Tom Stormcrowe

Well, I've officially joined Club Coumadin, as well as HR regulators (Pacerone), and anti arrhythmia drugs. Last Friday, I was hospitalized for an arrhythmia issue as well as Atrial Fibrillation. It caught me and the doctors by total surprise, given my general level of fitness...that's for sure!

So, how many Club Coumadin members we have here, and any of you 50+'rs have some experience recovering from an arrhythmia and A-Fib incident? How long until I start to feel like myself again, that kind of thing.

cyclinfool

Tom,

No advice from me - ticker so far is quite healthy, last EKG the doc said they could but the trace in the text book for what a perfect trace would look like.
More importantly - we are glad you are getting better and wish you a speedy recovery as you get back in the game.

buelito

thankfully I don't take coumadin for heart related issues, but for clot issues... Have been taking it for almost 10 years. I guess my most frustrating thing with coumadin is that I can't take ibuprophen or aspirin... and when I get eadaches or pain, what I want to do is reduce the swelling... and coumadin doesn't mix with 'vitamin-I'... However, it has not slowed me down. I llok at it as something I have to live with, and I make the most of it. I do ride with a phone all the time, I ride with someone when I go offroad, but I commute regularly (50 miles round trip) and have averaged over 6000 miles per year since the coumadin started.

train safe-

NealH

I had an ablation just six weeks ago to alleviate an ongoing Afib issue. And, I am delighted to report that the procedure was successful. They have me on Coumadin at this time but, I should be coming off next week after my follow up appointment (hopefully I will come off the anti-arrythmic drugs too). My Afib dated back 10 years, with episodes typically occurring twice a week for anywhere from 3 to 12 hours each. So I lived with it for a long time and, as a result my atrial chambers are quite enlarged, but being resilient they should recover somewhat over time. Right now I am delighted though, as I have not felt this good in many years.

Its good that you are being monitored and having your issues addressed. I wish I had done this years ago.

I don't think there is a "recovery" aspect to lone or paroxysmal Afib, assuming that is your issue. Once in normal sinus rhythm, the heart pretty much functions normally. My heart would go into Afib on some rides and, if it didn't clear up then I limped back. But, those times where it did clear up I was pretty much immediately back to 100% (give or take). But everyone is different and, there are many flavors of Afib - though none are good - so my opinion here is only the way I see if for the condition that I had.

gcottay

I can't offer a prognosis, just a word of free advice.

Do not skip, avoid or even postpone any physician requests or suggestions that you have your level checked. Don't even think about benign neglect. Coumadin dosing is at least as much art as science.

Wogster

I always thought Coumadin (AKA Rat Poison) was intended for short term use, and that they would switch you to something else, as soon as things were stabilized. This is because Coumadin is dangerous, too little and it doesn't work, too much and you could bleed to death from a shaving nick, so it needs constant monitoring. The most common alternate, at least here in Canada, is low dose ASA, which seems to be able to keep clotting where it's supposed to be. Got a headache and just use regular ASA instead.




The most common drug used for this today, is low dose Aspirin.

NealH

Lot of people take Coumadin for extended times, even permanently. People on this always have to abide by dietary restrictions, have their pro-time checked and dosage adjustments made from time to time. I think taking Coumadin is more a nuisance than a specific potential problem, since their numbers are generally maintained pretty low. But I'm not a doctor so, I digress.

DnvrFox

There are some studies that show the possibility of Coumadin having long-term deliterious effects. Controversial, but at least it should be checked out. Do a google and read for yourself.

Tom - here is a good group to interact with:

https://www.afibbers.org/toboards.htm

I got off of Coumadin 4.7 years ago after my ablation to cure 24/7 uncorrectable atrial fib that I had for 1 year prior. None since.

DnvrFox

I have never heard of anyone bleeding to death from Coumadin. It does not stop the clotting process, just slows it down a bit.

Low dose aspirin is in no way a good substitute for Coumadin in preventing the potential clots in the heart that may be facilitated by atrial fibrillation.

