Atrial fibrillation (AF), stroke risk and anti coagulation therapy - why doctors hesitate to treat, and what you need to weigh up.
NOTE: I am not medically qualified, this is a layperson's comment. If your doctor disagrees with what I am about to say, there will be good medical reasons for it in your individual case - so go with your doctor.
In my new post-caregiving life I volunteer for my local NHS trust, as part of which I have just sat through a seminar on cardiovascular disease for GPs, specialist nurses and allied professionals.
This included a half hour presentation on anticoagulation therapy in atrial fibrillation. The speaker was the lead specialist in his region: an excellent presenter, who unwittingly laid out for me clearly, with diagrams and videos, exactly what had first disabled then killed my mother, and why her doctors' decision not to treat her with anticoagulants was wrong.
I do not blame those doctors. They considered my mother's case carefully and came to their best clinical decision at the time. The risks they had to weigh were:
1. If they gave aggressive anticoagulant therapy (often called 'clot-busters') the patient could have suffered a bleed in the brain. This is a known risk.
But
2. If they withheld it, the patient could have been harbouring a large blood clot in her left atrium which would detach, head straight up the carotid artery and lodge in the main central artery in her brain causing a catastrophic stroke. This is what actually happened.
And this is what Dr H told his audience today: "we've all seen cerebral bleeds, they lodge in our memories and they wreck our perspective on risk. I've seen lots of patients on stroke wards with no quality of life and no prospect of recovery because doctors were afraid to treat, but I've never had a patient thank me for preventing the stroke they didn't know about because it didn't happen because I gave NOACs."
So if you find yourself in the ER watching your loved one's doctor wrestle with this decision, don't be afraid to ask. Ask what risks he or she is weighing up, what the likelihood is of those things happening, and what the probable outcomes are.
It could be that your loved one is among the minority of patients for whom anticoagulation is certainly too dangerous to attempt; but it could be that your doctor is among many whose fear of one risk prevents them from treating a worse risk effectively. Your doctor is the best judge in each individual patient's case, but what you can do to help is ask to be talked through the decision-making process.
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cwillie, the only thing better about newer anti-coagulants is they haven't been around long enough to leave a trail of evidence.
CW, this particular situation was about acute symptoms. What I hadn't properly grasped at that time was the significance of my mother's silent AF, which was only just beginning to be mentioned. Nobody sat me down and explained the likely/possible chain/s of events precisely, they just stood around looking worried. Would I have argued if I'd known then what I heard fully explained today? No, but I'd have asked more questions (and possibly hit the nuclear button of calling my friendly haematologist ex for a second opinion).
In her late 80's my mom was being aggressively treated with multiple bp meds, crestor and aggrenox due to her TIAs, history of coronary bypass and atrial flutter (I still am uncertain what the difference is between Aflutter and Afib). Today she only continues with the low dose ASA and propranolol she has been taking since her heart attack 40 years ago. I expected a stroke to take her long ago, I only hope it is a massive one and does not cause her even greater disabilities, this is no kind of life.
The use of TPA or clot busters remains controversial and there is no wait and see because they need to be given as soon as possible to be effective. There is a long list of contra indications which guide the decision which I can't remember.
The truth is that your mothers decision may or may not have influenced the final outcome so be comforted that either way was risky.
The most commonly used anticoagulant is Coumadin generic Warfarin. It is cheap and easy to take but you do need a blood test about once a month or more frequently if your blood levels are difficult to maintain in the desired range. There is an increased risk of bleeding from any area of the body and the bleeding takes longer to stop. The test is similar to a diabetic finger pick and it is even possible to use the meters at home but your Dr has to make any necessary dose adjustments.
Anticoagulant therapy with Coumadin can be reversed in an emergency.
The newer anticoagulants which are much more expensive have no antidote and do not require regular blood tests.
It is true that Coumadin does or can cause all the side effects that Pam Stegma mentions. However as we advance in age many of these things will befall us without the help of Coumadin.
You make the best decision at the time with the best information you have available and I personally would accept the TPA if I was having a stroke and it was not contraindicated.
