Why am I so afraid of this?

[Debbrn]

Dear Karen,

I am also a fellow TOF and ACHA member. I also struggle with the anger, fear and sadness. I also want to be "normal", what ever that means. I realized that my desire to be "normal" was actually a desire not to feel inferior. I had equated being a CHD patient as being abnormal and inferior. I try and remember that having TOF as my weakness is no different than some one else having a weakness in math and science. (My strong areas). It is difficult because society places more importance on physical abilities instead of mental abilities or kindness and compassion.

I also have more problems dealing with my TOF around doctor's appointments or when new things come up. It is a reminder that I do have a chronic health issue. As far as the loss of control, I take control of what I can. I exercise to keep myself as healthy as possible. I do what, when and how much I want to do when I exercise. I also realized that I needed a lower maintainance house, but I waited to move until I found the house that I wanted. I also needed a lower physically demanding job. But, I will not change until I find a job I want. I am looking early to have the most options.

I have also used counseling on and off. I will not hesitate to go if I need to again. As far as the cooking, I am not good at that either. If you come up with any good ideas, let me know.

I also have trouble "outing myself" on the ACHA website at times. I am not sure why though.

Debbie

 

[karenm]

Hey Al,
Yep ... the fear of needles comes as package with congenital heart defects! I hyperventilated on Tuesday when the EKG tech put me on a bed that had rails that raise up (we heart kids have had a lot of beds with rails), I also have terror when the little alchohol swab package to clean your skin before an injection is opened! That smell is a primal memory for me and not a good one. Yes, I have managed to take my adult self to the doctor for my flu shot every year for the last 15 years ... and yes I manage to get through it ... but the five year old inside me starts crying and looking for the exit!

And my card in wallet let's me know that I have an Edwards Bovine Pericardial Pulmonary valve (no becoming a PETA member for me I am afraid.)
~Karen

 

[tobagotwo]

I don't have the fear of needles, but I wasn't introduced to them at such a tender age, and in such unforgiving circumstances.

I do have the fear of losing control of my life, though. Like you, I zealously patrol the borders of my personal territory, staring down every interloper who thinks he knows what's best for me, snarling at the inane, generic, misinforming propaganda of Big Brother Medicine, and marking every bush and tree at the edge of my freedoms every night before resting, lest any would-be trespasser think I'm not up to my rounds.

Outside of the surgery, I'm no picnic as a patient. I have a former doctor who's a personal friend, but you'd not know it by my interactions with doctors who've wanted to put me on prescriptions without sufficient cause. I've been involved as a volunteer with a number of charities, but the day one tells me what they expect of me, or how they want me to do things, they find themselves talking to the air. I give blood four times a year, because people need it (many who've received tissue valves can still give blood), but I hang up on the bloodmobile telemarketers when they phone me to tell me when and where they think I should give blood next (why don't they call the people who don't give blood?). Et cetera.

I'm generally a pretty agreeable guy if you stay on your side of the fence. I just don't cotton to being cornered or lectured, particularly by well-meaning fools.

But there have been moments. When I have chosen to embrace a change or an intrusion, then it can go well. I am married, after all. I quit smoking years ago, in spite of the fact that everyone and the media were telling me to quit. I resented it, but it was inescapably the right thing to do. (I didn't go to any help groups or chew nicotine products, or satisfy anyone else's need to feel like they were a part of my quitting in any way, though.)

I gave over control to the thoracic surgeon and hospital completely for my valve change - at least until I woke up in recovery. That worked out well. (I did come to an agreement with the surgeon over the valve type first, though.)

All this is just leading to say that I understand your intense desire to not be dependent on something outside yourself, such as warfarin. You have to let in a lot of interlopers for this: nurses, clinicians, more doctor or clinic visits. And you have to be careful that you know more than they do, because not all of them actually understand the drug, even if they are dispensing it, dosing it, or testing for it. And most of them will try to educate you, even the ones who don't know what they're talking about.

If you've decided that AntiCoagulation Treatment is the best way to go (and I would agree that it is), the decision to actually do it needs to be one you've chosen to make yours. You marking it on the calendar was the beginning. Showing up and assessing it face to face will be the next step. You deciding that you can handle it better than the technician will be the turning point. Next thing you know, you'll be home-testing, and back in control after all.

