Coumadin User Survey!

[Mike From Michigan]

Dear all users of Coumadin:

Have a few minutes to take a survey?

I am facing the prospect of AVR surgery in the coming year and probably like all of you were/are, I am concerned about having to take Coumadin. I've read most of the posts and learned a lot, but what I'd like to do is to try to encapsulate the major points through the use of a survey (I am a very analytical guy!). Please answer the following questions, elaborating where necessary.

Thanks a lot!!

Mike


SURVEY

1. EFFECT OF YOUR LIFE: On a scale from 1 to 5, rate how the use of Coumadin has changed how you go about living your life (doing everyday things) with:
5 = No effect on my life (I do everything I used to do prior to having to use it)
4 = Changed how I live my life a in just a few small ways (a few minor changes were necessary)
3 = Changed how I live my life to a moderate degree (a few larger changes were necessary)
2 = Changed how I live my life to a large degree (many changes were necessary)
1 = Completely changed how I live me life by 180 degrees (I am not the same person by far)

2. LIFESTYLE CHANGES: What was the biggest and toughest lifestyle change you had to make, i.e., giving something up (playing sports, travel, eating particular foods, etc.), changing the way you used to do something, etc?

3. What is the SINGLE thing you dislike most about being on Coumadin?

4. REGULATING THE INR LEVEL: Rate the ease of effectively regulating your INR level on a scale of 1-5 (5 = Very easy, 4 = Easy, 3 = OK, but a few minor problems every now and then, 2 = Difficult, 1 = Very difficult).

5. SIDE EFFECTS: Have you experienced any bad side effects such as hair loss, new health problems, loss of sexual function, appetite changes, headaches, more bruising than you expected, bad interactions with other medications, etc?

6. BLEEDING AND BRUISING: How you experienced any bleeding or bruising problems that you would consider annoying, disconcerting, a hindrance, etc?

7. 2ND THOUGHTS: Have you had enough significant problems with the use of Coumadin that you wish you elected to go with a non-mechanical valve instead to probably avoid the need for this drug?

8. MISINFORMATION: Were you greatly (and unfortunately) surprised about a particular downside of taking Coumadin? Do you feel you were adequately informed about the side effects, testing requirements, etc. of taking Coumadin?

9. TOTAL EXPERIENCE VS. EXPECTATIONS: All in all, has your total experience with Coumadin been better then expected, as expected, or worse than expected?

10. OTHER COMMENTS: Please list any other comments not covered.

 

[Karlynn]

Here y' go Mike.
1. 4
2. I had no major life style changes. I'm not an athlete. I walk and weight-lift some
3. Having to order the darned prescription from the mail order place my insurance requires.
4. 3 - my INR has never been totally stable, but it hasn't been hard to manage. I home test - that's hugely convenient.
5. No side effects for me
6. I was a banana before Coumadin and nothing has changed, or become worse.
7. I've been on Coumadin over 12 years (since the age of 32) I haven't had any times I wished I wasn't on it (other than wishing I never had heart problems to begin with). But I haven't had any need for surgeries or procedures that required me to go off it yet.
8. I've always tried to keep myself informed, rather than relying a lot on the doctors (God bless Al!) If I hear something that sounds wrong based on my knowledge, I check it out before believing it.
9. Over-all experience. My St. Jude valve saved my life and let me live to see my children grow up (they were 5 and 7 when I had my surgery) Being on Coumadin is a small price to pay for my kids having a healthy Mom. I'm glad they didn't put a tissue valve in me because it most likely would have meant additional surgery while I was still a full-time mother, not to mention the decline in health before the need for replacement. I didn't want to steal any more time from my children.

 

[Birky]

survey

survey

1. #4

2. Eating green stuff and watching what I drink and eat plus a lot of medications do not go well with Coumbadin.

3. Blood tests and bruising

4. #3

5. Bruising

6.When I get a cut it takes a little longer time to stop and the bruising.

7.I didn't have a choice and woudl rather be on coumadin than a 2nd surgery.

8.I had been taking coumadin 7 years prior to the surgery as a precaution.

9.about what I expected.

10.I have a mechanical valve so I really don't have a choice. Since the replacement I feel so much better than before that I don't think too much about the Coumadin. Just treat it as something I have to do in order to feel this good. Actually the side effects have been far and few between. I bruise very easy and sometimes my legs and arms look like I have been beaten on . It is a problem when having medical procedures done but I guess I will have to deal with it as it comes along. Thank heavens that I have good Drs.

