pureinheart Posted July 9, 2015 Share Posted July 9, 2015 ((((((((((hugs)))))))))) Phoe... if you need anything please pm me. My thoughts and prayers are with you if that's ok... Link to post Share on other sites
whichwayisup Posted July 10, 2015 Share Posted July 10, 2015 I'm glad you're home and know what's happening. Sounds like you have good Dr's. Link to post Share on other sites
Methodical Posted July 14, 2015 Share Posted July 14, 2015 Glad you didn't procrastinate and got the medical attention you needed. Hope all is well and thanks for giving an update . Link to post Share on other sites
Quiet Storm Posted July 14, 2015 Share Posted July 14, 2015 I hope you feel better soon, Phoe. Take it easy and don't feel bad about asking for help. When I had no money, someone helped me. I felt really bad for taking it, and she could tell I felt ashamed about it. She said, don't pay me back and don't ever mention this again. Just promise me that years from now, when you are secure and established, that you'll pay it forward and help someone, too. I never forgot that, and once I was financially able to help those who needed it, I did. If you accept help, you don't have to feel bad about it. Just make a promise to yourself that you will do the same for someone else, when you are able to. 2 Link to post Share on other sites
whichwayisup Posted July 22, 2015 Share Posted July 22, 2015 Any more of an update Phoe? Hope you're doing okay.. Link to post Share on other sites
Author Phoe Posted July 22, 2015 Author Share Posted July 22, 2015 Any more of an update Phoe? Hope you're doing okay.. Don't really know much as of right now... alot of confusion with my doctors, and still working on finalizing my insurance coverage. I am set up with a hematologist and get my blood drawn every week until 2016. They put in the standing order until next year and the enormity of doing that every week until next year hit me. I got my blood taken 2 days ago and am awaiting the call to see how my blood is doing and whether any action needs to be taken. Every week I'll be getting that phone call. Overall I feel okay, it's just frustrating getting used to certain lifestyle changes. Things I can't do, things I can't eat. Being treated like a porcelain doll, friends freaked out that the slightest exertion is gonna push the clot fully into my lung. I just want to not have to think about this clot inside me every single minute. I have no choice but to always have it in the back of my mind. I want to go back to feeling and thinking normally. Link to post Share on other sites
Hope Shimmers Posted July 22, 2015 Share Posted July 22, 2015 (edited) Don't really know much as of right now... alot of confusion with my doctors, and still working on finalizing my insurance coverage. I am set up with a hematologist and get my blood drawn every week until 2016. They put in the standing order until next year and the enormity of doing that every week until next year hit me. I got my blood taken 2 days ago and am awaiting the call to see how my blood is doing and whether any action needs to be taken. Every week I'll be getting that phone call. Overall I feel okay, it's just frustrating getting used to certain lifestyle changes. Things I can't do, things I can't eat. Being treated like a porcelain doll, friends freaked out that the slightest exertion is gonna push the clot fully into my lung. I just want to not have to think about this clot inside me every single minute. I have no choice but to always have it in the back of my mind. I want to go back to feeling and thinking normally. Phoe, I couldn't post during the time that you were going through the process of whether to go into the ER or not but I was SCREAMING at you in my head to go in because of this. I am SO glad you did! The rationale behind leaving the clot is that over time (weeks), typically the clot will be reabsorbed by the body. The coumadin you are on doesn't do anything to affect that; what it does is prevent (hopefully) another clot from forming. If the clot is still there months from now the chances of it breaking off and becoming a pulmonary embolism (going to your lung) are much less than they were in the initial first 4 weeks or so. Over time you may want to get a second opinion and/or see if you can be prescribed something other than coumadin so you don't have to worry about getting the INR done all the time, the dietary restrictions, etc. Regulating coumadin dosage is very tricky and there are better meds out there that don't require it nowadays. But yes, they are more expensive. Plus I think you said they are doing protimes on you (PT, PTT) rather than INR - outdated and get a second opinion. Edited July 22, 2015 by Hope Shimmers 3 Link to post Share on other sites
lollipopspot Posted July 22, 2015 Share Posted July 22, 2015 certain lifestyle changes...things I can't eat. What are the recommendations for what you can and can't eat? Maybe we could help with that. Link to post Share on other sites