George

My wife was on it for a few months, after she had a hole in her heart repaired. That was about a year ago and everything appears to be normal now. I know she use to bruise easy, but it done the trick while on it. I'm in an over 55 community and a lot of people are on it here. It doesn't seem to bother any of them. Just part of life I guess.

Bionicycle

I’ll be on Coumadin the rest of my life, which could be greatly shortened if I were to stop taking it. For some reason known only to my blood, and or God if you will (because medical science has yet to figure it out) my blood decided to start clotting in my veins at the age of 45 and nearly killed me twice with multiple pulmonary embolisms.

I’ve read all the information available about possible side effects from long term Coumadin use, but the short term side effects for me far out weigh the long tem effects. Short term side effects being gasping for breath and falling over dead, or at the very best spending a week in a hospital getting injected with lovenox in my stomach muscles.

My advice to you Tom, is if you are going to be on Coumadin the rest of your life. Most hospitals have a “Coumadin Clinic” where the people specialize in dosing and answering questions about taking Coumadin. They will be able to help you with balancing your dosing to keep your I.N.R Pro time number where they want it to be. They will have to check your Pro time many times at first until it becomes consistent, and then one usually goes once an month for a blood draw to make sure it’s not going up or down.

I’ve called it the Coumadin club for several years, because it seems almost as if you are a member of a club. I have, through the Coumadin Clinic, a pass, if you will, that allows me to bypass all the paper work at the Lab, and go right in and get my blood drawn. I don’t know how it will work for you, but I see someone I know just about every time I go get a blood draw, and find out they have been on Coumadin for years as well. Sometimes I think half the people in the country are on the stuff… Good thing it’s cheap.

PS… I.N.R. stands for International Normalized Ratio. If you ever figure out what that means, you are ahead of me on that one.

DnvrFox

There is now a home device for taking your INR, stopping the need to go for those blood draws. I have used it in the MD's office - it requires just a pin prick. I understand that Medicare will now pay for it, in place of the lab work. I don't know about private insurance companies.

wrafl

Glad to see you back Tom. The only blood thinner I've been taking is aspirin and been on for over 20 years now. In fact, I use half of the 325mg suggested by the doc to me. I take betablockers as well. I have had multiple trips to different hospital ER for apparent heart attack incidence but all tests were negative and false alarm. I was however diagnosed with anxiety and panic disorder which very much replicate the heart attack symptoms. Now that I know what I have been suffering for years and not heart related, I thought I'd get active and healthy by walking and henced cycling.

Bionicycle

This is going to sound like I’m just making this up, but I swear on the Bible it to be true…
I was going to a Clinic at my doctors building when I first started taking Coumadin, and they had a little machine that you just got your finger poked and a drop of blood taken and it would measure the INR pro time. Things seemed to be going great, and then one time (about three weeks into it) the machine just wouldn’t read my blood. They tried three different times (on three different fingers, I was not happy) and could not get a reading that made any sense. So, I had to go to the lab at the hospital and have it draw with a needle and tested the way they do it.

Very long story short… we tried at least three more times after that, and the little machine still wouldn’t read my blood, and I had to go to the lab. The machine seemed to work fine for everyone else (according to the Tech)… The tech that worked at the doctors clinic even called in a representative for the company that manufactured the device(when I was due for a blood test) to see if it was something she was doing wrong, and he couldn’t get it to work with my blood either. He said he had only heard of this happening one other time, and that I would be better off just going to the lab to have it checked. So in frustration I quit that clinic and joined the one at the hospital so I can just go to the lab and have it done. They claim that the way the lab measures it is more accurate anyway, so there you are.

I told my doctor about all this of course… and that was when he made his brilliant diagnoses that I was “Weird”, and had “Weird Blood”. I was thrilled, as you can imagine. But, after nearly 30 different blood tests that my Hematologist specialist ran, the “Weird” diagnoses has proven to be as good as any.

tenzing211

I too suffered with afib for awhile, and ended up in the ER on a couple of occasions, the first after a very strenuous ride in the high heat of the Texas Hill Country. The ablation worked well, but remember this, your body is NOT a machine like your bike. You cannot swap out your valve, or burn the interior of your heart (ablation) and think its like putting on a new cassette and chain. Be patient. Allow your body to recover. If you go for a ride on coumadin and take a spill there is the potential that road-rash becomes life threatening. Club Coumadin? No way dude! Be patient! Give yourself the shots each night, take the pills each day, go to the pool for exercise and by the time the Tour rolls around, you'll be back in the saddle.