Now the reason CM's post sent shivers down my spine is because I have been ingesting said rat poison for several years because I have Afib probably due to heart valve disease. I can picture that clot shooting up my carotid like a speeding bullet.
Now last August my appendix ruptured and I had emergency surgery followed my numerous complications. The surgery itself was performed safely because they were able to reverse the Coumadin. The after care was less than stellar and i developed a large clot in my left atrium among other things and I am still waiting for it to completely resolve before further treatment of my heart problems. That clot is very comfy in my left atrial appendage and has no wish to leave home.
These clots do resolve and cause no further damage and with time become firmly attached so the risk of a quick trip up the carotid is lessened.
Am I sitting here worrying about it and demanding to be waited on hand and foot (fat chance of that in my house) NO, what's the point? I faced several close calls with death in the hospital and certainly thought about it, but I felt loving hands keeping me safe and many of those were friends here on A/C. I even went to visit my mother one night and found her living in a cave full of house plants. She said very clearly " Don't think you are coming in here" The rest of her family were our in the sun seated at a picnic table having a good time.
Did I visit Heaven I don't know. if I did it must have been by the back door because there were no bright lights or hosts of angels.
CM you loved your Mum dearly and did your best by her so never forget that.
We recently went through this decision making process, after Dad's having been on Coumadin/Warfarin for over a decade. He's suffered none of the side effects addressed by Pam, fortunately.
The worst side effect was actually the routine of going for blood tests, as the clinic wasn't located in a place convenient to us. And the parking was terrible.
However, the pharmacists were very, very knowledgeable and were always willing to discuss issues that arose, including every time an anti-biotic was prescribed and whether or not it affected the PT/INR levels.
In my father's case, the triggering issue for D/C/ing Coumadin was the possibility of falling and hitting his head, causing an intracranial bleed. This was after 2 leg fractures (also after having taken Fosamax, which in my opinion is a very dangerous drug).
The question is which is the greater risk - bleeding vs. leg or hip fracture. And in my lay opinion, it's one that only a cardiologist, who's treated the patient long enough to know more about his condition than any other PCP or GP, or hospitalist should answer.
Our cardiologist agreed, in old age it can be an issue of which presents the greater risk potential - a stroke or a fall, which may or may not lead to a head injury. Statistics provide data, but every individual is different. I don't know very many people who could sustain fractures in each leg, recover and now at 97 be walking without a walker.
Sometimes the trade-off reminds me of the scene from the Indiana Jones and the Temple of Doom movie, if I remember it correctly. In front of Indy is rickety old bridge over a river with ferocious crocodiles (or were they alligators?). In back of him are the angry warriors of the evil tyrant, advancing menacingly with swinging swords. Which option to choose? It's the classic conundrum of being "between the devil and the deep blue sea."
On the issue of the newer drugs, taunted and advertised as being able to avoid the sometimes cumbersome routine blood testing, I asked one of my favorite pharmacists at the anti-coagulation clinic about them, such as Pradaxa, which a bumbling PCP (for only a short time as he wasn't up to par and was passed on for someone better) felt should be tried, as if he knew more than our cardiologist. The pharmacist stated that one of the appeals was that regular monitoring wasn't necessary, but that was also the drawback.
If a person became too anticoagulated and began to hemorrhage internally, there were no blood draws to catch it. It could become a lot worse before it became better. And that did happen, not with Pradaxa or the newer drugs, but because another PCP who's no longer on our medical team failed to warn of the interaction between Diflucan and Coumadin.
From then on I checked a list published by the U of M of interactions between Coumadin and anything, ranging from Vitamin K to OTC supplements, or I called one of the pharmacists.
Back to the issue of the newer drugs vs. Coumadin, we opted to stick with Coumadin/Warfarin and at least know regularly what was happening with the PT/INR levels.
CWillie, I don't think Heparin or Lovenox are of as much concern, at least in this discussion, because they exit the body more quickly than Coumadin/Warfarin.
CM, I admire your conviction and dedication in pursing this post-caregiving course. You're an example of how someone can find a life after caregiving, a way to reach out and help others in a manner that builds on your experience, but allows it to be channeled in a different direction.