Warfarin, stomach, and questions

[Catie]

I am going to need a valve soon, and I have questions and concerns about Coumadin. I'll mention that my mother experienced a catastrophic Coumadin-induced hemorrhage 9/16/14 from which she passed away after a month in ICU. She had taken it mostly successfully since 1991. Also, she missed a dose in 1995 for her afib, and had a major stroke, which the folks at Emory Hospital in Atlanta attributed to that skipped dose. It was impossible to regulate her INR with Warfarin (generic). Her levels would only stay relatively stable on name brand Coumadin. She did daily home tests.

The idea of needing anticoagulant medication myself is daunting.

1. Does anyone know whether difficulties with Warfarin/Coumadin can be inherited? I am guessing that this is not known. I'd like to get the Warfarin sensitivity test done.

One great concern is whether my stomach will tolerate warfarin. Since 2010 I've had an extraordinarily sensitive stomach and the gastroenterologists don't have a solution. I have a long list of medications that cause intolerable burning, including Prevacid, Benadryl, cold tablets, antibiotics, benzodiazapenes. Of course I can't take NSAIDS. I think I'm going to have to talk someone into giving me a trial run of wafarin before valve choice and surgery.

2. Has anyone experienced any stomach burning, GERD, heartburn, etc., with Warfarin?

Many thanks.

 

[pellicle]

Hi Catie

sorry to hear of your Mum ... I'll address each point as I can.

I am going to need a valve soon, and I have questions and concerns about Coumadin. I'll mention that my mother experienced a catastrophic Coumadin-induced hemorrhage 9/16/14 from which she passed away after a month in ICU. She had taken it mostly successfully since 1991.

I"m sorry to hear this ... but I would ask about how old she was when she passed away? How long was she on warfarin and how was she managed?

Also, she missed a dose in 1995 for her afib, and had a major stroke, which the folks at Emory Hospital in Atlanta attributed to that skipped dose. It was impossible to regulate her INR with Warfarin (generic). Her levels would only stay relatively stable on name brand Coumadin. She did daily home tests.

I'm totally stunned and the science part of my mind has many questions, like "what was her INR before that, how well was she managed and are you certain it was only one dose she missed? People are notoriously bad at reporting their actual situations, especially the elderly.

The idea of needing anticoagulant medication myself is daunting.

given your history I can understand that ... however there are a number of us here who are managing very well ... the key to this seems in the main to manage yourself. While some have good reports of their management clinics, there are huge volumes of reports of stupid / shabby / ignorant and foolhardy decisions by management clinics.

1. Does anyone know whether difficulties with Warfarin/Coumadin can be inherited? I am guessing that this is not known. I'd like to get the Warfarin sensitivity test done.

it would be the first I've heard of such, but then that doesn't really mean much.

One great concern is whether my stomach will tolerate warfarin.

I've never heard of there being any tolerance issues, however if you're prone to bleeds then that's a problem for sure.

I think I'm going to have to talk someone into giving me a trial run of wafarin before valve choice and surgery.

myself I think that's a good decision, however I believe you'll meet stiff opposition. You may need to work with a Dr who creates a need for you to be on it. Then you'll need to have it well managed. I've got a good blog post on self management and I'd be happy to assist you with self management if you wish.

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

2. Has anyone experienced any stomach burning, GERD, heartburn, etc., with Warfarin?

haven't ever heard that but there is always a first. I get some gastro issues with respect to some foods (like some spicy foods) but I've not had that for some time.

Hope that helps

 

[neil]

all good advice, I remember talking to my cardio about my stomach problems and my concerns and he was of the opinion it can be ok or it can cause problems, mind you that was 8 yrs ago and things have moved on, good luck

 

[Catie]

Thanks for taking the time to write an extensive post to me, Pellicle, and for your generous offer to assist with management when/if I'm on it. And thank you, Neil for your remarks as well.

