Coumadin noob - lifer - factor V

Am 38, male, caucasian, and had a martial arts accident that caused a clot in the back of my left calf/knee. It apparently broke off and went to both lungs.
After some additional testing, looks like I'm that "Factor V" thing (inherited from 1 of my parents - having them tested since they have kids with other former spouses).
Things I've noticed so far (started taking in mid December):
* a LOT more tired
* tingling in hands
* pain in the armpit (like I've been "knuckle punched" in my armpit)
* more cold than I used to be (in the extremities as well as in the core)
* weight gain
* anxiety levels are very heightened when ANYTHING doesn't feel right, since blood issues could be I guess...anywhere in your body.
Are these pretty normal symptoms and what are people doing about replacing the vitamins they are missing out on since "we" can't eat Spinach, Broccoli, liver, etc..."
Thanks and I guess it's...welcome to the "new life" - glad to see something like this where someone like me can turn to for guidance as I begin this new journey.

Oh...and forgot to mention - also have stress related seizure disorders (grand mal) so they bumped by Dilantin from 450mg daily to 600mg daily, I guess because of a side effect or something.

Anyway, thanks for the forum.

Keep the faith - day by day...

I have just started coumadin 3 weeks ago and I am experiencing a lot of the symptoms you stated. I am 25 years old and I as well have factor v. I had bi-lateral pulmonary embolism also as well as one clot in each leg. I have experienced very cold or sweating, tired, feeling like I am out of it, and also continous coughing up blood. I also experience pains in my ankles and wrists and before I had no problems with this. I am so tired and feel like I can't do anything before I was hospitalized with this I was working out an hour and a half 5 times a week and now I don't feel like I could ever do that again. I am going to be lifelong on coumadin more than likely also and I am having a very hard time accepting it. I hope things get better with you and I hope the side effects lessen.

Shawn, you should never have been told that you cant eat green vegetables because you can - you just have to eat it in moderation. Meaning, you cant eat it everyday but maybe 2 days a week would be fine. The problem is when they tell you to change your diet, they are regulated your coumadin against something uncommon for you- they should have told you not to change anything - and then - they should have regulated your coumadin around your NORM. So tell your doctor you would like to have your INR checked weekly while you are changing your diet back to normal eating. The only time you need to limit green vegetables is if for some reason that cant get your INR in range. I have managed over 600 patients and only had 1 patient I had to limit greens on. Hope this helps and good luck

Sarah, first of all, how long have you been coughing up blood? That is not good and you need to notify your doctor right away. Being on coumadin will enhance this - if you have a weak blood vessel the coumadin may allow it to bleed easier. Have you had an endoscopy or do you know what the blood is from? Do you notice (I know this sounds gross but) any dark stools? Please do me a favor and contact your doctor tomorrow.

Laurie wrote:

Shawn, you should never have been told that you cant eat green vegetables because you can - you just have to eat it in moderation. Meaning, you cant eat it everyday but maybe 2 days a week would be fine. The problem is when they tell you to change your diet, they are regulated your coumadin against something uncommon for you- they should have told you not to change anything - and then - they should have regulated your coumadin around your NORM. So tell your doctor you would like to have your INR checked weekly while you are changing your diet back to normal eating. The only time you need to limit green vegetables is if for some reason that cant get your INR in range. I have managed over 600 patients and only had 1 patient I had to limit greens on. Hope this helps and good luck

Thanks for the heads up Laurie. Being new I'm guessing they're still trying to keep my within my 2-3 range (got a 2.6 yesterday so I'm back to weekly - was daily last week...that stunk). Yeah, when I went from 3.2 down to 1.7, they had me double up, gave me a shot and the next day it went down again to 1.6. Doc was asking what I had for lunch/dinner - told him "wings for lunch, taco's for dinner" (I don't have the best diet regimen)- he went..."ahh..lettuce ", but I told him there was no lettuce on the taco's. So...don't know if he's just gun-shy about it all what...

Guess when they have a "steady state" for several months they will probably tell me to chill a bit on the rules and regulations.

For now they said:
* Can still do martial arts but with only light contact.
* Can still hit the heavy bag, but wear gloves and watch knuckles to make sure you don't break the blood vessels.
* Jog but no hard running, bike but no racing, swim but no diving.
* Lift weights but don't go throwing 300 on the bench, holding your breath and bursting blood vessels in the brain.
* Guardian Angels...well...they said that's up to me b/c of what might happen in a street confrontation - still mulling that one over.

And honestly, the one that hurts the most (from a "giving back" perspective)...as a coumadin patient I can no longer donate blood.

Anyway, thanks again for this awesome forum. While it's a shame people are afflicted with this, at least there's a "voice" for what we are going through so as to hopefully help each through the rougher times.

