Why am I so afraid of this?

[karenm]

Hi All,
It has been a while since I was on valvereplacement.com. As a little history I am a congenital heart patient with tetrology of fallot. I got a fancy new pulmonary valve in November 2004 along with a maze and a patch. Since the surgery my atrial fib has turned into a persistant atrial flutter and the drs are urging me to anticoagulate in order to reduce my stroke risk. This is not a new story.

I am now so afraid of strokes that I take two aspirins a day (I'd take more if I thought that it would help) and am trying to clean out my house so my son will not have to do it while he is grieving my untimely death (I am 46). So the stress of this has moved past the normal and bearable into the absurd.

So why am I resisting? The doctors seem to be well intended, but I still feel like I am being given a recomendation based on research done on people that have nothing in comon with me. My arythmia is due to my congenital problems, not aquired heart disease. My other risk factors are very low. I have a well deserved and long standing fear of needles ... so the idea of willingly driving one hour each way to have someone stick me with a needle up to three times a week is more than I can bear. I have poor eating habits and can not cook. Having a low sodium diet has been more than my limited skills can handle so now I just eat cheese, crackers and whatever fresh fruit I can find ... unless there is cookie dough in the fridge! I suspect that this is not the anti-coagulation diet.

But perhaps as much as all the above, it it the realization that if I am on a serious monitoring and testing regimen, I have a chronic and dangerous health concern. Until this point I have always been a "heart patient" but beyond that I have been able to live my life as I wanted (no, I did not want cocaine or cigarettes which were no-no's.) This anti-coagulation routine seems a lot like the hoops and hurdles that my diabetic friends must manage and I don't want to be forced to count, weigh and pay attention to everything that I eat and drink. I also want to be normal - just like I wanted to do all the playground games I was kept from when I was sitting on the bench in third grade.

So what do I hope for from you ... the reader? I hope that someone else will say that they understand. I hope that someone that has really walked in these shoes (unlike my drs) can tell me that it will all be ok and the loss of freedom and the distruction of my positive self image will be worth it in the long run. I want to know that the scare of a stroke really will go away if I take this life altering and serious step into chronic illness. Anyone able to say these things honestly?

I have the prescription and the anti-coagulation clinic folks will call in the next few days to set up my information and they hope enlistment meeting. At this point I want to not answer the phone and just never report back to the cardiologists. If only I could sleep nights ... or my son was old enough to dance at his own wedding!

Thanks for reading my pitty party.
~Karen

 

[catwoman]

Karen:
I understand your feelings -- believe me.
When you're on the outside looking in at anticoagulation therapy, it seems like a very strange animal. Which it is, to some degree.
I too hate needles. (I have to steel myself when I give my own cats a shot or give fluids subcutaneously.) My PCP has a CoaguChek and I got used to those fingersticks and they weren't too bad. So I decided to get my own PT/INR machine. First time I had to stick my finger was hard, knowing I was going to inflict "pain" on myself. Heck, it wasn't bad at all.
I don't weigh everything I eat and drink. I eat something green pretty much every day -- tonight we had grilled salmon, baked sweet potatoes and, instead of our traditional salad, broccoli spears. Some of us here don't eat much in the way of green stuff.

If you have arrhythmia problems, warfarin is probably the best thing for you. Aspirin may not work in the way that warfarin does. And you sure don't want to stroke out. I'll dare to say that warfarin users who home test have far fewer problems with INRs and strokes than all others.

Remember: You can replace blood cells, but not brain cells. That's our motto here.

 

[Dennis S]

Hello Karen, nice to meet you.

Hello Karen, nice to meet you.

I am an early to bed, early morning guy, and definitely not at my best this time of night. But I read your post, and think you might appreciate some responses before going to bed, even ones from a guy as weary as myself. You have a great sense of humor, and I can already imagine how you will laugh & the stories you will tell on yourself once you find out how easy this whole thing is. I live 80 miles from the nearest Dr. I was able to get my own machine for self-testing, and after a little bit of reading I have been very comfortable using my test results & the knowledge gained (mostly from this site) to manage kmy own coumadin dosing. We are all going to have various medical conditions as we age, and you have to admit that there are many things worse than being able to handle the whole thing from the comfort of your living room.

It is a big thing for me to be as honest as possible. Often I have simply said a prayer for someone rather than type up a well intended message that I know minimizes a problem. So, please believe me-this is not a big deal. I have only one suggestion-it is a lot easier if you have someone who can help you with the home testing. If this becomes important, send me a message & I will forward the 1 paragraph suggestions that I got from al Lodwick. I hope you will come in and join the party with so many of us. Besides, if you don't, everyone who cares about you will start yelling at you. And we all care about you. That is why I decided to stay up past my bedtime to finish this post. Just pickup the phone & get going. I gather you are a mother-and you have climbed the mountain of heart surgery & strolled down the other side-this is going to be a piece of cake once you get started & get used to it. I am going to stay up an extra 15 minutes in the hope you will read this post & promise you will just say YES to the most important medicine you can take.