I mentioned my mother's issues mainly to make it known that I can't not take our family's experience into serious consideration as I choose a valve. A beloved family friend--also very competent--experienced three major bleeds. I saw the aftermath of one of hers. Whew. To say I have extreme respect for some of the negative things warfarin can do is putting it mildly.

Just to clarify.... My mother was mentally competent and diligent throughout her course of anticoagulant treatment from 1991 till her death in 2014. She was my age (57) when she started on Coumadin for Afib and died at 81. She was 61 when she had the stroke blamed on the missed dose. For a while she was managed by a clinic but had been on at-home monitoring for years when she had her fatal health crisis. She was taught the "old school" and outmoded way of largely avoiding Vit. K. My father's precise memory has always been a strong suit and his story of her stroke has never varied--the one missed dose. I get it, that this sounds improbable. I don't know what to say, except that this was her journey and I'm reporting it.

I realize it also seems highly improbable that I could have the stomach issues I do. One gastro dr. in 2011 flat-out told me he didn't believe my experience. We ended the conversation because my stomach situation is what it is and there are a slew of medications I can't ingest. During the worst of things I had to eat about every 1.5 hours round the clock for a month to try to sooth the burning after taking a single OTC supplement that set off problems. It's worrisome--iIf i ever have to take a course of antibiotics, for example, I'll probably have to be infused. But for now, yeah, I'm going to have to figure something out about warfarin, even if I go with a bio valve, which I think needs several weeks of anticoagulation. Can't take aspirin. *sigh*

 

[Paleowoman]

Hi Catie - just wondering, are you absolutley sure you will have to take coumadin ? If you have a tissue (bio) valve then it's not so likely that you will have to take anticoagulants. I was 60 when I had my aortic valve replacement and I went with a tissue valve, neither cardiologist nor cardiac surgeon pushed me to have a mechanical valve, they were both fine with me having tissue. I was never given anticoagulants except for the first few days post op I believe when I was given heparin injections which is standard.

 

[neil]

Same as me then paleogirl, , no warfarin which I was happy about,

 

[pellicle]

Hi Catie

Thanks for taking the time to write an extensive post to me, Pellicle,

you're welcome

I mentioned my mother's issues mainly to make it known that I can't not take our family's experience into serious consideration as I choose a valve. A beloved family friend--also very competent--experienced three major bleeds. I saw the aftermath of one of hers. Whew. To say I have extreme respect for some of the negative things warfarin can do is putting it mildly.

I think it was important context

Just to clarify.... She was my age (57) when she started on Coumadin for Afib and died at 81. She was 61 when she had the stroke blamed on the missed dose.

its entirely possible that the stroke was not actually caused by the single missed dose of warfarin, and considering that atrial-fib does cause strokes its possible she was under AC rated ... not knowing it was simply put forward as a possible candidate / contributor by the doctors. Its important to differentiate AF from valve replacement as modern mechanicals are considered low risk (lower risk than AF). However there are many points to consider and I don't wish (at this point) to get into discussion of valve choice.

I realize it also seems highly improbable that I could have the stomach issues I do

probability is not really important when you know that you do or you have a possible familial history, and its always prudent to examine this.

I would still consider a test if that can be organised

Best Wishes

 

[Catie]

Thanks to each of you.

Paleogirl and Neil, good to know you didn't have to do the three months of coumadin/warfarin that I keep reading is required for bioprosthetic valves. Are you both on aspirin? (which I also can't take...)

And you're right--I'm not at all sure I want to be on coumadin. But ever since my diagnosis at 15, I pictured the mechanical, one-operation approach. I'd hate to have a series of valves installed. If I find out I can't take coumadin, that would tip the scale for sure!

Pellicle, I understand and concur. We'll never know for sure the details of what happened with my mom's stroke and the later fatal event. For sure, there are questions surrounding both. At an ER visit a few days before she went into ICU in 2014, they found a huge bruise on her flank and made a note that she was at risk for internal bleeding. She hadn't fallen or mentioned any incident to my father. We will never know why things went so wrong. I should look through those last medical records again.