 

[Nan]

reply to survey

reply to survey

Hi Mike, here are my responses:

1) 3 a few larger changes were necessary
2) Changes in eating habits/using herbs
3) Not being able to use certain herbs/medications to do self care as I did before
4) 3 OK, but a few minor probelms every now and thn
5) Bruising, but no big deal
6) BAD bruising when I fell down a flight of stairs.....really, really bad...but, when you fall down stairs, something is apt to happen!
7) In retrospect I would probably prefer a non-mechanical valve, BUT only if a re-surgery were not looming in the future. This may be possible now or soon with some of the newer techniques (growing your own valve and/or homografts)
8) I had absolutely no information about Coumadin prior to the valve replacement and starting to take it, just that I would have to take it.
9) It is liveable, although sometimes annoying. The testing via venous draw was difficult for me, now I have a Pro-Time Monitor and it is much easier. Being consistent with vitamin K intake is sometimes difficult for me.
10) I don't like it, but it is do-able and to me better than a re-surgery.

I wish you the best of luck. One thing to remember as you discuss your options with your surgeon is that sometimes when they get in to do the surgery they need to override whatever decision was made prior to surgery in order to best meet your medical needs.

 

[JimL]

Hi, Mike, it's good to see you post again.

1. 5.

2. Eating asparagus (but I'm going to anyway, as soon as it comes up).

3. I never took any medications before surgery.

4. 4

5. no side effects

6. no bleeding and bruising (I beltsanded my thumb in the shop today, and eventually some blood showed up, but no problem.)

7. no second thoughts.

8. On misinformation, most doctors and nurses don't understand coumadin. Fortunately, there are angels who work with it all the time and do understand coumadin, and I've got a couple of them at my coumadin clinic in Lapeer. I probably was fed misinformation, but that was a couple of years ago.

9. better

10. Coumadin is a non-issue compared to the likelihood of facing a second surgery down the road. That's my opinion after 29 months on coumadin. If I had received a valve that was expected to wear out sometime, THAT would probably have an effect on my lifestyle: I'd want to preserve that valve as long as possible to put off the second surgery. Now my valve will outlive me, and I'm fixed for life.

 

[ccrawford]

1. 4
2. going from no drugs to many and being careful re interactions
3. having to monitor
4. 5
5. some interactions
6. no problem
7. nope
8. I always read the drug data sheets and have had no surprises
9. As expected
10 - Some people seem to have much more trouble staying consistant with their INR. For the most part, when I remain careful about herbs and drug interactions, I'm stable and the effort of monitoring, for me, is worth not having to face another valve surgery.

 

[Johnny Stephens]

1. EFFECT OF YOUR LIFE: 4
2. LIFESTYLE CHANGES: Only a few small ones...wife makes me avoid ladders, won't let me use the chain saw. Nothing significant.
3. What is the SINGLE thing you dislike most about being on Coumadin? I can't take Advil. Works much better for me than Tylenol.
4. REGULATING THE INR LEVEL: 4 (Easy)
5. SIDE EFFECTS: None from Coumadin as far as I can tell.
6. BLEEDING AND BRUISING: Facial cuts and nicks have proven to be the most annoying. I had one last week that took an hour to stop.
7. 2ND THOUGHTS: Absolutely, positively, NONE.
8. MISINFORMATION: I was well informed, but sometimes I think I know more about it than some of the medical professionals I meet.
9. TOTAL EXPERIENCE VS. EXPECTATIONS: Better than expected.
10. OTHER COMMENTS: My *diuretics* cause much more impact on my life than Coumadin has.