 

[Lynlw]

Hi All,
It has been a while since I was on valvereplacement.com. As a little history I am a congenital heart patient with tetrology of fallot. I got a fancy new pulmonary valve in November 2004 along with a maze and a patch. Since the surgery my atrial fib has turned into a persistant atrial flutter and the drs are urging me to anticoagulate in order to reduce my stroke risk. This is not a new story.

I am now so afraid of strokes that I take two aspirins a day (I'd take more if I thought that it would help) and am trying to clean out my house so my son will not have to do it while he is grieving my untimely death (I am 46). So the stress of this has moved past the normal and bearable into the absurd.

So why am I resisting? The doctors seem to be well intended, but I still feel like I am being given a recomendation based on research done on people that have nothing in comon with me. My arythmia is due to my congenital problems, not aquired heart disease. My other risk factors are very low. I have a well deserved and long standing fear of needles ... so the idea of willingly driving one hour each way to have someone stick me with a needle up to three times a week is more than I can bear. I have poor eating habits and can not cook. Having a low sodium diet has been more than my limited skills can handle so now I just eat cheese, crackers and whatever fresh fruit I can find ... unless there is cookie dough in the fridge! I suspect that this is not the anti-coagulation diet.

But perhaps as much as all the above, it it the realization that if I am on a serious monitoring and testing regimen, I have a chronic and dangerous health concern. Until this point I have always been a "heart patient" but beyond that I have been able to live my life as I wanted (no, I did not want cocaine or cigarettes which were no-no's.) This anti-coagulation routine seems a lot like the hoops and hurdles that my diabetic friends must manage and I don't want to be forced to count, weigh and pay attention to everything that I eat and drink. I also want to be normal - just like I wanted to do all the playground games I was kept from when I was sitting on the bench in third grade.

So what do I hope for from you ... the reader? I hope that someone else will say that they understand. I hope that someone that has really walked in these shoes (unlike my drs) can tell me that it will all be ok and the loss of freedom and the distruction of my positive self image will be worth it in the long run. I want to know that the scare of a stroke really will go away if I take this life altering and serious step into chronic illness. Anyone able to say these things honestly?

I have the prescription and the anti-coagulation clinic folks will call in the next few days to set up my information and they hope enlistment meeting. At this point I want to not answer the phone and just never report back to the cardiologists. If only I could sleep nights ... or my son was old enough to dance at his own wedding!

Thanks for reading my pitty party.
~Karen

karen I am sorry you are going thru this and honestly can't say i know how you feel since My son is the heart patients But i have a couple questions for you

since you have TOF are you going to a doctors that specializes in Adults w/ CHDs? and if not have you considerred it and I was wonderring if you posted and asked this on the acha forum, I know there are alot of TOFers there that are your age and older some of them are probably going thru the same things too and maybe could help you.
Sorry I couldn't be of more help, Lyn

 

[geebee]

Karen,
Dennis put it very well - once you are involved with ACT, you will chuckle at how easy it really is.
A couple of things:
1. The most you will test is once a week, not 3 times. More than once a week is useless because it takes at least 4 days for a dose to really show up in the INR.
2. You do not have to measure or weigh foods. Eat what you want and your dose will be adjusted around your diet.
3. You do not have to give up using razors, sharp knives, etc. These are no more dangerous for coumadin users than non-users.
4. Yes, any surgical procedures require some forethought but it's not a major issue.
5. ACT will help your positive self-image because you will know you are doing everything you can to make sure you do not have a stroke. You will know that you have made a choice to live.

I have been on coumadin for almost 26 years. I live a perfectly normal life, eat and drink what I want, play hard and do not limit ANYTHING. I do urge you to get on the home-testing bandwagon ASAP as this makes testing a breeze. Let us know how we can help.

 

[Karlynn]

Karen, a few of us that have taken Coumadin for years have put this thread together for people such as you. Give it a read.

http://valvereplacement.com/forums/showthread.php?t=17116

My brother-in-law had a stroke due to undiagnosed A-fib. He is now on Coumadin and fortunately has fully recovered from the stroke. He is very stable with his INR, tests once a month and eats and does what he likes. His A-Fib is the only thing that he has to deal with as far as his heart. Because you feel your A-fib is congenitally connected doesn't mean the results are any different from someone like my BIL who just has it and no other issues. The end problem is still the same - clot.

