GWS ColinJ.. DVT/Pulmonary Embolism

[fossyant]

Good stuff.... Glad things are moving in the right direction. Some good weight loss too. I'll not recognise you next time..

 

[potsy]

Good stuff.... Glad things are moving in the right direction. Some good weight loss too. I'll not recognise you next time..

Not if you think he looks like his avatar you won't

 

[phil_hg_uk]

Some good weight loss too. I'll not recognise you next time..

Oh I wouldnt be too sure about that:

Humble apologies ... There are 6 types of chocolate bar, but there are 14 bars in total - 2 of each type, plus an extra 2.

Since 14 is only divisible by 2 and 7, and it would clearly be delusional to attempt to make 14 small bars of chocolate last a week, I am forced to eat 7 tonight and 7 tomorrow night. (I dare not leave the second 7 any longer than that because my sister and her husband are coming up for a week the following day, and 3 into 7 does not go. Well, it would go 2.3333... times, but that would clearly be stupid!)

So, in front of me now are the following bars:

• Milk chocolate with chopped hazelnuts
• Fine milk chocolate
• Dark chocolate with marzipan
• Milk chocolate with butter biscuit x 2
• Milk chocolate with praline
• Milk chocolate with corn flakes. (HUH?) Yes ... milk chocolate with corn flakes!

Let battle commence ...

 

[fossyant]

Not if you think he looks like his avatar you won't

You are a bad man..... LOL

 

[ColinJ]

Good stuff.... Glad things are moving in the right direction. Some good weight loss too. I'll not recognise you next time..

Well, I will look like an older, balder, greyer version of my avatar!

It is frustrating not being well enough to just jump on my bike and give it some welly but I really must be careful. The clots in my body should be dissolving by now but I can feel that there are still some in my legs and I do not want them to break up and travel through my heart and join the others in my lungs. The consultant pointed out that just because I survived PE twice, doesn't mean that I would survive a 3rd time - it is a bit like playing Russian Roulette; next time, I could 'get the bullet'!

 

[ColinJ]

Ha - I was too busy finishing off the chocolate to get my reply in first! So much for keeping 2 bars back for 'Ron'.

(There is no danger whatsoever of me starting on the other 7 tonight - I am all chocced out now!)

 

[Wobblers]

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!

I remember you posting about how you thought you had a chest infection this time last year. I don't think anyone dreamed (or should that be "nightmared"?) about what the outcome would be!

I couldn't say about the tiredness. A year after breaking an ankle and it still has good days and bad days... (sigh!) Probably all you can do is take it as a sign that you've overdone things slightly and take it easier. Hopefully it should become less often and less extreme as you recover.

 

[GaryA]

Best wishes Colin, I feel humbled by your right stuff attitude I was going to say "been there" but I havnt I just thought I had...

 

[ColinJ]

Best wishes Colin, I feel humbled by your right stuff attitude I was going to say "been there" but I havnt I just thought I had...

Thanks. I've tried to remain upbeat, but the long periods of fuzzy-headedness and fatigue are starting to get me down now! I can only manage to concentrate for a couple of chapters of a book, or half a film at a time. I am having to record films and watch them in 2 or more instalments because I often can't cope with them in one sitting any more.

Something is causing this fatigue, and if the doctors can't find it then it is up to me to work it out.

Before I got ill, if I felt stressed I could just go out and hammer away on my bike. Even though I had lost most of my fitness, I was strong enough to take a lot of hard effort. Now though, I am fragile so I have to be careful.

My sister is coming up with her husband later today. They are stopping for a week. A few days later, an old friend from Coventry is coming up for the bank holiday weekend. It will be nice having a few distractions to take my mind off things.

 

[GaryA]

Thanks. I've tried to remain upbeat, but the long periods of fuzzy-headedness and fatigue are starting to get me down now! I can only manage to concentrate for a couple of chapters of a book, or half a film at a time. I am having to record films and watch them in 2 or more instalments because I often can't cope with them in one sitting any more.

Something is causing this fatigue, and if the doctors can't find it then it is up to me to work it out.

Before I got ill, if I felt stressed I could just go out and hammer away on my bike. Even though I had lost most of my fitness, I was strong enough to take a lot of hard effort. Now though, I am fragile so I have to be careful.

My sister is coming up with her husband later today. They are stopping for a week. A few days later, an old friend from Coventry is coming up for the bank holiday weekend. It will be nice having a few distractions to take my mind off things.

I had a mild version of this Colin in my worse period...a light-headedness and not-quite-here feeling which became self- reinforcing because i almost expected it. I couldnt watch the scrolling items on the news programmes or modern fast paced films on TV; the rapid images gave me a headache. It only faded into the background when I got good news from cardio and gradually pulled myself round so i concluded it was a side effect of stress/anxiety.
I'm not comparing our cases BTW just commenting!

 

[GaryA]

Something for Colin
It helped me in my darkest hours anyway....