-Shawn

Laurie,

I have told my doctors time and time again. I think I am going to have to find a better doctor away from Huntington. I get different stories on everything. I don't know what else to do. When I went originally they said I had pneumonia a month ago well it was really PE's and there was a pain in my kidney region on my right side that took me to the ER originally anyways that was the same pain I had last night I went back to the ER and they have enough nerve to tell me I pulled a muscle? They said the pain was from the PE's but I also have necrosis on the right side so they could also cause some pain in the flank area on that side. I also have extreme chest pain so they did an EKG but did not see anything. I have not had dark stools but at one point there were traces of blood in it. I am so nervous and at this point I just think that I am being paranoid. Thanks so much.

Sarah

Shawn, your doctor doesnt sound like he knows what he is talking about. At 1.7 - you shouldnt have been doubled up and you shouldnt have gotten a shot -- what was the shot, I have never heard of that. This is how to figure it out.... on the day you got the INR of 2.6 -- look back and write down the last 7 doses of coumadin you had "prior" to that INR, including the shot and what it was. This is how you calculate approx how much coumadin it will take to have an INR that is in range :) If you do this, you will be able to figure out your own doses and learn if your doctor is managing you correctly :) I will teach you and YES you can eat greens -- like I said in moderation and it wont effect your INR.

Also -- My friend Angela on this forum will find you - she is a martial arts expert and has been on coumadin for quite some time and will share with you what is "safe" for you to do. I dont believe all doctors have true understandings of how hard you guys "train" :)

Angela...... Shawn needs you :)(she will answer you on that one)

Sarah, I do recommend you find another doctor. How can they "diagnose" you without running a battery of tests first. I am most concerned with the coughing of blood and the chest pain. I understand why they did the EKG - rule out heart attack -- BUT I dont understand why they stopped there. Why didnt they do a CT scan to check your lungs - your chest pain could be coming from your lungs. Did you tell them about the blood you are coughing up? Sarah, never give up , there are doctors who will take the time to figure it out and help you. Have you seen a Pulmonologist? That is what I recommend you look for first. Keep in touch and update us on how you're doing.

Laurie,
They did do a CT scan but they didn't do anything to see about my kidneys which was the area that was hurting. I did tell them about coughing up blood and everything but they didn't seem to be concerned. I haven't coughed up blood for a couple days but if I do cough it is blood. I have seen a pulmonologist and when I got out of the hospital he wanted me to stay the day I left but the hospitalist said I was fine to go home and I don't think I was. My level was 1.9 when they sent me home but in the hospital I was on shots and coumadin. I am now just on coumadin and my level was 1.45 last week and 1.47 this week. They at first told me not to increase my meds but I thought I needed to be in between 2-3 and then they called back and said up it to 8mg. I just feel so frustrated that everyone that I talk to tells me different things. I have an appointment with a very good hematologist the middle of march so hopefully he will have some answers for me. Thanks so much I love being able to talk to people about this it does really help me understand more and make me feel better. Thanks so much!

Sarah, you already have more of a clue than your doctors. I would also recommend you look for a Pulmonary doctor-- and yes you are right they should have increased your coumadin at least for 2-3 days and then checked to see if it was bringing your INR up. The problem with some doctors is that dont want to take the "time" to adjust coumadin so they dont order the INR's like they should. You see, if they order an INR, they HAVE to do something about it. You need to start demanding "better" care. If you feel you should have adjustments in your coumadin or have an INR sooner than they order or even further testing - you need to get up on your high horse and tell them :) Its your life Sarah - and YOU get to be the boss - dont ever let anyone try to take hope or your health away - you know your body better than anyone else so YOU get to be in charge. We on this forum can teach and learn from one another - so that all can live healthier and happier lives.

Laurie,
Thanks so much. I love the support system this site gives everyone! I am getting my appointment moved up and the hematologist will do more for me if not I am going to go to a more well known hospital and get care there. Thank you so much!

Appreciate the advice, and look forward to Angela's as well. Am a Guardian Angel as I had mentioned and quickly getting flack for wanting to continue..."do you really care about your family", "what if something happens while you're out there"...all valid arguments I'll agree, but it's just not my nature to sit idle and let bad stuff happen, "so I don't get hurt".

With the nature of today's economy, things will get worse before they get better, and we need all the help we can get out there in the streets...

Went to the punching bag this weekend (with gloves on) and don't see any purple in the knuckles...that's a good sign.

That said, Angela - do I have hope for survival or...throw in the baret?

Hello Shawn,

Sorry, didn't catch your posting earlier. And yes, I am an avid martial artist, have been for 25 years and I hear you about not wanting to sit still.

When I was first started out on coumadin, I had no idea what that meant and then when the doctor started explaining, I stared at him like he came from outer space. What on earth was he thinking??? He might as well have sentenced me to life long prison!

But then as reality set in, so did common sense, lol. Martial Arts is so much more than trying to bash each other! Ok so no sparring, no breaking (Laurie, don't read this, snicker, I did do some breaking a couple months ago but it wasn't the dangerous kind) but I can do basics, kick the bags, do forms (or katas), and so forth. See, you can do a full on martial arts workout still!