I think untimely death is the least of what you need to worry about as far as stroke. Most people think in terms of life or death, but don't give much thought to the in-between, in other words, a debilitating stroke that leaves you living much less of a life than normal and leaving your family to deal with a severely disabled loved one. There's a true loss of freedom.

I've been on Coumadin for almost 15 years. I have lived the life I want and it has been very good. I've traveled to Europe 2 times as a Coumadin user. I've raised two children from early childhood through to adulthood with all that entails with an active family and now I'm going to do it all over again with the life of my first grandchild due to arrive in October. As far as I'm concerned, Coumadin has given me the gift of being able to do all these things, and has in no way stopped me from living a full life. Attitude is everything. If you are going to see yourself as a fragile invalid because you are on medication, you will then live your life as an invalid. If you see yourself as taking medication in order to be able to live the life you desire, then you'll live the life you desire. The managing of a drug is the little stuff. Truly. Instead of thinking in terms of loss of freedom, think in terms of freeing you up. You have an arrhythmia that will cause clots if you don't take something. Taking a drug that helps diminish that concern greatly, is not a loss of freedom, but a new lease on life. If you found you were diabetic, would you refuse the treatment for that?

I apologize if I'm being too philosophical. I just spent the evening with 4 very good friends, having a few glasses of wine, playing our guitars and writing a song. It was a wonderful evening and one that being on Coumadin had no impact in my life other than the fact that it allows me to live life and do those wonderful things.

Best wishes.

 

[davidfortune]

Karen,

Do a search here on VR.com for "coumadin", "warafin", or "rat poison". You'll learn a ton. I have. While I'm not at the point of needing warafin yet (since I'm still talking valve choice and surgery date) my opinion of ACT is remarkably different than it was before I read the stories of ACT "Heart Patients" who live reasonably normal lives (other than staying up all hours of the night to blog with people they've never met across the country and across they world sharing experience, comfort and prayers).

As I started my research on valve choice I would personally have never considered a mechanical valve since I perceived "blood thinner/rat poison" therapy to be hugely lifestyle limiting and that I would have to spend the rest of my life in fear of triple blade razors, running with scissors, and sharp feline claws. The thoughtful, insightful, and sometimes humorous postings from VR.COM ACT citizens have changed my views. I'm now going to discuss the new On-X mechanical valve with my surgeon along with the Ross procedure or Edwards Perimount Tissue valve. While ACT therapy has its risks, it isn't a death (or even life limiting) sentence based on what I have heard from citizens here.

The reason for your atrial flutter is irrelevant!! Your atrium is fibrilating/fluttering - this increases your risk of stroke significantly (approximately 5 to 9 times the risk of the general population according to WebMD). Appropriate ACT reduces your risk of stroke significantly.

Sorry for your pity party. We all have them now and again, but now it is time to get over it and make the right choice (for appropriate reasonable medication) so you can be there as a "heart patient who takes coumadin to avoid a stroke so she can be there to see her grandkids grow up".

 

[karenm]

Thanks

Thanks

Thanks everyone for the encouraging words.
I can't say that I am reassured but I am very appreciative.

Dennis, I am sorry that I did not get back on line before you had to get to bed! I was playing Clue with my son ... seem Miss Scarlet did do it with the candlestick.

Lyn, thanks for the recommendation on the ACHA site. I am on there regularly and am being seem by a ACHD clinic here in Seattle. I have to confess that I was not ready to "out myself" on ACHA as a big scardy cat so I came here first to whine!

I do understand that when you get to the point of home testing (if my insurance allows it) and after the initial months the testing is less difficult. I am just busy fixating on the early stages. I have always had the attitude of a survivor, and the stuborness to be one. This fear is new and I know it is not logical. That's why I need you all to talk with to help me get past it. Oh, and I am sorry for all the spelling errors! You can tell I am upset when so many easy ones sneak through.

~Karen

 

[RandyL]

I am happy to say your fear of ACT is only do to lack of real information. Once you become informed and educated about the process you will find it is no different lifestyle than the one you are living right now except you will take a deifferent pill every morning. The coumadin pill is very small and similiar to the size of aspirin which you currently take everyday. There are no side effects and you will not even know that you are taking something different. You will have to have your blood tested but there are home machines available and testinjg every 1-2 weeks is nothing to get all riled up about. If the idea of a needle scares you the home test macine is much easier on the body, if not you can ask for a butterfly needle that is very tiny and you hardly know when they stick you. Acheck of the blood every 1-2 weeks is an easy sentence for a great life with your son allowing you to participate in anything you care to do, there are no restrictions caused by ACT, only myths of the uninformed.