Rock Therapy: 1956 by rockabilly legends the Johnny Burnette trio


View: http://www.youtube.com/watch?v=ZJX810XXK2c

 

[MartinQ]

Hi Colin, Just stumbled across this and it feels like you've borrowed the last year or so of my life. Massive, bilateral PEs and DVT last November, feeling rubbish until ~April, came off warfarin in June and then a load of new PEs in last month and back on the rat poison. One difference is that when the GP "diagnosed" the big red swelling in my leg as DVT in November, he gave me a shot of Tinzaparin and then booked me into the local hospital with the clot nurse for an appointment two days later. He didn't explain what the problem was, simply said go to this hospital appointment. So I cycle up to the hospital ... the nurses were not too impressed with me.
Anyway, best for your recovery.

 

[ColinJ]

Something for Colin
It helped me in my darkest hours anyway....

Rock Therapy: 1956 by rockabilly legends the Johnny Burnette trio


View: http://www.youtube.com/watch?v=ZJX810XXK2c

Ha ha - I had not heard that one before!

This is one I use to give me a boost, though I can't handle it (or any other loud noise) when I am feeling really rough ...

Hi Colin, Just stumbled across this and it feels like you've borrowed the last year or so of my life. Massive, bilateral PEs and DVT last November, feeling rubbish until ~April, came off warfarin in June and then a load of new PEs in last month and back on the rat poison. One difference is that when the GP "diagnosed" the big red swelling in my leg as DVT in November, he gave me a shot of Tinzaparin and then booked me into the local hospital with the clot nurse for an appointment two days later. He didn't explain what the problem was, simply said go to this hospital appointment. So I cycle up to the hospital ... the nurses were not too impressed with me.
Anyway, best for your recovery.

Bloody hell, Martin - your GP seems to be half-informed! Attentive enough to spot the problem, but not treating it with the seriousness it deserved, bearing in mind that up to 1 in 3 emergency admissions for PE die from it!

One of my GPs missed the signs of the PE (it manifested itself before my leg got swollen) but when another GP realised that I had DVT/PE, he immediately sent for an ambulance, which left me in no doubt how serious it was! Strangely though, he sent the ambulance to my friend's house rather than picking me up from the health centre, which meant that she had to prop me up all the way back; it had been a nightmare staggering to the health centre in the first place - perhaps it is bad for business for patients to be seen leaving strapped to trolleys!

My local hospital treated it as a proper emergency. I had an ECG done in the ambulance and again within 20 minutes of arriving. I had a d-Dimer (clotting) test done immediately, and had my first shot of Heparin (anticoagulant) within an hour. Over the next 18 hours I had a CT scan of my chest, and ultrasound examinations of my swollen leg and racing, arrhythmic heart.

Leaving you in the dark and delaying treatment for two days could have cost you your life!

Do you know what caused your initial DVT?

I have come to the conclusion that a later clot often occurs round scar tissue from the first episode. Mine, at least, is once again in the upper left thigh. I have read about many people having similar experiences.

The new anticoagulant drugs are looking promising, though they still carry a bleeding risk. I just like the idea of not having to worry about diet, blood tests and INR all the time.

If you haven't already got one, consider getting yourself one of these.

Let us know how you are getting on, Martin. Good luck with your clot-busting!

 

[ColinJ]

Muhaha - the Mark of the Beast!

 

[MartinQ]

Bloody hell, Martin - your GP seems to be half-informed! Attentive enough to spot the problem, but not treating it with the seriousness it deserved, bearing in mind that up to 1 in 3 emergency admissions for PE die from it!

Do you know what caused your initial DVT?

The new anticoagulant drugs are looking promising, though they still carry a bleeding risk. I just like the idea of not having to worry about diet, blood tests and INR all the time.

If you haven't already got one, consider getting yourself one of these.

Thanks, in hindsight it was even worse than that. I'd obviously had PEs since at least August 2012 and been to the GPs a few times last year saying I could hardly cycle 100 meters, never mind miles, but kept getting fobbed off. Then when my leg swelled up with DVT in November, I was actually happy that I had a physical symptom. So went to the GPs and he looked at it and said can you go (cycle) to the chemists and pick up a box of Tinzaparin, which he then injected me with ...
No idea what caused the PEs/DVT, but I'm obviously pinging out the clots somehow. I've not yet had a proper chat with the consultants this time, but one of the nurses did mention that once the warfarin had settled down, I'd probably get switched to one of the newer anticoag drugs, I can't remember which. Personally, I don't have a problem with the diet side (I do with fatigue, muscle/joint aches and internal bleeding) but I'm a bit of a woose when it comes to needles so I'd quite happily stop the INR tests. Good advice about the tag, I've obviously got the yellow card, but yeah, I don't always have my wallet.
Must admit I was hacked off when the PEs recurred. The warfarin had seemed to settle down by May and I was getting a few short rides in and not feeling too bad (relatively). Then went out for a short ride about 3 weeks after stopping but it was obvious after a couple of miles that I had zero energy. Initially put this down to the heat (start of July), then over the next couple of weeks had chest pain, shoulder cramps and heart problems again and it became fairly obvious that the clots were back and time for yet another CT scan. However, I've kept on the bike this time, although it is very slowly and I'm waiting to see how badly the warfarin hits this time ...
One of these days, I'm going to get a "powered by rat poison" cycle top done :-). Great thread by you all.