4 replies to this topic

[lavenderlilly]

Hi coolrunners

This is about my husband, who is also a runner.

I start by last August, when my hubby (46) experienced a severe chest pain which came & went a few times during 1 day.
It scared him enough to see a doctor. He even had the "attack" while with the doc.
The doc, I will call him Dr N, ordered some blood tests and the results were back the next day.
When my hubby phoned for the results, he was told that they are good, there is nothing wrong with him, he's perfectly allright and can continue working as usual...

About a month ago, hubby came home from work with a sore and very swollen left calf.
He even ran a hilly 7k race with it.
The pain was getting worse so he went to see Dr N.
Dr N sent him for an ultrasound which showed a blood clot.
Back at Dr N's, the doc was reading in the Google about DVT.
He then prescribed warfarin (coumadin) 5mg and a blood test (INR) after 3 days.
Then 8mg warfarin another INR test, 9mg warfarin INR test...
At that time my hubby found out a bit about DVT so he asked Dr N if the August "incident" could be related.
Dr N said "now that you mention it, I better send you for a lung scan"...
The scan reveiled not 1 or 2, but several clots in each lung..
Also at that time the INR test showed "something" positive, so Dr N ordered a blood test just for that "1 thing". (INR at that time was 2, which Dr N said it was good so hubby stayed at 9mg of warfarin).
Then Dr N closed his surgery and moved to north coast.

Hubby saw Dr H who said that INR should be between 2.5-3 so it's now to 10mg warfarin with blood test next Monday.
Dr H also ordered a chest ct pulmonary angiogram, which will be done next Tuesday.
We understand now, that what happened in August was pulmonary embolism (PE).

Dr N never said much about what was happening, hubby found out more from the nurse at the pathology. She recommended hubby to get compression sock for his still swollen calf.

Dr H on another hand was saying a lot of frightening things, it seemed that everything was going from bad to worse.

The test Dr N ordered, because "something" came back positive was for Immunology, Cardiolipin Antibodies and the result were:
Cardiolipin IgG (EIA) High Positive >80 GPL (<20)
Cardiolipin IgM (EIA) Negative <20 MPL (<20)

Dr H gave us another frightening news, that our 17yo daughter could also carry the gene so we should get her tested.

Yesterday my hubby saw yet another doctor, Dr P (we have got only a medical clinic now with a different doctor each day).
Dr P is an older doctor and very cheerful, giving us hope, that hubby can have a "normal" life, he will be running again, just needs to adjust a few things and get used to those adjustments...

I was wondering, if there is anyone with the same "condition" and can life be "normal" again?

Dr H told my hubby, that he has to be carefull, that he can "go" any time... How true is it?

I am hoping so much, that there is some good news...

Thanks for reading it.

L lilly

[undercover brother]

hi LL,
sorry to hear of your husbands woes.
there probably aren't a heck of a lot of male coolrunners out there with a previous DVT & PE who have anti-cardiolipin antibody.
and even if there were their experiences may not neccessarily reflect that of your husbands due to individual differences.
if you are concerned about the different medical advice you are receiving and/or about the continuity of such care could i suggest a specialist opinion if this hasn't been done already.
there are a few people your husband could see which makes it hard: either a general physician, respiratory specialist or haematologist.
if you have to pick one probably the former.
you would need to get a referral.
and of course finding one who is running-sympathetic would be gold!
bro

[Embank]

Hi LL,
I am a female runner with no risk factors for DVT and yet for some reason a couple of years ago I had an extremely sore calf that days later was found to be a DVT. It was a small clot, I had no PE symptoms and was never scanned. I have heard that runners can be at higher than average risk of DVT because we have lower heart rates and clots in the veins are related to low blood flow... but your husband has tested positive for some clotting problems so that would explain the clotting. In any case it is quite scary to have the PE possibility hanging over your head and I hope you get some good news. Certainly it is safer that you now know about it and he can be medicated and monitored.
In terms of running. I was allowed to run as soon as the clot had been stable for 2 weeks. It felt strange for a couple of weeks. I wore a compression sock - actually a cycling arm warmer that certainly helped when ever it was aching. I wonder what has happened to the blood flow in that right leg. My physio says that my left calf is tiny and my right leg is even smaller. The DVT leg is certainly smaller but it could easily have been that way before the DVT. It hasn't really affected my running...hopefully that is some good news for when the clotting issues are sorted. Sorry I don't know much about clotting other than people (such as those with artificial heart valves) can be successfully medicated for clotting problems.

[tank girl]

Hi LL,

I did a lot of online reading when I got my DVT (acute injury followed by immobilisation, no genetic risk factors). You won't find much information in Australia. I was fortunate to have extremely good care - I raised concern with my physio, who promptly freaked out and recommended I go straight to emergency if it felt even the slightest bit worse; then at the emergency room I saw a very reliably and awesome emergency physician who sent me for the right tests.

But once back at my GP I did not get much information - mostly just paranoia - so I took it upon myself to read, and the vast majority of useful information I got was from America. My focus was particularly in relation to returning to sport and self-care, but I came across a lot of genetic factor information also (that wasn't relevant for me). My DVT did not propagate so after a week of Clexane (LMWH) the only thing preventing my return to running was a broken foot.

With your husband's compression requirements, I can't recommend enough the Ames Walker and RXfit garments available on their website. The Aussie dollar is strong against the US dollar and their medical compression garments are a tiny fraction of the cost of the Jobst ones available at your pharmacist. They even have a whole section dedicated to menswear - and compression sport socks!

I don't have all of my links anymore but I'm sure you will find many sites. One site that I found particularly useful was Tim Hentzel's blog: http://www.hentzel.com/clot.htm because he talks about his multiple DVTs and PEs and the feelings he goes through. I mean, the main symptom of a PE is "chest pain, and a feeling of anxiety." How useless is that? You tell someone they have a DVT and that they should go to the hospital if they get chest pain... the first thing they do is get chest pain and have an absolute freak out about it (there's your anxiety). Also it's a blog by a man so that might be more palatable for your husband to read. It also contains some links.

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As for Embank's experience, I would expect your DVT leg to be the larger one, as an affected vein reduces flow back to the heart - blood pools in your leg, and hence the recommendation for compression. Perhaps you have been compensating and using your other leg more?

[lavenderlilly]

Hi again,

a thank you for your replies.

What my husband has is very rare (as UCB suggested).

His INR is now 2.4 and yesterday he went for angiogram.
When the results were ready, he was contacted by the radiologist and told to go immediately to Liverpool hospital, because he has pulmonary artery embolism.
The results were faxed to Dr H who requested the angiogram and he phone Liverpool hospital for admission.
At the hospital they were surprised that hubby could breath ok and had no pain at all.
They had him hooked up to all different monitors.
They did new INR, which was the same as before.
The specialist looked at the results - we had the angiogram with us as well as the ct scan, which was done before.
He said that there is an improvement between the 2 scans and that the treatment is working.
He also said that hubby can continue working and carry on as usual, but if any problems or pain occur, then go to the hospital immediately.
We got refferal to see the specialist again in January and another angiogram.

It was a very frightening experience, but we think, that the doctor who did the angiogram did the right thing.

It all seems strange, as if the results of all those tests belonged to someone else. Hubby feels well & fit...