 

[ALCapshaw2]

Karen,

You need to know that Atrial Fibrilation is one of the MAJOR causes of CLOT FORMATION and STROKE, regardless of the CAUSE (congenital issues included).

Ask your Cardiologist about Atrial Flutter and Clot formation. I suspect it is similar.

Testing can now be done by simple finger stick methods (similar to what a diabetic does daily). This can be done at home or by a 'modern' Coumadin Clinic. Coumadin Clinics are known to do a much better job of monitoring and maintaining proper INR than most doctors. Once you are stabilized, testing is typically done on a monthly basis.

Does your Primary Care Physician (and Cardiologist) know you are taking TWO full strength aspirins a day? This can be VERY HARD on your Stomach and possibly lead to GI Bleeding. TELL your Doctors about this practice!

If you want to see the REAL RISKS of going without proper anticoagulation, read the recent posts from (I forgot her name) who suffered a STROKE after being released from the hospital (following valve surgery) and being given too Low a dose of Coumadin. (probably in the AntiCoagulation Forum). If that doesn't change your mind about properly protecting yourself from clot formation and stroke, nothing will.

'AL Capshaw'

 

[ALCapshaw2]

The posts of interest are in the Post Surgery Forum

See "Deana Here" and "STROKE"

Then go to Al Lodwick's very informative website www.warfarinfo.com which will explain everything you need to know about living with / on Coumadin.

FWIW, I wanted a tissue valve so that I wouldn't have to be on Coumadin but the condition of my heart and valve necessitated a mechanical valve as the best choice.

Living with Coumadin on a daily basis is NOT the hassle I feared. I live in the country, push mow 2 acres, hand saw trees / limbs, and get a lot of bumps and scratches which take a little longer to heal than before but are not debilitating. I use a 7 day pill box and a 31 day chart to record all my medications. The rest of the day I don't even think about Coumadin.

Bridging Therapy with a fast acting anticoagulant (Lovenox or Heparin) is advisable when undergoing invasive procedures or surgery but is managable by knowledgable medical professionals.

'AL Capshaw'

 

[tobagotwo]

I do understand that you resent being lumped in with all those who've eaten and not-exercised their way into a heightened stroke risk situation. The only thing I can suggest is to ignore the insufferable ignorance of those who will want to "educate" you about your lifestyle, and toss their pamphlets at the door.

You don't deserve this problem. But you didn't deserve TOF, either. And I didn't deserve to have my aortic valve wrecked by a virus. Things are what they are.

The main reason that the atrial fibrillation increases your chances of a stroke is that when the heart is pumping with afib, it becomes inefficient. The blood in the heart doesn't flow smoothly and constantly. In certain areas, small amounts of blood can sit in one spot for brief periods of time.

"Resting" - not moving - allows changes on the surface of the platelets that make them "sticky," and encourage them to glue themselves to fibrin and other platelets. Aspirin help keep the platelets slippery, to an extent. Coumadin (warfarin) reduces the ability for the other things to bind to the platelets, lowering the chances of a clot being formed. Of the two, Coumadin is considered more effective.

Right now your fear and resentment own you. They're wrecking your life with anxiety, which is raising other risk factors for you. Where you are right now is not a lifestyle that you would really want to protect anyway.

You need to either go on warfarin, or determine that you will accept the heightened risk of stroke and move on. And cut back to one aspirin. There isn't any theraputic value to taking more than one, and it isn't good for your stomach.

Ask your doctor what the actual risk is for you. It seems the risks are always labeled as "five times greater" or "twice the risk" or similar, but they never say twice what, or five times what. Get a per-100-per-year percentage for your age group. Ask yourself if you can live with that risk without being a basket case. Put it into perspective by ranking it against the odds for your last surgery.

On the other side, think of people you know who've dealt with a stroke. Many people don't die from their first stroke. It's not that clean. Instead, they have their speech or memory disrupted, or are paralyzed. That is the more likely outcome. Is that one you could accept? How about your son, who would have to deal with it as well?

You need to move forward, one way or the other. It's not Coumadin or afib that's wrecking your life: it's the decision. I sincerely wish you success in determining which way you'll go.

Best wishes,

 

[terryj]

My husband is the heart patient and on coumadin. I am the diabetic and must test myself each morning. A few years ago neither of us thought we would be doing this. But, it has not changed our lifestyle at all. We love to go on gambling trips and family trips and boating trips. we do have to make sure each of us has our supply of medicines and he takes his blood pressure machine and I take my diabetic monitor. So what,if we had to buy an extra bag to carry all this. He does not test at home so we are sure to get his blood tested right before we go on a trip and according to how long we are gone he gets it tested when we get home. We are less than 3 years til retirement and we are counting on many more and longer trips in spite of the tools we have to take with us to stay healthy. He has 7 prescripions and I have 4. I don't expect it to slow us down.

