it, so I should continue to make progress.

I have some visits to look forward to from my family and friends, and after those are finished, I might organise another local forum walk, if anybody fancies 8-10 miles of Pennine loveliness with a cafe visit thrown in?

All sounds very positive, Colin.

 

[ColinJ]

All sounds very positive, Colin.

Thanks.

I rang the consultant's secretary this morning. She told me that once the system has you down as needing 'patient transport', it will continue like that until you cancel it. Nobody told me about that, and nobody told me that a vehicle was being sent out for me yesterday. It's a nice system for (really) old, frail people but I am independent again and wasted their time yesterday. It made me feel guilty, even though it wasn't my fault. One has to find things to beat oneself up with, don'cha know!

I still feel a bit tired when I shouldn't. Mind you, I'm not getting enough sleep at night so it isn't surprising that I flag during the day. I'm usually okay when I'm walking or cycling but when I stop I just slump.

And now, I have been summoned out to walk the hound again. We have decided to take him up the hill by bus, do a walk up there and then I'll walk him down the hill while his grandmistress goes to work up there.

 

[trio25]

All sounds very positive, hope they work out what is causing it. I sympathise with the not wanting to be on drugs for life, I have that issue (although for a completely different condition). Like you I have had issues after coming off drugs, 12months and talk about it again sounds sensible.

 

[potsy]

Good stuff Colin, nice to hear some positivity again.
I'll be up for another walk if you get one organised

 

[Wobblers]

It's been a long old year, hasn't it? Glad to hear that things are looking up at last.

 

[ColinJ]

It's been a long old year, hasn't it? Glad to hear that things are looking up at last.

It certainly has ... I was already ill in bed at this time last year, but it was another couple of weeks before I blacked out and was an emergency admission to hospital. That 2 week delay nearly cost me my life, so I am lucky to still be around now, wittering on about my illness!

I would like to find out why I am getting the bouts of extreme fatigue and foggy-headedness. I felt like that for about 2 hours at lunchtime today and it is pretty debilitating. All I can do is sit or lie down in a quiet room and wait for it to pass. I don't have the strength or concentration to do very much while I am feeling like that. Even watching TV or posting on CC can be too much.

I found a thread on a health forum where people with exactly the same symptoms were discussing what might be to blame. It ran to 13 pages over several years, but nobody had managed to sort the problem out; not exactly encouraging! Still - between slumps, my Googling powers are pretty good, so I will continue to hunt for clues as to what is behind this. I don't think the NHS is going to find out for me. I read about people who'd had MRI scans, CT scans, lots of blood tests, anti-depressants, counselling, you name it, they and their doctors had tried it - some people had even been suspected of having Münchausen Syndrome!