Tom Stormcrowe

What really sucks is that I had planned on a 180 mile Wilderness trek up in Glacier National park this Summer, and my cardiologist nixed that completely this year. I was going to backpack solo from East Glacier to the Canadian Border and then back down the Flathead Valley to West Glacier. He said nuttin' doing.

Dchiefransom

Been on Warfarin for over 2 years now. It's one of the main reasons I can't ride a regular bicycle. It seems to have affected certain veins in the area where I sit on the seat. I also have slight rectal bleeding occassionally, I think the hemmorhoids bleed a little after my 10mg days. Have to avoid foods high in Vitamin K, which reduces the effect of the Warfarin. I get A-Fib when I'm dehydrated, which can happen easily when you deliver mail for a living. It seems better to live with Warfarin than try to do it after a stroke caused by a blood clot.

DnvrFox

As techs have a most difficult time drawing blood from my apparently deep veins, I greatly appreciate any device that can reduce the trauma of multiple holes in my body.

IV's are even harder. When I was first diagnosed with AFib - long, horrible story - they would not let me drive home, but insisted I be taken by ambulance to the hospital. They would not release me from the clinic until I had an IV installed. Three teams of IV "Specialists" and 2 hours later I was still lying in the clinic, without an IV. Finally, they let me get in the ambuiance, and the ambulance attendant assured me that he would get an IV in. Nope. He said he would have to "cut me down" - do a carotid artery IV, I guess - if they had an emergency. I finally got to the hospital, and there someone put an IV in - I don't really know why I needed one, but it seems to be some sort of a hospital ritual, needed or not.

When I had my ablation done, it was required that 2 days before, I have a contrast IV with a dye injection. Even after my warning them months ahead of time that I was a hard IV person, they could not do it, despite their claims of never not getting an IV insert.

Of course, they could not do it. So, I came back the next day and they had a cardiologist there to do it, and he could not either. They finally ended up calling UCLA to find a protocol for individuals with no arms, and they gave it to me in my foot.

Bionicycle

^^^^Over the three or so weeks time that the Hematologist was drawing test tubes full of blood for all those tests they did, I was wanting them to just install a tap, or faucet of some type, so that they didn’t need to keep sticking me.

My blood is probably better traveled than I am…

But now, once a month for a blood draw/test isn’t so bad.

JanMM

Advice from a nurse who works in patient safety: Make sure that you always have a clear understanding of the warfarin dose is that you are to take in milligrams. You may end up taking half tabs or a tab and a half depending on your starting dose and lab results and sometimes folks get confused about what the actual dose is. The frame of reference when talking about your warfarin dose with your doctor, nurse, pharmacist should be mg. If you are told to cut back from one tab to one half tab, confirm with them that one half tab is 2mg, or whatever.
And, when in doubt about the correct dose, ring them up.

Wogster

I think this applies to all medications. What we usually do when going to a doctor or hospital, is take the medications with, doctors and hospital staff can then get the proper name and dosage from the container.

JanMM

Certainly applies to all meds, but especially to coumadin, where it's common for the dose to change.

Keeping an accurate, up-to-date list of meds is one method of avoiding lugging a bag full of pills every time that you go see a provider.

rideorglide

I feel your pain and I'm glad to hear you are heart healthy now. Anxiety disorder is no picnic.

I have similar experiences, in that I've had an ER trip. Suspected but not confirmed supra ventricular tachycardia (SVT).

It all started after my Garmin HRM went bananas during a solo long, technical MTB ride on a trail where you might not be found for days. I had trained for it for a year and was aceing the ride, including some log rides. Everything was going fine.