 

[RandyL]

You need to move forward, one way or the other. It's not Coumadin or afib that's wrecking your life: it's the decision. I sincerely wish you success in determining which way you'll go.

Very nicely put Bob!

There is no decision, take the coumadin or pick out the color of casket you want. EZPZ.

 

[Guest]

Karen,

Aspirin may not offer any protection from a stroke in your situation.

What your post boils down to is that you fear a needle stick more than being paralyzed for life. Don't worry about dying. These strokes rarely kill, they leave you paralyzed, possibly unable to eat or speak.

 

[karenm]

You are all right of course

You are all right of course

Bob, you hit the nail on the head. It is getting to the decision that is so hard ... but it seems that the trouble is how to get me to the decision that was already been made. There are lots of factors in play (aren't there always) and so much anger and sadness. It is partially the lack of control that I thought that I had about my life and my future. I know we all have to deal with this at some time ... it is so exhausting and all incompassing.

So I made the appointment with the clinic... but now I need to take a closer look at my calendar and screw up my courage to make the appointment sooner. I'll try as soon as I can compose myself again.
Thanks
~Karen

 

[Karlynn]

Bob, you hit the nail on the head. It is getting to the decision that is so hard ... but it seems that the trouble is how to get me to the decision that was already been made. There are lots of factors in play (aren't there always) and so much anger and sadness. It is partially the lack of control that I thought that I had about my life and my future. I know we all have to deal with this at some time ... it is so exhausting and all incompassing.

So I made the appointment with the clinic... but now I need to take a closer look at my calendar and screw up my courage to make the appointment sooner. I'll try as soon as I can compose myself again.
Thanks
~Karen

Karen, I think most of us know that feeling of just wanting to take time to just get really honked off about our circumstances. I had an upsetting report one time and started crying. My husband's response was to tell me to snap out of it, things will be okay. I remember telling him "I know they'll be okay, but could you just give me a moment to feel sorry for myself. I need that right now."

We're just here to kick you in the hind end a bit when we think it needs to be kicked. We just want you to stay healthy.

 

[sue943]

As a person who has had a stroke, I can tell you that it isn't fun. Make that appointment.

 

[Blanche]

Karen:
I went through some of the emotions and concerns that you have been expressing. On June 21, 2006, I had my first meeting with A-fib. Two days later, the parametics caught an incident of A-fib on their ekg machine. The last thing I wanted to do was to admit that I had a problem. I am in good health, and except for a few problems that seem to be prevalent in folks who are about to be on Medicare. I do not have any other heart problems and have never had any serious medical problems.

I began anticoagulation therapy because of the very real increased risk for stroke for folks with A-fib. I live with a stroke survivor and have spend many hours in the company of other stroke survivors. Believe me, this is a group (stroke survivors) that you do not want to join....and the choice to protect yourself is your choice.

I know that you are scared because I was where you are just a few short weeks ago. Knowledge is power. Please do searches on A-fib and learn all that you can. Listen to the people here who truly do understand your situation. Your biggest problem now is not having the information that you need to make an informed decision.

If you think I can help, let me know.

http://www.a-fib.com/Overview.htm

http://www.hrsonline.org/media/facts_a-fib.asp

http://www.americanheart.org/presenter.jhtml?identifier=4451

Blanche

 

[ALCapshaw2]

Karen,

I'd like to address your "fear of needles".

I had a couple of bad experiences with needles as a child.

After those, I decided it was best to close my eyes or look the other way and let the 'target area go LIMP'. I would tighten my OTHER fist or grit my teeth but the target was kept loose. By not looking, I never knew exactly when the needle was coming so I didn't flinch.

I still don't care all that much for needles. Some of my veins tend to roll also. SOME technicians know how to deal with rolling veins, others don't.

I've also learned to ask for the SMALLEST NEEDLE they can use OR a "butterfly" with is more like a mosquito bite. With those tiny needles, I've even come to PREFER to have the (prominent) veins in my hands stuck rather than my (overused) arm / elbow regions. I know, it sounds GROSS, but for me it's actually easier and less uncomfortable. It's all a matter of what you get used to. "Mind over Matter". You CAN do it!

By the way, I couldn't find what TYPE of valve you received for your Pulmonary Valve Replacement. Please enlighten us.

'AL Capshaw'