DVT, PE and blood thinners.

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Fri Nov 17, 2017 12:46 am

trailgumby wrote:
lgbran wrote:...Physical and mental health is something you can't take for granted.,
Cheers
Amen to that.


++ to that.

I’ve only agreed to prolonged time off the bike due to the uncertainty around the underlying cause. It has been a very slow recovery for me. The initial treatment with the CDT got rid of all the dangerous clot, but the long term scarring and PST is no easy fix.

My temporary IVC Filter comes out before Easter, probably after my January Ultrasound.

It’s likely I’ll be on the anti-coagulation for life, so I gave up bike racing and sold my race bike, but I am going to get back to commuting daily and going on weekend rides. I’ve got a new frameset coming in February, so I will have a project to work on until the filter is removed, then it’s a case of getting back in shape. I’m 10kg up on my weight at the moment, and the mental health is suffering because of it. I see a psychologist every couple of weeks to get me through. Physically my leg is slowly returning to what i’d call normal sensations. Hopefully the vein has shrunk a bit more and opened up at the same time. At the last scan it was still almost completely blocked, but as I have large collateral veins it’s not a huge issue.

Ultimately I think i would choose riding and dying early over sitting around and getting fat and dying of obesity. Where I struggle now is that my 2 hour commute on the bike has been replaced with 3 hours on a bus, and I no longer have time for any other physical activity as I have already lost an extra hour out of my day. My wife has been back at uni so I have been getting up to 5:30am, go to work, finish at 4, pick up kids at 5:45pm on my way home, then get them sorted. My wife gets home at 7:30pm, so there just isn’t any time in the day left at the moment.

Here’s hoping that 2018 turns things around.
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

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trailgumby
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Re: DVT, PE and blood thinners.

Postby trailgumby » Fri Nov 17, 2017 6:10 pm

queequeg wrote:Here’s hoping that 2018 turns things around.

That's tough. Can they do anything to mechanically remove the clot so the vein can shrink down (if I've understood that correctly)?

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Fri Nov 17, 2017 6:24 pm

trailgumby wrote:
queequeg wrote:Here’s hoping that 2018 turns things around.

That's tough. Can they do anything to mechanically remove the clot so the vein can shrink down (if I've understood that correctly)?


I already had the wire up the vein with the clot busting drugs. What is left is the stable hard clot on the vein walls, otherwise known as scarring. They initially discussed sticking the electric eel in there to stir things up if the clot busting drugs didn't do their thing, but they did not do that in the end. From what I am told, the little mechanical thing is only effective on clots that are still "new", whereas I was sitting around for about 12 days before they got to me with the CDT (7 of those were in another hospital getting Clexane shots, but nothing else).

The only other option is a stent, which my doctor has ruled out saying that the preferred option is to avoid surgery if we can, and since my leg is pretty much unblocked, he says a stent won't change anything and will just add complications later in life.

The vein has shrunk on it's own over the last 3 months. The first scan in June had it at 5cm. The followup in early October had it at 3cm. Doc is hoping for 2.5cm in January. There is no indication as to what is "normal" for me, but my rather unique collateral veins suggest that either I was born this way, or I have had previous clotting without showing any symptoms (or both!)
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

g-boaf
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Re: DVT, PE and blood thinners.

Postby g-boaf » Sat Nov 18, 2017 12:21 pm

queequeg wrote:
trailgumby wrote:
queequeg wrote:Here’s hoping that 2018 turns things around.

That's tough. Can they do anything to mechanically remove the clot so the vein can shrink down (if I've understood that correctly)?


I already had the wire up the vein with the clot busting drugs. What is left is the stable hard clot on the vein walls, otherwise known as scarring. They initially discussed sticking the electric eel in there to stir things up if the clot busting drugs didn't do their thing, but they did not do that in the end. From what I am told, the little mechanical thing is only effective on clots that are still "new", whereas I was sitting around for about 12 days before they got to me with the CDT (7 of those were in another hospital getting Clexane shots, but nothing else).

The only other option is a stent, which my doctor has ruled out saying that the preferred option is to avoid surgery if we can, and since my leg is pretty much unblocked, he says a stent won't change anything and will just add complications later in life.