I've not had to face this hurdle - at least not yet. But I have thought about it as a possibility in the future. We'll see how I handle it then, for all my talk now. If it happens, betcha I'll be posting and resentful, too.

I hope you find your emotional balance with it soon after you start. You show a great deal of independence, strength, and humor, and once you start it, you know you'll handle it well. You deserve to enjoy your life more than you are right now.

Best wishes,

 

[Guest]

I know that you cannot always handle these things in a rational manner. I've had 4 different kinds of cancer. I just wanted to point out from a distant viewpoint what the question bioled down to.

I have managed warfarin for at least 8 children. The characteristic that they all have is that thery do not cry about a fingerstick. They just seem to look at me as if to say, "Mister if you think that is worth wasting tears on, the try having your chest split open.".

 

[karenm]

Thanks ... again!

Thanks ... again!

Bob,
Thank you so much for articulating some of my angst. It is hard to explain this to people and not have them think that I am just a control freak! I honestly believe that this stubborn, ornryness (how do you spell that) and being able to fight another day and hold to what I know is right has kept me alive some days!
I am no good in a customer service queue when the credit card company over bills for some new policy, but I can fight ignorance and usually take care of myself.
You are right again that I need to make this my own new drug. Maybe that is the terror too. When and how will I learn enough ... since I am not taking it yet can I eat a spinach salad or will that do me in before I can even argue with the clinician! And what about going to the dentist ... will I have to fight with them now, to let me come even though I hate the antibiotics!! Do I have the energy to learn a whole new protocal and then stick up for it?
Argh.
~Karen

 

[Karlynn]

Karen, it sounds like your fears may be letting you buy in to a lot of the myth that surrounds warfarin usage. From reading your posts, it sounds like you are a strong person, so rather than continuing to tell youself that this medication is going to wreck your life, start telling yourself that it is going to save it. You have been through a lot, no doubt. But it appears you are making Coumadin out to be some big bad monster that will be worse than anything you've been through so far. It's a pill you take daily that has no side effects that interrupt your life. You test your blood once a month to once a week. You can test at home if you like. It's a finger stick. If this is going to be the worst you've been through, then you haven't been through much. (And I know that's not the case.)

Yes, you can eat that spinach salad and not die, even if you don't eat spinach regularly. The vitamin K content in food isn't enough to change your INR drastically unless you all of a sudden decide that you're going to have a huge spinach salad for lunch and dinner every day. Even then, you'll just test your blood and adjust your dose up to compensate. Most people are real creatures of habit when it comes to diet, so food doesn't impact warfarin as much as they are led to believe.

I would think that you already take antibiotics for dental work. If not, Coumadin does not cause you to take antibiotics, A-fib might (I'm not sure of the protocol there.) You don't have to stop Coumadin for dental work. Multiple tooth extractions maybe, but there are a lot of dental procedures that can be done on Coumadin. Certainly check ups and cleanings and fillings and if you have a dentist that says you have to go off it for cleanings they are telling you they'd rather see you have a stroke than have a few drops of blood on a piece of gauze. Find another dentist. I don't experience any bleeding from my cleanings. My dentist's reaction when I told him I was on Coumadin was "Oh, okay."

Start the Coumadin and just live your life. The only things you have to change are taking a pill daily (and you already take aspirin, so no big deal there) and testing occasionally. Eat what you want, drink what you want, travel where you want, do the activities you want - just live life. If you take Coumadin and feel like it is making you stop doing the things you love, then you are buying into horribly false information.

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

I'm getting the impression that you are displacing your fear and anger over having yet another heart issue on to Coumadin because it is the sign that something else is wrong. I can understand that. But understand that in doing so you are blaming the thing that will keep that new heart problem from ending or severely disabling your life. It's not the cause of A-fib, it's the solution to A-fib. It's time to show A-fib whose boss and start taking Coumadin.

 

[ALCapshaw2]

WELL SAID KARLYNN !

Sadly, patient (and physician) education about life on Coumadin has a LONG way to go to overcome the horror stories of the 'old days' (before the development of INR testing to eliminate the variability so often seen with Prothombin Time testing due to reagent variability).

'AL Capshaw'