 

[pellicle]

For sure, there are questions surrounding both. .... I should look through those last medical records again.

do yourself a favour and don't. Its been nearly 4 years since my wife died and while I still go through the "what iffs" and "did I's" --- take it from me that no peace comes from that.

none

We all die, on the scale of time since Otzi fell, went to rest and became part of a glacier, many have been born and die .. a few years here or there ... what's it matter?

What matters is what you did while you were alive, and no matter what you can't find absolution in the analysis of the past.

I was fortunate to have both my mother and father die before my wife, so they didn't go to their graves with that burden. In that respect things followed their natural path. I recall being quite disturbed when I was first asked to decide if my mother should be "marked" as "not for resus" by the hospital ... she was elderly and Alzimers was ruining her, but still being asked that question was (shall I call it) an "expectable unexpected".

When my Dad was diagnosed with cancer (a few years later) I was smart / wise enough to use the time (reduced my work load at work) to spend time at least going through with him (if not repairing) the misadventures of life that fathers and sons have. When his doctor in turn asked me the same question I was no better prepared to answer it, even if I knew those feelings well.

I guess I was lucky that Anita and I had such a wonderful marriage and relationship, so no absolution is really needed. There is only loss.

I will never know what caused her brain tumor, or how long it had been there or if I exposed her to anything that may have caused it / agrivated it, but I do know that it was her flight home to Finland that triggered it to bleed and give her a massive seizure resulting in her death just 2 days after getting home. I duscussed it at length with the neurosurgeon at the hospital where she was taken to. I discussed the type of cancer, went through the MRI's, you name it. **** I'm a biochemist by training, with quite a lot of medical understanding, so you can imagine I was like a ferret after a rabbit ... but you know ... there is nothing down that rabbit hole.

So, like I mentioned, do yourself a favour and just grieve for her loss and celebrate what you had together ... in the end its all you can do.

 

[Paleowoman]

Paleogirl and Neil, good to know you didn't have to do the three months of coumadin/warfarin that I keep reading is required for bioprosthetic valves. Are you both on aspirin? (which I also can't take...)

Hi Catie - I'm not on aspirin, no, not on any heart medication (unless you count Omacor which is simply Omega3 fatty acids which I've been on for years). I wouldn't be able to take aspirin anyway as I have a history of duodenal ulcer. Straight after heart surgery they put me on pain killers (obviously), a beta blocker, a diuretic, a proton pump inhibitor (for stomach, goodness knows why, maybe due to my history ?), a 'stool softener', and heparin injections. The heparin was for just the first three days post op. The pain killers gave such bad side effects that I had to stop them all at six days post op. The proton pump inhibitor I stopped eight days post op as I object to those meds as they are systemic so GP, who wanted me on a stomach med gave me Gaviscon Advance which is not systemic. Nine days post op GP took me off the diuretic as it caused too low blood pressure. The 'stool' softener I had to take for weeks due to my gut going into shut down due to pain and the meds I had been on. The beta blocker (Atenolol) dose was halved by cardiologist at four weeks post op and stopped completely six or eight weeks post op.

 

[Catie]

Wise words, Pellicle, from the voice of painful experience. I am so sorry for all the losses you've endured. Life is such a fragile thing.

Paleogirl, hey, all of that is good to know--thanks for sharing. It's heartening that you came off all that medication. Ya, proton pump inhibitors were trouble for me and I can't take them any longer.

 

[scott.eitman]

I saw it mentioned, but want to make sure it do not get missed. How about a test, not an INR test, but take warfarin prior to surgery to see if your body tolerates it.

I have an On-X valve and prior to surgery, I signed up for the study using Plavix. It took it for 10 days and the end result was that I did not qualify for the test. We knew going into it that Plavix was not an option.

Stay well
Scott

 

[pellicle]

That is precisely what I proposed in my first post. But someone would need to monitor the INR because you can't just take one pull and go "oh it's fine"

You need to be on it for a while. If you are on it for a while you need to stay below 3 and for some people that may be as little as 3 mg daily.