The vein has shrunk on it's own over the last 3 months. The first scan in June had it at 5cm. The followup in early October had it at 3cm. Doc is hoping for 2.5cm in January. There is no indication as to what is "normal" for me, but my rather unique collateral veins suggest that either I was born this way, or I have had previous clotting without showing any symptoms (or both!)


You are one lucky man getting away from this the way you have. I hope 2018 turns around for you. Hang in there!

lgbran wrote:I got back on the bike after Xmas and need to excercise daily for my ongoing mental wellbeing. I plan to ride as long as I can as in years, only ride now when the weather is favourable , otherwise use my concept 2. Rower and indoor spin bike to fight my demons. Physical and mental health is something you can't take for granted.,


So true. Riding is the best thing for that.

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Sun Mar 11, 2018 10:41 pm

So, just a status update on where I am at now.

At the last update, I said the Doc was hoping for 2.5cm in January. Well, when he measured on the Ultrasound in January, it was down to 2.1cm, so almost another 33% reduction from the October Scan, and total reduction of 2.9cm.

The doctor scheduled me to have my IVC Filter removed, so I was back in hospital a few weeks ago to have the filter taken out. That was an interesting experience. I had a different doctor taking it out, but all the nurses were the same and they remembered me. Anyway, IVC filter removal is basically a fishing expedition. The filter has a little hook on top of it, so they thread a wire down through your IVC via the Jugular Vein (yes, they go in through the neck), snare the hook, then pull the filter into a retrieval cone which collapses it, and they pull it out through the catheter. It was just a day procedure. Neck was a bit sore/bruised for a few days, but otherwise all good.

At the same time, my doctor has now moved me to 6 monthly visits, and I don't see him again until mid-July. He hasn't told me I can ride again, but he also hasn't said that I can't.

At 98kg (20kg weight gain since May last year), I have had enough of the sitting around and I have decided that the benefits of getting back on the bike, losing weight, and getting my social network back all far outweigh any possible risks from getting another clot. I am still on anti-coagulants and don't see that changing, so that reduces the chances of developing a new clot.

So, decision made, I have a bike fit next week to get my rebuilt commuter bike back on the road, then my journey back to fitness begins. I am expecting it to take me pretty much the whole of 2018, so I am not making any lofty goals other than to start riding again and lose the weight. No plans for any events, no racing, no plans to hit any distance targets. Just get on the bike as often as I can and ride.

So, here's to the journey back!
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Tue May 08, 2018 6:44 pm

So, having been on the bike for a few weeks, and doing the best I can, it was clear that the remaining clot scarring is causing me issues with endurance. The leg gets fatigued very quickly, so while the good leg is sitting there idling, the left leg is screaming out for a rest.

I went and saw a Vascual Surgeon today to review my case history, and see if there are other options besides "do nothing". He did his own Ultrasounds on my leg and affected veins, went through my whole case history, talked about what's going on, said I was a fanatical cyclist (lol), but then said that he believes that he can "fix me". So, looking over the procs and cons at the moment, but the odds he gave me are pretty good. 90% chance of success, 10% chance of it not helping, and pretty 0% chance of making things any worse.

Surgery would involve putting a stent in to open up the vein and restore the inline blood flow out of my leg. It's a day procedure, minimally invasive, entry via the vein in the leg (so similar to before with my CDT).
Compared to the "do nothing" treatment plan, it does at least offer me the chance to return a normal full active life, and the risks seems fairly low compared to the chance of success. If I were to pass on the procedure, his feeling is that I shouldn't expect much more improvement to my current leg function, as the main flow out of my leg is still almost totally blocked, and it's only all the little collateral veins keeping things going.

The surgeon was looking for possible causes for the original clot, and all he could think of was some sort of mechanical trauma or muscle tear causing damage to the vein wall, and triggering the clotting response. However, it's almost impossible to tell.

Stay tuned...
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

madmacca
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Re: DVT, PE and blood thinners.

Postby madmacca » Thu May 10, 2018 10:51 pm

queequeg,

That sounds like the most promising news for a while.

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Fri May 11, 2018 1:30 am

madmacca wrote:queequeg,

That sounds like the most promising news for a while.