writergal Posted July 22, 2015 Share Posted July 22, 2015 What are the recommendations for what you can and can't eat? Maybe we could help with that. Great idea. I just looked up 'diet for blood clot patients' and this was recommended. Don't know what your current diet is, but it's probably very healthy: Garlic Virgin Olive Oil Leafy Greens Avoid Vitamin K completely. No more than 3 servings a day of: broccoli, Brussels sprouts, mustard greens, collards, spinach, turnip greens, endive, green leaf lettuce, cabbage. And supposedly, you're supposed to limit your intake of: avocados, asparagus, prunes, peas, blackberries, blueberries, romaine lettuce and tuna. I also found this website that lists 4 foods that help dissolve blood clots. Not sure I'd eat earthworms but hey why not. http://theconsciouslife.com/foods-dissolve-blood-clots.htm Link to post Share on other sites
Author Phoe Posted July 25, 2015 Author Share Posted July 25, 2015 My Protime and INR levels became available to view online. Apparently my levels are at what would be considered normal for a person NOT on blood thinners... which makes me think I need a medication adjustment? I'm not a doctor, but from what I've read I'm too low for someone with blood clots. Doctor said they would call, never did -__- I can still feel the clot so I know it's there... but it doesn't hurt and throb the way it did before. When the doctor visited me in the hospital the first thing he asked is "Where is the vascular surgeron? Why hasn't he been involved yet? I imagine you need an angioplasty".... and now to the level where I was barely talked to when I visited the office last week and am not even getting a phone call about my results, it really just confuses me. The food I can eat is pretty much what is listed above, with a few other things I've seen thrown in depending on where you look. Pretty much if it's green, I probably need to avoid it -__- which SUCKS because I love my green vegetables. I was told not just tuna, but most fish/seafood in general is probably best avoided. Eggs and especially yolks. Olive oil. When I was in the hospital they had me on a specific "coumadin" diet. Although my first night in I was in the ICU hooked up to all these ridiculous machines that would beep like mad if I dozed off an my heartrate plummeted. I was starving, so tired, and the nurse finally felt so terrible around 4 am she brought me a turkey sandwich, pudding, juice, and graham crackers. My first morning I was quite thrilled with my breakfast! I had egg whites, bacon, oatmeal with brown sugar, pudding, juice, coffee. I was stuffed! Then came lunch. Chicken with potatoes and carrots. I don't like potatoes or carrots... and then by dinner I was being fed noodles and MORE potatoes. I didn't even look at breakfast the next morning. I was so sick and in so much pain. I don't remember what lunch was. I picked at it halfheartedly. So, I can eat chicken and beef. I can eat all grains. Dairy is alright but I do need to limit it, and avoid cheese as much as possible because it does trigger migraines for me. The veggies is where I struggle now. A typical meal would be a meat, brown rice or whole grain pasta, and a vegetable! Now, I don't know what vegetables to choose. Trying to plan out meals, grocery shop, and cook accordingly just got way too mentally exhausting. So now I've got almost nothing to eat here, because I haven't shopped. I might eat a frozen meal, a yogurt... or nothing at all. Plenty of nights lately I've just gone to bed without dinner. And a handful of times I've reached the "screw it I'm gonna eat what I want" level. Like yesterday at lunch with contact1. I ate things I shouldn't eat, and said "hey, my bloodwork is crap anyway, I clearly need a medication redose, screw it!"... naturally contact1 didn't exactly approve of this statement =/ So, I'm not eating like I normally do. My body is VERY sensitive to changes in food, sleep, etc. So not only am I on a medication that my body doesn't like, it's not getting the food it needs, and so most days I feel really crappy. And I can't even work out... this is absolutely maddening. Link to post Share on other sites
LoveMachine67 Posted July 25, 2015 Share Posted July 25, 2015 Please hang in Phoe, it will take a bit of getting used to, but you will adjust. As hard as it may be, please follow that new diet as recommended. Changes in lifestyle for medical reasons are NEVER easy, I've been there. But once you've adjusted, you'll look back and wonder what the big deal was. Hope you feel better soon! Link to post Share on other sites
Author Phoe Posted July 25, 2015 Author Share Posted July 25, 2015 Please hang in Phoe, it will take a bit of getting used to, but you will adjust. As hard as it may be, please follow that new diet as recommended. Changes in lifestyle for medical reasons are NEVER easy, I've been there. But once you've adjusted, you'll look back and wonder what the big deal was. Hope you feel better soon! Luckily, I'm level-headed enough to know that this this struggle IS indeed temporary, and in time it'll be automatic. Unfortunately, that level-headedness is being hampered by stubbornness right now. I am a creature of habit, and being forced to change my habits and routines by no choice of my own, does indeed drive me up a wall. I do like writergal's link that suggests pineapples. I can definitely snack on pineapple chunks regularly! I may have to get super detail oriented and start from scratch. Plan out every meal for the next few weeks. Write it all down and stick to it. Cook out many things in advance and store them for when I start getting in an "I hate my current food choices" mood. 3 Link to post Share on other sites
