Retroperitoneal Bleed

[tmueller]

I had Aortic Valve replaced at 28 years old in 1998 with St. Jude Mechanical (Silzone Coated) valve. Other than initial warfarin therapy and silzone related anxiety in first few years and one relatively minor bleed into my knee joint while INR spiked to 4+ I have had by all accounts a pretty uneventful time if not completely positive time transitioning to my life on warfarin and with mechanical valve.

This until 4 weeks ago when, while traveling, I was diagnosed with a "Retroperitoneal Hemorrhage". The symptoms surfaced after an uneventful 8 mile run where I felt particularly good and strong. First pain was about an hour after run and felt like muscle pull in groin. About an hour later worsening and then occurred to me that it was very similar to situation and pain associated with Diverticulitis that was diagnosed a year earlier. Immediately called PCP and received strong Antibiotic prescription. But within two hours pain was extreme and took cab to E/R. CT Scan diagnosed the bleed (no apparent diverticulitis issue). Spent night for observation and pain medication and to get multiple reads on CT Scan in morning (it was a Sunday). Surgery not required. Was told this is very rare but Warfarin does "funny things". Take pain meds, let body absorb the blood and no running for two weeks.

Problem: INR from home test two days prior was 3.0. INR in E/R a few hours after the run was a 2.1. I am 44. My INR's for past many years are almost always in a therapeutic range. I live a very active lifestyle, I eat (and drink) what I want, I probably don't test as often as I should (i do prior to skiing or when I know I am going to be doing something potentially risky). I've been running for most of my time post-valve including a Half Marathon and many runs longer and more strenuous than the 8 I did that morning.

And now I am completely lost. I can't find any data other than a few scholarly publications on much older patients all of whom seemed to have spiked INR's and am struggling to find a physician to help provide answers. The E/R Physicians/Surgeons all want to blame the running. While the pain subsided I still have Groin pain and my left knee feels "frozen" - - apparently tied to pressure on nerves. Still haven't been exercising.

I am extremely stressed about the "Unknown" nature of the cause (if the INR was in the stratosphere I think I could at least process and manage that) and if this is going to cause me to need to live a sedentary lifestyle or have to constantly feel like I am a ticking time bomb that could go off at any time.

So - I am wondering if anyone out here might have thoughts on who I should see? Cardiologist? Hematologist? Other? Anyone else ever experience anything remotely similar?

Thanks in advance and sorry for length of post.

 

[pellicle]

Hi

... by all accounts a pretty uneventful time if not completely positive time transitioning to my life on warfarin and with mechanical valve.

yup ... sounds normal

This until 4 weeks ago when, while traveling, I was diagnosed with a "Retroperitoneal Hemorrhage".

err ... you mean after an "event" ... not as a result of the travel...

The symptoms surfaced after an uneventful 8 mile run where I felt particularly good and strong

without knowing I susoect endorphin release that masked the pain, those euohoric feelings are quite commomly associated with endorphinns.

First pain was about an hour after run and felt like muscle pull in groin. About an hour later worsening

as the endorphins wear off ...

Problem: INR from home test two days prior was 3.0. INR in E/R a few hours after the run was a 2.1. I am 44. My INR's for past many years are almost always in a therapeutic range. I live a very active lifestyle, I eat (and drink) what I want, I probably don't test as often as I should (i do prior to skiing or when I know I am going to be doing something potentially risky). I've been running for most of my time post-valve including a Half Marathon and many runs longer and more strenuous than the 8 I did that morning.

ok ... well the first thing is that your INR sounds to have been ok. 3 two days prior and 2 just after the run.

And now I am completely lost.

well the next thing is to not panic or over react. Let's look at this logically...

I am extremely stressed about the "Unknown" nature of the cause

well lots of things in life fail to get answers, but thats not a reason to panic. It will fcuk with your mind. I had a friend who was a borerline epileptic. she had a small ceisure and felll down the stairs. she wasn't badly injured but it rattled her. she lost all confidence and then spiralled down into depression and anxiety.

Don't follow her. Its a rabbit hole that isn't worth investigation.

(if the INR was in the stratosphere I think I could at least process and manage that) and if this is going to cause me to need to live a sedentary lifestyle or have to constantly feel like I am a ticking time bomb that could go off at any time.

we are all ticking time bombs ... my wife died suddenly from a brain tumor ... no knowkedge, just dead after a flight home to see her parents.

