Aortic valve replacement.

I know this group is more about those who have had strokes, but I am different I had a PE (Pulmonary Embolism - Blood clot on the lung) at the age of 32 (3 years ago), and have been found to have a genetic disorder called Factor V Leiden, which

Goonas, thanks for reminding me that there are several other illnesses that require long term Warfarin (and other anti-clot agents). It would be good to think of a better name for the Group to reflect different illnesses that use Warfarin.

Warfarin is also common treatment for those suffering from Atrial Fibrillation (irregular heart-beat) which I have had for about 40 years and probably should have been treated long ago but I never complained about it because it was - and still is - virtually without symptoms.

I think it is commonly used for people that have had certain kinds of open heart surgery and joint replacements. Does anyone know more about this?

I think the key focus of the group should be the management of Vitamin K in our diet as that puts anyone taking Warfarin at risk. In this regard I have already written to the founder of myFitnessPal requesting that it includes Vitamin K amongst the other nutrients. I'll keep everyone informed of any news in that regard.

Cheers

Will

Greetings! A little more background:

I was was diagnosed with a murmur about 18 years ago. Aortic stenosis was suspected but not confirmed at the time.. Over time my energy level was dropping until in the final year, I could not stand and talk to somebody for more than a few minutes without a great deal of effort.

Ironically I could keep moving, as long as I didn't stop I was okay. Over many years, I also gained weight and was almost 60 lbs over at one time. One day I collapsed, right out of the blue, no pain etc. Just down I went.

Long story short I ended up in a major hospital in critical condition with severe aortic stenosis and wasn't even let out of bed for a time. I was told I would be dead in less than six months without surgery. The stenosis was due to a bicuspid valve.

So I ended up with an artificial valve. Warfarin is something I will be taking for the rest of my life. I need to keep my INR between 2.5 and 3.5. So I've been going down this road for a year and a half. I do okay for a time then my levels go nuts, swinging wildly as the doc changes my dosage.

I really-really dislike warfarin! But until something else is approved, that's where I am.

Oh, on the weight, I went through cardiac rehab and the day that ended I joined a local gym and worked very hard through last winter. It was at the gym I heard about MFP and after all that, I've dropped ALL of the extra weight I was looking to lose. I even reduced my goal another few pounds and am halfway to that.

It's not too often one gets a "high-five" from their doc, I did.

Now if I could get more consistent blood tests I'd be all set.

Tom

I had a stroke about 10 years ago. I was on warfarin for quite some time. No problems, but a very restrictive diet. My doctor switched me to Pradaxa and my diet choices are much wider now. Still feeling great and trying to lose a few vanity pounds.

I was on Warfarin for the first 6 months of this year - with a yoyo-ing INR that kept my dose changing weekly. I had had pulmonary emboli in January and was on Warfarin until July. - no known cause factors for the clots and no risk factors ongoing. i.e. I could get another tomorrow or never again.

The biggest risk was the 2 hours it took the pin prick to stop bleeding on the day I scored 4.5

Whilst on the Warfarin I was probably the only person of the flight to Crete who didn't need to get up and walk up and down the aisle now and again (apart from "other causes" - but that is definitely heading into TooMuchInformation territory). Whilst there my electric razor gave up and so I shaved each day VERY CAREFULLY with a disposable razor and soap [without mishap].

I am a dentist , so I treat people on Warfarin almost every day now. There is a lot of it about.
From both perspectives, that of user and of clinician, I can observe that it is no big deal as long as you (and I in my professional capacity) play by the rules.
The INR (International Normalised Ratio) is simple - all GP practices in UK are equipped (you could even buy your own - for about £500) . All I need is a recent INR - within no more than 2 weeks, but ideally a day or so - of no more than 3.5 and I can treat or have treatment that might cause bleeding without concern.

Any higher than 3.5 then a note or phone call to the patient's GP will suffice to re-balance the dosage, get a satisfactory INR and reschedule. Otherwise, e.g. in cases of Hughes' Syndrome where an INR of 4 or more may be required then referral is the answer.
However, although I can expand on this theme if any of you wish but that probably isn't appropriate for this thread.
I am happy to respond to any messages if you prefer to communicate specifics confidentially

Hey everyone! Just found this group! 4 and a half years ago I developed DVT's and several clots in both legs. I was hospitalized and subsequently diagnosed with Antiphospholipid Antibody Syndrome so I'm also a lifetime Coumadin/warfarin user now. My doctor likes my INR to be between 2 and 3 but lately I've been a little on the low side.

Nice to meet others who are in the same boat as me!

I got my first DVT at 20, and my second at 28. Now on Warfarin long-term.