I saw it mentioned, but want to make sure it do not get missed. How about a test, not an INR test, but take warfarin prior to surgery to see if your body tolerates it.

 

[Catie]

Thanks.

Yes. I said this in my first post as part of my reason for discussing these issues:

I think I'm going to have to talk someone into giving me a trial run of wafarin before valve choice and surgery.

I'm 99% sure my current cardiologist will be no help in this and several other matters. He would not answer my inquiry, proposing a trial run with Coumadin and a warfarin sensitivity test. I'm trying to find another physician.

BTW, in a few months ago, when the CT showed the aortic aneurysm had grown, I told him I believed it was probably time to consult with a surgeon. His response was, "Oh you don't want that surgery. It's a terrible surgery." I gathered my records from out of state and did a remote consult with an expert surgeon. The surgery is necessary.

 

[pellicle]

...
BTW, in a few months ago, when the CT showed the aortic aneurysm had grown, I told him I believed it was probably time to consult with a surgeon. His response was, "Oh you don't want that surgery. It's a terrible surgery."

I'm sorry ... like ... he said you don't want to have surgery to save your life?

did I miss something in translation or is your cardio an utter moron?

 

[pellicle]

on the topic of a trial, I suggest you see if you can find an amenable physician, see if you can get prescribed warfarin for say Deep Vein Thrombosis prophylaxis then go plonk $500 down on a used Coaguchek XS from ebay and $150 worth of strips (that'll be about 24 of them) and start taking 1mg daily and test weekly ... warfarin (coumadine or whatever) is really inexpensive. Don't get the costco stuff as I've heard too many reports of that being irregular.

again, if you want, contact me via PM on the forum and I'll assist you with self monitoring

its the only way to be sure its not going to cause you difficulties (which I feel it wont)

 

[Paleowoman]

Hi Catie - why not wait and see if you're going to have warfarin for sure. As you've seen, others on here who have bioprosthetic valves have not been prescribed warfarin. One of the reasons I went with bioprosthetic is so I wouldn't have warfarin. Of course some people have to have warfarin regardless of their valve, or even if they are not having a valve replacement at all, if they get conditions such as AFib or a stroke, but then you'd have to have warfarin whether you want it or not so you would cross the side effects bridge then, crossing it sooner might cost you a bit !

 

[Catie]

Thanks for all your replies. : )

Pellicle, no. I was astounded, really. Current cardiologist inferred I was acting hastily and wanting a surgery I didn't need. My chart was noted that I'm interested in early intervention. In actuality, I want the surgery on-time so I don't suffer a dissection. I no longer have confidence in him.

I could deal with an anticoagulation-monitoring clinic short term, if I end up doing a trial. Thanks again for your offer to help, Pellicle. I'll definitely take you up on it, if I need to.

Paleogirl, it's true that anticoag therapy could come up whichever valve I get. This issue is significant in my mind and I'd like to get clarity ahead of valve choice and surgery.

Thanks for bearing with me while I process. I still have three questions I can ask the surgeon who did my long-distance consult and this issue will be one of them.

Maybe this is foundational, in addition to the super-sensitive stomach: my history of gastritis and stomach/esophagus erosions. No ulcer ever diagnosed and no known bleeding. But I wonder whether anticoag therapy be contraindicated for me? I also no longer can take proton pump inhibitors and H2 blockers, the medications that are used to heal these conditions, should they flare up.

 

[Paleowoman]

Hi Catie - whatever surgery you have and wherever you have it, make sure the cardiac surgeon and medical team you are under know exactly what problems you have with certain medications. Before my AVR there was a pre-admission form I had to fill in where I wrote down important medical history and what meds I could not take. There was then a pre-admission appointment at the hospital where I had blood tests and saw one of the nurses who would look after me on admission, again went over my medical history etc.

 

[Catie]

Oh, absolutely, Paleogirl. Thanks. Yeah, that has to happen. If they start giving me oral meds, they will set me on fire.