**** happens its not the movies. Life doesn't follow a script. Now just because **** happens is no reason to stop living your life. life is a risk, so enjoy it. You have been taking risks and that is good

Now you have made a new discovery and you can begin researching it to work out how to minimise the risks and continue with the activities you enjoy.

but like the wine bottles say, "enjoy in moderation" ... it *may* be that you need to run with a little more care (for instance). We are all 1) getting older 2) repaired but not "cured" of our heart related issues. Everything is a trade off. Rather than die of X they fix that and push upon you less drastic and more managable issues.

So - I am wondering if anyone out here might have thoughts on who I should see? Cardiologist? Hematologist? Other?

personally I'd start with someone who specialises in circulation issues (vascular specialist) or a knee surgeon who could direct the appropriate scans of your knee to explore what happened.

Sound like a good start?

Then perhaps get some physio on the knee / leg

 

[tmueller]

Thanks. I do appreciate the response, thoughts and humor (humour). I do understand the time bomb comment and am very sorry to hear about your wife but I did need to be brought back to earth and again it is appreciated.

I probably could've shortened the post to more simply: "Concerned that I was in a decidedly therapeutic INR range and yet had a relatively bad bleeding episode." I guess I am really looking to find out if anyone else who is very active and on warfarin has experienced any similar complication WHILE in a therapeutic INR range. Again - all of the publications I can find relating to this type of thing reference older individuals and specifically dangerously high INR's.

 

[pellicle]

Hi

I probably could've shortened the post to more simply: "Concerned that I was in a decidedly therapeutic INR range and yet had a relatively bad bleeding episode." I guess I am really looking to find out if anyone else who is very active and on warfarin has experienced any similar complication WHILE in a therapeutic INR range. Again - all of the publications I can find relating to this type of thing reference older individuals and specifically dangerously high INR's.

Well it could be that the problem is not related to warfarin and that it is caused by something else. Perhaps it was exacerbated in effect but that's why I suggested the vascular specialist or a knee specialist. I know I've hurt myself worse in the back yard than on 3 day ski trips.

General Practitioners are by nature broad in scope shallow on specifics.

Good luck with finding the cause and *do* post back here any results so that others in future may perhaps benefit

 

[Protimenow]

An INR of 2 means that it takes twice as long as normal to clot. A 3 means that it takes 3 times as long.

A small (or maybe larger) tear in a blood vessel - or even in some of your peritoneal tissues (perhaps your belt was too tight when you started running?) could mean that a small injury - covered by the normal discomfort of running for too long - could have caused a pretty good amount of blood to seep into your tissues. If walking or running kept opening that 'wound', the blood would have kept seeping out of the 'wound' and into the surrounding tissues.

For most things, if we get an injury that we know about - we stop doing whatever it was that caused the injury. Running may be a somewhat different thing, and you may have continued to open and reopen whatever it was that ripped or started seeping.

I'm inclined to agree with the doctors -- it was probably something that happened when running. It may never happen again. I wouldn't stress over it. Just be a bit more sensitive to unexpected discomfort when you exercise, and keep that INR in range.

I suspect that you'll be fine from here on...

 

[tom in MO]

Your doctors may have said warfarin "does funny things", but that may not be the cause of your problem. In most cases the bleeding is caused by one condition which, depending upon where the bleeding is, can be compounded by the additional blood due to your lower clotting ability. In your case, something caused the bleed, probably not warfarin since you were in range. All the warfarin did was to increase the time until clotting (and by inference the amount of blood) by a factor equal to your INR. That is 2 times longer to clot, possibly twice as much blood, twice as much pain, but no damage. You are lucky.

If I were you, I'd see a specialist in knees about what cause the initial bleeding in your knee.

That being said, if all your doctors blame the running, this may be true. At your age of 44 you are no longer at your prime and things that were easy and safe become not so easy or safe. Running, particularly marathons, is hard on the body. Running a lot and hard is not really "normal" for humans. Remember the first marathon ended in death. Hunams invented weapons because we cannot easily run down our prey like a cheetah.

Running in competetion is even harder, because you push yourself past the level of safety to win. Irrespective of your heart or anticoagulation therapy, there comes a time in everyone's life to back off and eventually end the high physical stress and high impact sports. Most of my friends don't do it until a serious injury with an associated operation takes them out for good. Some continue to play way past the time of stopping, and suffer because of it, sometimes permanently.

Maybe all you have to do is run for fun, not for competition, or switch to swimming.