Not sure how active this group is but wanted to say hello! I'm Jamie. I have been on Coumadin since 2002 (11 years this week). Went to the doctor on June 7th because something felt wrong in my leg and I suspected a clot. Doctor thought I was crazy but sent me to ultrasound to show me I was wrong. Well she was wrong I was hospitalized with DVT in left calf. Got out of the hospital two days later on my birthday. Underwent tons of genetic testing and rounds of doctors and opinions and got a diagnosis of anti phospholipid syndrome. I have the lupus anticoagulant antibody. I see a couple others here have that too. I have only met one other person with this disease. I'm on lifelong anticoagulation. Currently take 12 mg but varies 10-15mg at any given time. Check weekly at home with my Roche Coagucheck machine which is great compaired to weekly (sometimes more) digging in my veins I endured the first 10 years! My veins are a wreck from this. My INR has always been unstable even with very close monitoring and consistent diet/exercise. But I have noticed a trend that every summer when it heats up my INR goes high and I battle to keep it where it needs to be. My target is 3.4-4

I have been lucky and no stocking for me. The first couple of years I had a lot of pain in the leg with the DVT but had eased up. Strange how much havoc that plays on your nerves in the legs!! My clot was in my calf but my quad felt like it was on fire. Doc said lack of proper blood flow.

This s a great group! Are most in the UK? I'm in the USA.

I would love to test at home (I live in the mountains and its a long trip to the clinic) but the CoAg (antiCoAgulation) Clinic said they don't let people have a self-test machine unless my INR is very irregular and needs constant monitoring. It probably has to do with home-patients not being counted for funding purposes, as mentioned above.

The CoAg Clinic is invaluable. Before getting in the program (it's wait listed) regular nurses were trying to determine a dose and they'd move me up or down way too fast. Got to CoAg and stabilized w/in a month on a range of 2-3. (Get a gold star if I hit 2.5 - cute.)

CoAg told me that greens used to be considered trouble; but now they are okay, IF... As long as your use stays consistent daily, they can set your warfarin dose to cope with it. Because I love greens, they have me on a higher dose and I still hit my range.

If greens aren't automatically included in my day's meals, I add a spoonful of canned spinach at the end of the day. It's a "place keeper" and offsets my higher warfarin dose for that day. That way I have the same amount of greens every day, either as part of a normal meal or as a "place keeper". I limit my salads, vegetables or canned spinach to the same size serving every day.

I also tried to find Vitamin K on the MFP food tracker. That would have been sooo nice! Even though Vitamin K would need to be added to all the listings on MFP, it'd be nice to start. Has anyone posted the suggestion on their contact page?

Love MFP. Am recent bariatric patient and food tracking and support group are life-savers. ...probably literally.

Several years ago, my doctor interrupted my check-up and had an EKG run. It was atrial fibrillation. By stopping a routine exam and checking on a totally unrelated condition that was curious, she saved my life. Dr. Stegman, my primary, did the same thing when she found my A flutter. I am so lucky to have them!!!!!!!!!

I'd had the feeling before. Even went to the hospital where they couldn't find anything; and told me it was probably a panic attack. So for years I'd thought it was panic when actually it was a dangerous heart condition. It's hard to catch AFIB at first, it doesn't last very long and it can be gone by the time you get to a professional. So if they tell you to disregard that feeling, you may never go back and have it diagnosed for what it really is; until it's too late. I was lucky it happened when a good doctor was listening.

It would be so easy to avoid this dangerous situation:
1) Don't tell the person it's a panic attack and to ignore it.
2) If people have "panic attacks", tell them to consider possible AFib.
3) They have heart monitor machines you can wear for 48hr or 30day to see what your heart is doing. But they don't have a lot to hand out, you need an appointment for one. And it still needs to occur during that time period to register.
It would not have helped me because when my AFib started, it only happened a few times a year. Neither of these time periods would have caught it. Also, it was over so fast, there was no time to get to a doctor for them to hear it. SO...
4) Loan people a little pulseoxymeter!!!!! They are not as accurate, but can do the job. They're inexpensive - you can get a whole lot to hand out. Mine has a recording function. You can have them bring the recording back for the doctor to look at. Loan it for a year... however long for the sensation to happen again. Check them every 6mos.
Teach the patient how to use it.
A) Sit still.
Put this on your finger.
C) Hit "record".
D) Call the office.

Apologize for the epic post. But I wonder how many strokes we could avoid.

p.s. I've mentioned this to my rhythm specialist. He didn't seem impressed. Am I off base? Going to mention to my cardiologist next week.

Anyway, was afraid of warfarin. Refused to take it for AFib. Had a TIA. Changed my mind quickly. Am on it for life now; and in control (mostly). Don't want to take the new options yet because they're, well, new. Want to see how they pan out. Was told: if on them and bleeding, can't stop it with a Vitamin K shot. 'Nuf said...

Thanks for the community!

Paula