Author Phoe Posted July 25, 2015 Author Share Posted July 25, 2015 http://www.coumadin.com/pdf/Foods_With_VitaminK.pdf ^^^This is stuff I need to watch. Ridiculous. Seriously?! Link to post Share on other sites
LoveMachine67 Posted July 25, 2015 Share Posted July 25, 2015 http://www.coumadin.com/pdf/Foods_With_VitaminK.pdf ^^^This is stuff I need to watch. Ridiculous. Seriously?! That sucks to have to do at your age.. But thankfully you got yourself checked out in time, and can begin to treat it. Could have been a whole lot worse. Link to post Share on other sites
Els Posted July 27, 2015 Share Posted July 27, 2015 http://www.coumadin.com/pdf/Foods_With_VitaminK.pdf ^^^This is stuff I need to watch. Ridiculous. Seriously?! Yeah, Vitamin K interacts with warfarin/coumadin's mechanism of action, so that's why you have to be really careful with that. Also, as a side note, be sure to check in with your doc if you're taking any supplements. It really sucks, I get that, but honestly it could be worse. People with diabetes, or renal failure, or high cholesterol, etc - all of them are on restricted diets too. And I don't know about you, but IMO it would be worse to not be able to eat seafood or eggs than to not be able to eat kale and broccoli! Also, AFAIK, it's not about avoiding entirely ANY foods with Vit K, but rather just about being careful with the ones with really high content (the 1st half of the 1st page you linked, everything after that is dramatically lower), and more importantly, consistency. Warfarin diet: What foods should I avoid? - Mayo Clinic recommends sticking to 90 mcg/day for women on warfarin. That means, according to your chart, that you can take 3 cups of the 30 mcg/cup veggies. (But def still consult with your doc first, I don't know if they follow MayoClinic's guidelines). Link to post Share on other sites
Hope Shimmers Posted July 27, 2015 Share Posted July 27, 2015 It's actually all about continuity. Once you are regulated on a particular coumadin dose, the issue is that you shouldn't change your diet. So if you are eating tons of green leafies and then get regulated on a coumadin dose based on that, then you need to continue that diet. The problem really comes in when they have stabilized your INR and coumadin dose but you change your diet regarding vitamin K substantially. Veggies low in vitamin K are turnips, potatoes (I know...), corn, squash of all types, sweet potatoes, eggplant, mushrooms, tomatoes, raw cucumbers, raw iceberg lettuce, onions... and some others I can't think of now. No, nothing green. But again, you just need to be on a stable diet and not change it up once the dosage is adjusted correctly. Link to post Share on other sites
whichwayisup Posted July 27, 2015 Share Posted July 27, 2015 Cauliflower is a great veggie. Phoe, since your Dr hasn't called you, you call! Be pro active and don't let them forget about you. Keep a daily journal of how you feel each day, what you eat too, just so you have a reference. 2 Link to post Share on other sites
Author Phoe Posted July 28, 2015 Author Share Posted July 28, 2015 Cauliflower is a great veggie. Phoe, since your Dr hasn't called you, you call! Be pro active and don't let them forget about you. Keep a daily journal of how you feel each day, what you eat too, just so you have a reference. I love caulifower, but the paperwork I was sent home with did suggest to avoid it. It's only 16 micrograms of Vit K, so I could probably eat a little now and then and be fine. My friends have taken it upon themselves to be my "food coaches". They're all brainstorming separately to come up with meal ideas and plans based on my restrictions, my preferences, and my lifestyle. I think it's so adorable! I'm calling my doctor tomorrow, along with my insurance company since my bills started arriving (dear lord -__-), and need to call my HR department at work to see if I can retroactively get sick leave applied to the days I was in the hospital, because my last paycheck was cut in half from missing a week of work. A half sized paycheck plus medical bills equals a big frickin mess. Link to post Share on other sites
kenmore Posted July 31, 2015 Share Posted July 31, 2015 Hey Phoe, I'm sorry I didn't see this thread when you posted it! When I read your original post I had the same reaction most posters did, get your *ss to the hospital! I'm so glad you did and that you know what happened. A blood clot is nothing to mess with. They kill people! Hugs! Ken 1 Link to post Share on other sites
Recommended Posts