 

[Rich]

1. 5 no changes
2. none at all but decided on my own to give up any alcohol
3. Monthly blood draws
4. 4 easy
5. Nothing changed
6. Annoying sometimes but no problem
7. No second thoughts, do not want another surgery if I can avoid it.
8. I was not informed beforehand and there was no site such as this to research it.
9. Better than expected.
10. I would say the most difficult part of Coumadin is when other invasive procedures are required.
You have a tough decision due to your age and must decide if you are willing to undergo another surgery in 10-20 yrs from now.
Personally I believe the risk goes higher with a second due to scar tissue, etc.
You will also be considerably older and who knows what other health problems you might face at that time which might complicate a second surgery.
Many have done it successully but some have not survived.
One last thing Mike, my offer still stands if I can be of any help.
I don't know where you live in our twp. ,I'm near 24 and Shelby Rd. if that helps.
I can show you first hand what a mechanical valve sounds like ( I guaranteee yo will hear nothing)

Rich

 

[Jan]

Survey

Survey

1) 5

2) No Change

3) Bruising

4) Easy, I have been pretty stable

5) No side effects

6) I have not had any bleeding, only bruising

7) No regrets, I would be more afraid of a second surgery

8) Here in the Uk we are told very little
I think it is wise to educate yourself about your medications

9) Not as bad as i thought it was going too be

10) I think I would be concerned if I ever needed to have surgery
i would be worried if I had too stop my warfarin for any
reason


regards

Jan

 

[NC-Cutie]

Mike, I am still new at taking Coumadin so I won't take the survey. Obviously, I won't have anything + to say right now. Listen to the Pros on this one, they have been in this game longer. I'm learning so much from them. GOOD LUCK in your choice.

 

[Raverlaw]

Mike,

I'm also pretty new at the Coumadin game. I'm still trying to get my INR in range and stable, but I'm only testing once a week now and will soon go longer between tests.

Taking the actual meds is not a problem at all. I know that I will have to be careful about interactions in the future, but should we all be? Chris is right - we should all read the packaging information on every drug and QUESTION our doctors as to why we need this drug, whether we're on Coumadin or not.

I'd much rather deal with coumadin forever than be worrying about how long a tissue valve will last. I'm happily ticking my way into the future with nary a care....

 

[terry40]

Hi Mike

Hi Mike

We complain about Coumadin, but it's a life saver!

Not just valvers are on this med.

Questions/answers

1. #4, only a few changes.

2. I love my green veggies, all veggies, now I have to moniter them, I still eat them ALL, but no more than 2 servings of the GREENS a day.

3. My dependency on it.

4. #3 very difficult at first, took me 6 months to get it to stay in the therapeutic range, but I've been there ever since.

5. Other medication interferes with Coumadin's action, some we have to totally avoid, and others get monitored more often, this has been hard, advil was my ache 'n pain meds, but with the coumadin it's a no-no.

6. just the normal.

7. I can only speak for myself, but there was no choice for me, my valve was imbedded with myxoma tumors, all I can say is Thank God I had the surgery when I did.

8. They only thing I felt misinformed about was how long it would take to regulate my levels, and the higher dose I need to be on to keep it there. I'm taking 9mg a day

9. It's a part of my life now, weather I like it or not, the testing doesn't bother me at all, it's more the anxiety of waiting for the results.

10. Right now there is no other medication for mechanical valvers, even the new drugs that are being tested won't be available to us for a long time.
The surgery was the worst part for me, and with a tissue valve it will most likely have to be repeated, I hope I never have to go through that surgery again!

Hope this helps,

Terry40

 

[catwoman]

SURVEY

1. 5, other than I pay more attention to body language when handling cats to avoid getting bitten. My husband does the nail-trimming detail before I bathe a cat.
I'll get out the chainsaw next week to trim trees.

2. LIFESTYLE CHANGES: I don't eat 2-3 dinner platefuls of greens for supper anymore; that was a little excessive anyway.
I need more sleep now; if I don't get 8 hours sleep, I can tell the difference.
I read menus more closely now, ask for substitutions if a dish comes with spinach, broccoli, cabbage, etc., and a salad. One server would not sub a house salad for the spinach salad with a given entree, so I changed entrees. I like spinach, broccoli, cabbage, brussels sprouts, but I can take them or leave them. No big deal.

3. Having to take pills everyday -- it's the only Rx I take.

4. REGULATING THE INR LEVEL: 5.

5. SIDE EFFECTS: Cold intolerance is all. I haven't noticed any more bruising or bleeding than before.

6. BLEEDING AND BRUISING: Nope.

7. 2ND THOUGHTS: None.

8. MISINFORMATION: Were you greatly (and unfortunately) surprised about a particular downside of taking Coumadin? Nope. Do you feel you were adequately informed about the side effects, testing requirements, etc. of taking Coumadin? Yep.