As far as light contact is concerned, I would advise against even that, from my personal experience. You see, I too thought it wouldn't be a big deal, right? Wrong! One time I got hit in the kidney area, and I didn't even think too much of it - I mean, it barely hurt. But a couple hours later I had bright red blood in my urine, for a day and a half. No other reason than getting hit for the blood, by the way.

So Shawn, please don't do it. I know its tempting - it was for me too. But it really isn't worth it. What if you get hit in the head. Sorry to be the party pooper, instead of focusing what you can't do, go out full force on what you can do!

Be careful especially kicking heavy bags, you could cause some internal bleeding as well.(Yep, learned that from experience too.) Ugh, Laurie, I guess I am in trouble, huh?

Anyhow, don't be foolish like I was. Don't take any unnecessary risks. It's fine to help people, but find other ways to do it. I happen to enjoy going to homeless shelters and help out there, I belong to a group that purchases, cooks and serves food at a local shelter a few times a year.

Anyhow, that's it for now, but if you do have questions, don't hesitate, ask them all!

I too was so happy to have found these threads and I learned most of what I know right here! And of course thank you to Laurie for being our online nurse!!!:)

I have a MySpace if you are interested Shawn, I'll gladly give you the linke and such. You can see what I love to do and I also have posted some cool martial arts video links.

Anyhow, I am rambling...happens with old age (51).
All the best,

Angela

Hello Sarah,

I too am glad you found this thread. It helps so much being able to talk to people that are experiencing the same things. Laurie is so right in her advice: take charge of your own life and your own health! If what a doctor says doesn't quite sound right to you, get another opinion! If something in your body doesn't feel right - go to the bottom of it. It took me well over 2 years to get a solution, but I am finally there! I have a wonderful husband who went to numerous doctor appointments and gave the doctors his opinions when I wasn't up to doing it myself.

Hang in there! You have a strong support group right here, and those of us that believe in God sure pray for each other.

All the best to you,

Angela

Shawn, I told you Angela would have an answer for you. Trust me, Trust her...she is very experienced and wouldnt give you false advice. She loves the sport as much as you but understands the seriousness of "not" following the rules :) Be careful what ever you choose, just remember "some" things arent worth fighting for :) Stay on the forum and keep us updated, we wish you the best health.

Angela, I saw that you were writing about martial arts. My doctors told me I am not able to work out do you think that will change or will it have to be really low impact once I do start working out? I was doing really great loosing some weight and exercising an hour and a half everyday and now I feel like with the lack of diet I can be on and no exercise I am going to gain back all the weight I lost. Thanks so much for writing and for your concerns! I feel like I talk to my husband about it and he is very supportive also but he just doesn't understand.

Sarah

Hello Sarah,

I am pretty sure that very soon your doctor will allow you and even encourage you to start some light working out. In fact, if he/she doesn't, I would get a second opinion. My guess is that right now they might be worried that the clots in your legs might work their way up to your lungs (am I right Laurie?)

Once that danger is past, then you should be able to start working out. I started with walking, walking up and down the stairs in my house, then walking everywhere I could go. Pretty soon I was back doing Martial Arts.

A word of caution about high impact exercise.(Laurie, cover your eyes now please lol ) when I was first put on coumadin and didn't know much yet, I didn't think that jumping up and down a lot would pose any problems. I enjoy jumping into holes an jump back out of them, I guess by now you have figured out that I am somewhat of a tomboy, in addition to feeling 16 although I am really 51, lol.

Anyhow, I had some serious pain after some jumping and it turned out that I got an internal bruise from all that jumping. So please be careful about high impact sports and exercises. Walking is great, running is great and I agree with what Shawn wrote, no marathons any extended running, swimming is great, there is so much you can still do. I think the key is to monitor yourself closely and use common sense. I still do a lot of weight lifting and as long as you don't drop the weights on yourself you should be fine with that.

By the way, I was in perfect range when I got the internal bruise.

Don't worry, you'll be back up and active in no time. I hope this helps, and wasn't too bulky to read. Hang in there....

Angela

Yes Angela you are right :) It is dangerous to do any kind of exercise when you have a DVT without a doctors permission as the clot can break lose. Also - Angela - is not very good at listening sometimes either but ..... because she has tested the waters, she knows what is not safe and what you can get away with :) Angela is my cohort...we are so much alike its not funny...she is a wealth of information but full of compassion and is an awesome part of this forum! Thanks Angela for always watching out and sharing your experiences because I dont have any of my own - your great!

Thanks so much you all! I went to the doctor this morning and I am allowed to start with supervision working out again. Eventually I can work out on my own they said but he is pretty sure right now I will over due it. Thanks so much I am starting to feel a little better now and he said I will start feeling better gradually that it will just take time! Thanks you all!