Anticoagulant therapy


Original Post
Rando Calrissian · · Unknown Hometown · Joined Apr 2016 · Points: 0

Hey Folks,

So this is gonna be super personal, but it is really bogging me down and I need to figure something out and get my head right.

The very short: I have blood clots in my lungs. They first appeared in 2012, I was 24 and otherwise healthy. Docs said "can't figure out why, so you're on anticoag therapy til you die." I started gaming my warfarin (highly do NOT recommend) for climbing trips and had a recurrence a month ago and I am now on a new med that I can't game, it also does not have an antidote/reversal agent, although there are things that hospitals can do if they get me in time. Doc says I need to stop doing this high risk activities.

I sold my mountain bike earlier this year, sold my ice hockey gear in 2012, hardly ride my road bike anymore (if I fall or get hit I am super f'd), and I am even afraid to ride in the car with others behind the wheel, let alone myself. If I get into a car accident I fear I will bleed out before I can get to the hospital.

The solution according to the doctor? Pick up swimming. I am 29 and feel impotent with this advice. I love my adventurous lifestyle. I am by no means a hardman, sending moderates, I climb outdoors and in, I primarily boulder. I also am very cautious with climbing and skiing. If I know I can do something I will do it provided I have the proper safety (partners, pads, etc.). If I think I can do something, I assess the risk and make a calculated decision. If I think I can't do it and I can fall more than a few feet I usually back off.

Is anyone on/climbs with someone on an anticoagulant or health professional and can help me figure this out? I am not ready to give up my outdoor lifestyle but I also the consequences.... Please feel free to PM me if you do not wish you air your personal.

Thank you all for the help and advice.

john strand · · southern colo · Joined May 2008 · Points: 1,575

Get a second opinion---I was told after heart failure"you'll' be on coumadin forever" fuck'm 2 months later my Doc said no. No issues in 2+ years

If you have to take a thinner, eloquis is the one $$$$ but no testing or other bs.

if you got lung clotting at 24, it's time to see a real doc thay will tell you why and not just band aid shit

Daniel T · · Riverside, Ca · Joined Mar 2015 · Points: 15

Rando,

I'm not too sure of your location, I'm in SoCal, but in a past life I used to partake in Ultra distance triathlon (ironman and greater lengths). My coach was a respiratory therapist. If you would like to can put you in touch with him and maybe he could be able to help out.

I wish you the best of luck, if you wish to PM me I will try to connect you two.

MaraC · · Unknown Hometown · Joined May 2011 · Points: 5

Heme-Onc nurse here.

Definitely get a second opinion. It's the MD's job to find out why you've got blood clots in your 20's. Blood tests will tell what sort of clotting problem it is. One of the more common disorders is called Factor V Leiden; it's a mutation in one of the clotting factors that means you're more prone to clots. I know several people with this disorder who are on anticoagulants and still climb and bike. Ask for a referral to a hemotologist and make sure they are willing to have a conversation with you about your plan of care.

Rando Calrissian · · Unknown Hometown · Joined Apr 2016 · Points: 0

I have been put on Eliquis, thankfully they have a manufacturers coupon out making it affordable (I'm a grad student)

As for a second opinion: when initially diagnosed I was chasing the origin for about 7 or 8 months and saw close to about 20 doctors (most were in my initial hospital stay). They found one genetic thing (Factor II heterozygous) but everyone unanimously and independently agreed that it wasn't enough to cause it. I needed to be a smoker, take frequent and excessively long flights, or on birth control (I am a guy and a few doctors did ask if I was on the pill, it gave me a much needed laugh). After the hospital I went through a few different doctors who claimed I had cancer and they were looking for where it was, thankfully and unthankfully I did not have cancer. By the end of it I kind of wanted cancer because I just wanted this search to end and to know. Each time I was cleared they thought I had something worse. Not a great time in my life for sure. Eventually every doctor scratched their head and said "welp, we may never know"

My last hematologist sucked, I did not like a single doc in their clinic and by the end of all the blood draws, CT scans (about 10 in those 8 months), the you've got cancer oh wait never mind, I flat out gave up and took up with just my primary care. It sounds like I should get back into with a hematologist.