9. TOTAL EXPERIENCE VS. EXPECTATIONS: Better than expected.

10. OTHER COMMENTS: Please list any other comments not covered.
We have been granted the precious gift of life. Few people get it without some health problems. I am fortunate that I have no other health conditions. I chose the mechanical valve because my father-in-law went through 2 tissue valves in 10 years. Like Terry, I don't care to go through OHS again!

 

[Mike From Michigan]

Thanks for all the survey responses so far!

Thanks for all the survey responses so far!

Thanks everyone for all the survey responses so far, keep them coming. I have learned a lot, mainly that for most people being on Coumadin is not as bad as I feared, just something you eventually learn to live with and it does not adversely affect your life to a large degree.

I do enjoy the green vegtables and an occasional beer or two, I guess those are 2 things I'll have to be very careful with...

I guess it is primarily a decision of do I want to be cut open again (tissue valve) and all the risks associated with that, or do I want to have to deal with a bit of a hassle with the Coumadin but with the assurance of a mechanical valve and possibly never having to be cut open again. Based on what I've read, the latter seems to be the logical decision...

Thanks again and for those who haven't yet responded, the polls are still open!


Mike

 

[Guest]

Two beers does tend to move from the abstract to the precise when you take warfarin.

 

[bvdr]

1. 4

2. I am more aware of the amount and types of food I eat.

3. I think the knowledge that it is a lifelong medication that I
need for survival and that it complicates medical decisions.

4. 3 (some minor problems along the way)

5. Only a little brusing.

6. No. I did have a lot of abdominal bruising though when I was on Lovenox which I wouldn't have had to be on unless I was on coumadin.

7. I guess I have had second thoughts because I had a complication with a blood clot that has made me a little skittish. However, I believe I would make the same decision again. I was on coumadin before surgery for atrial fib and expected I might be on coumadin regardless of the type valve I received.

8. I had no surprises.

9. I think it is about what I expected.

 

[fyrfytr]

1. 4

2. Being on coumadin was one of the factors that the 3 Cardiologists gave for not wanting be to go back as a firefighter.

3. The monthly blood draws, I am hoping my ins. will cover a home testing unit for me.

4. 4, mine has been 2.8 - 3.2 so far going on 1 year.

5. Hair loss, but I didn't have much before I started taking it

6. None so far.

7. Nope.

8. I feel my PCP, Cardiologist, Surgeon and the Nurses did a very good job informing me and my wife what to expect.

9. So far I think it has been better than expected.

10. None.

Take Care

 

[Ross]

1. 5

2. I've made no changes and do not plan on making any. I'm going to live my life.

3. Being monitored by professionals that do not know how to dose.

4. If I dose myself 4, if I leave it to someone else 2

5. Absolutely none

6. None

7. Being that I nearly died after both surgeries, I have no regrets and no second thoughts about Coumadin or a Mechanical valve. This was a no brainer for me.

8. No misinformation here.

9. Better then expected

10. None that I haven't expressed a thousand times over in different threads in the forums.

 

[KristyW]

1. EFFECT OF YOUR LIFE: 4 = I watch what I eat and drink a little more carefully now.

2. LIFESTYLE CHANGES: I have given up absolutely nothing!!!

3. What is the SINGLE thing you dislike most about being on Coumadin? I hate the monthly venous draws! No chance of my ins. co paying for a self testing machine. I'll put up with it for now.

4. REGULATING THE INR LEVEL: 5 I've been very stable for almost 3 years now. There was one major spike a year ago of 8.0-9.0, but that was caused by stopping my iron tablets & changing vitamins. Once we figured that out...smooth as silk.

5. SIDE EFFECTS: None

6. BLEEDING AND BRUISING: None

7. 2ND THOUGHTS: None

8. MISINFORMATION: No, my surgeon told me that it would take a while to get stabilized, but that they (the Drs.) would adjust my dose to my lifestyle...not the other way around.

9. TOTAL EXPERIENCE VS. EXPECTATIONS: Better than expected. I expected more fluctuations in my INR than there have been.

10. OTHER COMMENTS: None

 

[RonP]

Mike:

Coumadin hasn't changed my life at all. It only changes your life if you allow it to. I've not had any bruises or problems and you won't if they monitor it correctly. They do have a hard time controlling mine and I still have to go down every two weeks and this is bothersome since it's a 1.5 hour drive one way but, other than that, there is no problem. I'd rather go and be on the safe side than not go and have problems.

Good luck on your decision.

RON P.