I see my GP on Monday to go over it, but my feeling is that unless there is some solid reason why the surgery would be a big risk, in all likelihood I will go ahead with it.

There is not really any way to say how much my body will repair itself, but the surgeon notes that “it’s a real mess of clot in there”, and if you want the swelling and fatigue in your leg gone, this is pretty much your only option. Given that the swelling affects my ability to walk long distances, run, ride etc, I’d have to be given pretty poor odds in order to maintain the status quo (i.e. continue to do nothing).

In a way, this is also me taking back control of my life!
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

g-boaf
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Re: DVT, PE and blood thinners.

Postby g-boaf » Fri May 11, 2018 8:06 am

queequeg wrote:
madmacca wrote:queequeg,

That sounds like the most promising news for a while.


I see my GP on Monday to go over it, but my feeling is that unless there is some solid reason why the surgery would be a big risk, in all likelihood I will go ahead with it.

There is not really any way to say how much my body will repair itself, but the surgeon notes that “it’s a real mess of clot in there”, and if you want the swelling and fatigue in your leg gone, this is pretty much your only option. Given that the swelling affects my ability to walk long distances, run, ride etc, I’d have to be given pretty poor odds in order to maintain the status quo (i.e. continue to do nothing).

In a way, this is also me taking back control of my life!


That's superb news. :) Promising.

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CKinnard
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Re: DVT, PE and blood thinners.

Postby CKinnard » Fri May 11, 2018 9:24 am

queequeg wrote:
There is not really any way to say how much my body will repair itself, but the surgeon notes that “it’s a real mess of clot in there”, and if you want the swelling and fatigue in your leg gone, this is pretty much your only option. Given that the swelling affects my ability to walk long distances, run, ride etc, I’d have to be given pretty poor odds in order to maintain the status quo (i.e. continue to do nothing).

In a way, this is also me taking back control of my life!


I will follow with interest.

The only other option I think is an extended fast and cleaner diet, where you give the body time to catabolize non vital tissue.
I've mentioned on the forum before I was at True North Health in the USA where they specialize in medically supervised fasting.

Some anecdotal analogies pertinent to your condition:

- a 20 something male had a long history (since 6yo) of lung infections due to scar tissue in his lungs being a seed spot for bacteria. The condition is called bronchiectasis. I met him on his 3rd annual trip to the center, and he showed me scans of his lungs before and after he started coming to True North. His scar tissue had diminished by 80% or more, and he had not had an infection since.

- While there, I met at least 4 people who had been advised to get coronary artery stents after heart attacks. They decided on seeking a conservative path via fasting and diet. They had essentially reversed atherosclerotic plaques in their coronary arteries over periods from 1.5 to 3 years. Another lady had an arrhythmia (Wolf Parkinson White Syndrome) that improved significantly after fasting, weight loss, and a clean diet.

I appreciate your issue is with a vein, not lung tissue or arteries... but it is something you might want to file away for future reference post surgery.

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Fri May 11, 2018 10:50 pm

CKinnard wrote:
I will follow with interest.

The only other option I think is an extended fast and cleaner diet, where you give the body time to catabolize non vital tissue.
I've mentioned on the forum before I was at True North Health in the USA where they specialize in medically supervised fasting.

...

I appreciate your issue is with a vein, not lung tissue or arteries... but it is something you might want to file away for future reference post surgery.


It's certainly something I can file away for future reference, but I can say that my issue is unrelated to diet etc, and we're not talking about plaque or anything like that. I had a CT Angio done last year, and my Calcium Score was 0.

Once I have had the vein opened up and have some blood flowing through there, hopefully it will settle. At the moment it's a bit like a blocked drain. Nothing is getting through.
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Mon May 14, 2018 2:08 pm

Saw my GP today, and he said I basically have nothing to lose by being proactive about the treatment.

So, I have called up the Surgeon and indicated I would like to go ahead with it. Just waiting for a conformation on the date, which I should get tomorrow.

Will be good to get this over with and get my leg sorted so I can resume some sort of normal life again!
'11 Lynskey Cooper CX, '00 Hillbrick Steel Racing (Total Rebuild '10), '15 Cervelo S5

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