Jason Young · · Los Alamos, NM · Joined Jul 2009 · Points: 1,000
Rando Calrissian wrote:I have been put on Eliquis, thankfully they have a manufacturers coupon out making it affordable (I'm a grad student) As for a second opinion: when initially diagnosed I was chasing the origin for about 7 or 8 months and saw close to about 20 doctors (most were in my initial hospital stay). They found one genetic thing (Factor II heterozygous) but everyone unanimously and independently agreed that it wasn't enough to cause it. I needed to be a smoker, take frequent and excessively long flights, or on birth control (I am a guy and a few doctors did ask if I was on the pill, it gave me a much needed laugh). After the hospital I went through a few different doctors who claimed I had cancer and they were looking for where it was, thankfully and unthankfully I did not have cancer. By the end of it I kind of wanted cancer because I just wanted this search to end and to know. Each time I was cleared they thought I had something worse. Not a great time in my life for sure. Eventually every doctor scratched their head and said "welp, we may never know" My last hematologist sucked, I did not like a single doc in their clinic and by the end of all the blood draws, CT scans (about 10 in those 8 months), the you've got cancer oh wait never mind, I flat out gave up and took up with just my primary care. It sounds like I should get back into with a hematologist.
Do you eat excessive amounts of green, leafy vegetables?
BrianWS · · Unknown Hometown · Joined Apr 2010 · Points: 770

Get a second opinion, or even a third as many here are recommending.

I am on mild blood thinners (enopraxin for lung clots) and have a chemotherapy port. I was told that all climbing and upper body activity will be put on hold until my diagnosis is resolved and the port can be safely removed - which could be anywhere from a year to many years, depending on disease progression, curability, and so on.

Since receiving multiple second opinions, it turned out that barring direct impact to the port or catheter (both subdermal), climbing was definitely a tolerated activity. One month later, and I've been climbing regularly without issue - even breaking back into 5.12s pretty easily.

You may need to scale your climbing back accordingly - probably focusing more on routes and cutting back on bouldering. Anything to reduce the chances of injury, which seems to be much more common on boulders than on routes.

Good luck, and be very thankful that those clots aren't from cancer.

Buff Johnson · · Unknown Hometown · Joined Dec 2005 · Points: 545

There isn't going to be a doc that'll green light an activity with trauma potential given your profile. Xa inhibitors work really well, but as already mentioned, there is no back out on the market yet. Some consider it the drug-maker's sick joke on the ER doc & trauma surgeon.

Was thinking maybe to research some of the combat interventions, but I'm not holding my breath on it.

Luke R 84 · · Unknown Hometown · Joined Apr 2015 · Points: 328

I'd honestly look at Coumadin again. It has a reversal agent, it is cheap, healthcare professionals can monitor its effectiveness via INR (as opposed to no real monitoring parameters for the others), and even though it's difficult, if you can make the dietary and few other lifestyle changes, I'd think you could reduce the amount of monitoring necessary. Additionally, with an active outdoor lifestyle, you could miss a dose or two and be somewhat safer than missing a dose or two of Eliquis, since Coumadin (and the anticoagulant efffects) has a longer half life. I'd recommend talking with your pharmacist about it, especially if you know one at an anticoagulation clinic.

john strand · · southern colo · Joined May 2008 · Points: 1,575

IMO the monitoring part alone makes coumadin a PIA big time.

The whole leafy veggie stuff is overblown as well...you have to eat a LOT to have a significant impact either way.

I'm know it sucks to see so many Docs but you gotta find the base cause first

Dana Bartlett · · CT · Joined Nov 2003 · Points: 890

The contradictions and incorrect information in some of these replies underscores what you need to do; get qualified help.

john strand · · southern colo · Joined May 2008 · Points: 1,575

Care to be specific? I happen to think there's some decent advice here and I , for one do know a bit about anti-coagulant therapy

Dana Bartlett · · CT · Joined Nov 2003 · Points: 890

No; not the place or time.

Ryanb. · · Chatt or WA · Joined Mar 2014 · Points: 0

I don't think getting another opinion at this point will provide additional benefit or change your management honestly. Recurrent pulmonary emboli mean you probably need to remain on anticoagulants for life.

If you get more workup you may find that you have some rare hereditary thrombophilia of some type or something else, but you still will likely need to be anticoagulated.

I would stick with your current physicians who are managing your meds, and climb as safely as you feel necessary given your increased risk of bleeding... helmet**

  • *Please note internet advice is worth very little
Rando Calrissian · · Unknown Hometown · Joined Apr 2016 · Points: 0

First let me say thank you for all of the advice. I appreciate every piece.

