Almost one year out....AND

[Mileena46]

here is what I am still dealing with: swelling feet and legs...sometimes very bad and times not at all. I think the hotter the weather the worse I swell!

The constant ticking of my mechanical valve isn't any better....and I haven't gotten use to it...(it is still not "white noise" to me)!

I am still on every single med I left the hospital with the exception of pain meds!

I still have trouble sleeping on my left side, not only is my valve louder that way, but my heart "thumps" on that side.

My heart still has moments of jumping out of rhythm....several times a day some days for short runs, and some days I have no problem with it. I began taking the magnesium supplement again that I use to take before surgery for constant PACs and PVCs and it helps.

I gained about 20 pounds right out of the hospital that no amount of walking will rid me of.....or lack of food intake. The one diet I tried consisted of eating lots of veggies and threw my INR out of whack so I stopped doing that.

Despite all of this......I AM ALIVE! I feel good (most of the time) and I no longer take ANYTHING for granted!! I will be out of pocket on my valversary so I thought I would post now! July 16! ONE YEAR! YAY!

Mileena

 

[JeffM]

Hi Mileena,

So hard to know the cause of the issues you mentioned. And being the recipient of a tissue valve, I have not experienced the ticking nor ongoing need to regulate my INR levels. I was on coumadin, however, for 3 months and here's what I can tell you about my own experience with it: It helped me to understand what foods contained higher amounts of vitamin K, which negates some of coumadin's effectiveness. I also made note of what meds I was on that had a positive or negative effect on my INR levels. With that information, I was able to regulate my INR pretty consistently within my prescribed range and I didn't have to pay that much attention to it. I have always been an athlete, so I couldn't wait to start exercising after my surgery. For not athletes or people who aren't used to a regular exercise routine, I know it can be especially challenging. I have always consummed lots of leafy greens and cranberries and just made sure I kept my intake of these somewhat consistent. Where you probably had a problem was with the sudden change in diet; perhaps you didn't change your dose accordingly.

A couple examples of how people manage their lifestyles and meds with different results are:

My mom, who has been on coumadin for 25 years and who has a mechanical valve. She does home testing and she also has been a vegetarian for most of those years. She was diagnosed with a heart murmur as a child and not allowed to exercise. She never had an exercise routine until after her surgery at age 47. She's now 72 and she exercises regularly. She doesn't live her life like a robot but does stay pretty consistent with her diet and exercise which helps her regulate her INR level. She started having arrhythmia problems after her AVR and now takes digoxin to control it. She used to be overweight, but she made a commitment to live a healthier lifestyle and provide "a supportive environment for her expensive hardware".

My mother-in-law, on the other hand, has been on coumadin and digoxen to control her occasional A-fib and prevent potential clots for years. She is now an insulin dependent diabetic and is probably 100 lbs overweight. For some reason, according to her, most healthier foods cause her INR and blood sugar to go out of whack, her diabetes caused her weight gain and she can't exercise because the one personal trainer in the world who was any good moved out of state. Of course, the reason her INR and blood sugar levels change when she eats healthy foods is because she typically doesn't eat them until she visits us and my wife offers up healthier dishes. She normally jacks up her dose of insulin so she can counter the sweets she consumes on a regular basis so when she visits us, her insulin is usually too high. She also had a weight problem well before she developed diabetes. As many of us tend to do, she also binges on certain naughty foods. Binging is not a behavior conducive to regulating anything in one's body. In her case, she has simply never committed to caring for herself. INstead, she makes negative adjustments to her medications to copmpensate for poor eating habits and then makes excuses for why her health is bad.

Need I say which of the above examples I plan to follow?

I'm sorry if I come across as pedantic, but a healthy diet (not a fad "diet") and an exercise regime are the two best things we, as the lucky, grateful recipients of life extending medical care can do for ourselves. And I find it hard to believe that we can't, with a little patience, persistence and tweaking, make them work in conjunction with our medications. I wish you the best of luck with your challenges and mostly, the strength to stick with a lifestyle that will keep you feeling good and happy for many years to come.

 

[Ruth]

Congratulations!!

Congratulations!!

One year, woo hoo!

Have you had your thyroid checked? Weight gain that stubbornly sticks around and palpatations are both symptoms of hypothyroidism. My heart leaps around like a caged chipmunk in my chest the moment my TSH even nudges toward 3. Cardios can miss it since it's not really their gig but a good primary doc or endo can help.

Just a thought..... best wishes and congrats on your anniversary!

 

[Mileena46]

Thanks to both of you! No, Jeff you didn't come off as too strict. I know all the things you are saying is true. I also know that my diet of eating healthy foods for ONE week and keeping the same dose of coumadin caused my INR to hit bottom! It went to 1.8, and scared me so bad I just went back to way I was before and let it rise back up. I have to really talk myself into diet and exercise, so maybe the INR being too low was an excuse for me. Anyway, I haven't talked myself back into trying again....not yet.

Ruth,

I have my thyroid checked every 6 months because I am still on Amiodarone and it has totally messed with it. Last time it was checked they doubled my dose because it was still out of whack! It is time for me to test again.....then we will see how it is doing now. I think it might still be off some....but who knows? I DO like to eat.

Then there is the fact that both my belly and lower legs are swollen most every evening in the hot weather. It is also hard to do any walking exercises when you can't get your walking shoes on!

I am still happy of where I am!! Last year at this time I was in pretty bad shape!! Next year I hope to be in even better shape!!

Mileena

 

[Ross]

With Coumadin, you dose the diet you eat, you don't diet the dose. Eat like you always have and the dose will automatically be adjusted.

 

[Gnusgal]

I completely understand about the swelling feet and legs the hotter it gets! I have this problem too (but I also have CHF). Makes me long to summer in the north or something.

As for the ticking still driving you crazy, I had the same experience for a LONG time after surgery (I'm 8 years post op now). I could not understand how other people were not able to hear their ticking 24/7 like I could. But now, there really are times when I don't hear it unless I concentrate on listening. It's still there, but I guess I'm just too busy to notice. I suppose the twins could have something to do with that! LOL I hope that you will be able to tune it out sooner rather than later.

I also have issues with sleeping on my side (yet that's the only way I can sleep!). I have found that hugging a pillow is the only way I can get comfortable. I've been sleeping this way for 12 years now (since my first OHS) and I get very uncomfortable if I am not in my own bed and don't have a pillow to hug. I think that it helps me not to "scrunch" my sternum so much, thus making it more comfortable. Perhaps you can try this?

Ross is right about the diet. If you are wanting to change the way you eat, just be sure to monitor your INR and adjust your dose accordingly. Don't think that you can't eat healthy just because you're on coumadin. I actually think it is better to eat veggies consistently while on coumadin so that you don't feel like you can't indulge in a salad once in awhile. Also, there are lots of veggies that won't really do much to your INR. It's mostly the "green leafy" veggies that are high in vit. K.

Yes, it's annoying when you don't get the "magic cure" that others seem to get from their VRs. But it IS good to be alive, and I'm happy to see you realize that.

 

[ALCapshaw2]

Swelling, especially in the Lower Legs and Ankles, is often a sign of excess Fluid Retention.
Are you taking a diuretic such as Lasix (or it's generic form, Foresemide)?
It sounds like you need to be re-evaluated by your Cardiologist and/or Primary Care Physician.

'AL Capshaw'