I stopped for a wee rest, a powerbar of sorts and a gatorade, and got back to riding at an easy pace. Then the HR alarm preset went off, at 175, and then zipped back down, and then back up to 190 or 200, I can't remember much now. But it was totally terrifying, and I probably had a panic attack. Were the spikes for real? Were they due to sweat in the sensor or batter compartment, electrical interference from overhead wires.

Feeling real strange, I walked, prayed, promised myself to go see a doc, and managed to find a short cut out to a trail I knew led back to the lot. And things went back to normal. I went to the doc and had a normal EKG. The doc called my MotionBased HR readouts "artifacts." It happened again during a sweaty run —*the reading went to 170 and then 220. I walked home.

And again in the gym and at work, it happened again with a different HRM, a Polar, a sudden spike to 150 or so. I had the HRM on as I was about to go to the gym to work out, I felt strange as if it were an arrythmia, so I admitted myself to an ER.

By the time I was in the ER, I was at 101, and stabilized, so again hard to tell if SVT or panic, no-one seemed to be sure what was the deal, and they kept me overnight. The next morning I had a choice between an ablation where they attempt to induce the SVT or whatever it might be, or go on beta-blockers. With the risk of pacemaker associated with ablation, it was a difficult decision to make and I went with the beta blocker. I've since been switched to a calcium channel blocker.

The panic and worry is a hard thing to overcome when it gets in your mind, and since I get occasional "twinges" in the chest area I can easily get a panic attack.

Oh I forgot to add I also got a worsening case of Asthma/Hyperreactive airways diagnosed, after working downtown NYC near the former WTC for several months after 9/11. Asthma / hyperreactive airways can cause chest tightness and anxiety on their own.

These days I ride with caution, and a phone and certain medications, just in case.

To complicate things, in case they were not complex enough already ;-) I have two herniated cervical discs, which can cause all manner of aches and pains in odd places, and I play golf and surf occasionally. The golf, in itself can give a good tweak here or there. Work stress can make it all real difficult to figure out what's going on at any given day or moment.

I ride to relax, but it's not easy, and am slowly working back up to what I used to take for granted. I used to be a pretty active in fairly extreme ocean windsurfing, and mountain biking. However, these days a 10 mile road ride at 13 mph avg. with 700 ft of climbing is an achievement.

I'm sure a good part of it is psychological: fear and anxiety, the other part has been difficult to diagnose. I had a halter monitor for a month, including during a bike vacation to Massachusetts, but I was on the beta blocker at the time I think, so that kept the HR really in check.

I know this is rambling, but, there are others who are sure to follow in our various tracks, and it helps to hear from those who've been before, just as I've been helped by hearing form you all over the years.

For those new to these kinds of experiences, just be sure to get yourself checked out with a cardiologist, GP, or pulmomologist if there are respiratory issues.

I'm thinking more in terms of "smiles not miles," as they say, I guess.

Sluggo

I joined the club recently. I had a new heart valve installed in february, and I will be taking coumadin for the rest of my life. I have had no noticeable side effects, but my dosage really has not stabilized yet. BTW, just back on the bike this week.

Velo Dog

I've been in chronic a fib and on coumadin for more than 20 years, since I was 44. I was a runner at the time, and my resting pulse went from the low 40s to high 70s almost literally overnight. They couldn't convert me back to normal rhythm. coumadin for a fib was still controversial in those days--some cardiologists thought it wasn't worth the risk--but my doctor was convinced I needed to be on it.
I haven't had any problems to speak of other than being slow.I could crack off pretty consistent 6:30 miles as a runner, and suddenly I was doing 8:30s and 9:00s. That's one reason i started cycling, because I had no history to compare myself to.
You'll bruise unbelievably if you fall, so try not to do that, but it's not particularly painful or dangerous. Cuts and scrapes will bleed, but I've never had trouble stopping the flow. My cardioligist is a marathon runner and long-distance cyclist (Reno to Yosemite in one day at age 50, about 220 miles with several 8,000-foot passes), and he encourages exercise for most AF patients. It's never...well, I was going to say "it's never slowed me down," which the af clearly has. But it hasn't changed the way I live my life. You'll get used to it, learn to live with it, and in my experience, at least, it's not that big a deal.