When I posted, I didn't know what I was fishing for, just casting out and seeing what came up. I guess just trying to reconcile my lifestyle with health limitations. I'll start shopping around for a hematologist that can have an honest conversation as opposed to wanting to swaddle me in bubble wrap.

Jimmy Downhillinthesnow · · Bozeman, Montana · Joined Mar 2013 · Points: 5

Recurrent PE's in your 20s means you've been dealt a difficult hand. I know that would be incredibly difficult for me to deal with and I wish you the best.

I hope you find a hematologist you like, and my only advice is that if you like your primary care doc stick with them, they know you best.

Colonel Mustard · · Sacramento, CA · Joined Sep 2005 · Points: 1,055

Like others say, Doctors won't say yes when it's a matter of CYA. Sometimes they don't know the relative risks of our activities though, it all sounds dangerous.

It is all up to you. I had my own bleeding disorder this year and had a platelet count <10. I actually went climbing in the day before I discovered the problem when I started peeing blood that evening. I started climbing far before I was up to the minimum "normal" platelet count of 150.

But, yeah, if you knock the noggin when you're not clotting, that may be the end of your life as you know it.

Real fuckin' climbing risk vs. reward decisions right there, bucko!

Anfarwal Vr · · Denver, CO · Joined Mar 2012 · Points: 150

I sorry to hear about your predicament. I think you bring up a really great question, one that is rarely addressed (and probably affects more climbers than we know).

I agree with others that you may want to consider an alternative anticoagulation agent. As you mentioned, Eliquis doesn't have a reversal agent (andexanet was rejected by the FDA just a few months ago). Coumadin does, and there is also Pradaxa, is taken similarly to Eliquis and doesn't require frequent monitoring; it does have a reversal agent that the FDA approved (Praxbind).

As for activities-- rope climbing is a hell of a lot lower impact than bouldering. Just something to think about...be safe out there and wear your helmet!

rob.calm · · Loveland, Colorado · Joined May 2002 · Points: 545

I’ve never had to take anti-coagulants but am familiar with them since I’ve twice had open-heart surgery to replace a congenitally deformed aortic valve. The first time was in 1997. A decision was to be made whether to get a plastic valve or bioprosthetic valve. I was 66 at the time. I was told that the plastic valve would probably last a life time while the bio-valve would last about 15 years (my life expectancy at that point was about 15 years). The downside of the plastic valve would be the need to be on blood thinners. At that time. only coumadin was available. All the doctors involved, internists and cardiologists, said that being on a blood thinner meant not so much that I couldn’t climb (but did point out the considerable risks), but that I always needed to be near medical care for a quick response to a bleeding incident. They said that bumping my knee back country would be serious.

I decided on the bioprosthetic. By 2015, the valve had worn out and needed replacement. Given my age, a bioprosthesis was the obvious choice.

During this time, the new anti-coagulants have come on the market. Reading about them, I came to the following conclusion. They are more convenient to use but at considerable risk, since there is really no way to turn off the bleeding. This has been reinforced by two incidents in the past year. A friend of ours and his wife were hiking. He tripped and banged his head. It wasn’t that big a deal, but he was on the new anticoagulants and the cranial bleeding could not be stopped. He died in the hospital a few days later. Another friend of ours was on coumadin because of her plastic aortic valve. She was skiing at Vail and had an accident banging into a tree with serious shoulder injury. Ski patrol got her down quickly and in short while she was in the hospital where the doctors were able to quickly arrest the bleeding. She looks forward to skiing again. A nurse that works in the local hospital told me about a recent case where a guy on the new anti-coagulants fell off a bar stool and banged his head. Bleeding could not be stopped, and he died.
A former colleague of mine, who recently died at age 89, was on coumadin for about 40 years following aortic valve replacement. He played tennis regularly and hiked in the nearby foothills where he could always get easily to medical care. He did have an incident of bleeding when he fell playing tennis, which was easily resolved in the hospital.

Whatever you decide to do, best wishes for your being able to lead an active life style.

Rob.calm

Colonel Mustard · · Sacramento, CA · Joined Sep 2005 · Points: 1,055

Crazy bleeding stories, thanks for sharing, Rob.

Guideline #1: Don't be a jerk.

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