Sunday, June 25, 2006

Life-altering

Back in January, Tater had a blood clot in her leg. After days of nasty shots in her stomach and the beginnings of what she was told was six months of Coumadin therapy, things resumed to a relatively normal state. They've had a hard time keeping her protyme levels normal and have tweaked her Coumadin dosage many times. They finally got her leveled out and therapeutic and then she started taking diet pills. It screwed her up. Even Claritin has screwed her up, as well as spinach dip and the bell peppers in her salad one week. Basically what I'm getting at is - Coumadin therapy sux. No dark green leafies, no ibuprofen, no alcohol, no fun.

During the whole travelling back and forth to the government-run medical facility (aka, the Indian Hospital) it was suggested that she has a blood disorder. Some of the doctors she dealt with poo-pooed that idea away, others reiterated that suggestion. Well, after all these months of up and down with the INR and such, it was brought up again and finally she had the test done. The guy running the Coumadin clinic took a lot of heat for it because it's a really expensive test, but he didn't back down. And he also told them that if she tested positive that he would be testing her family as well. He obviously feels pretty strong about it.

She got her test results this last Thursday - she definitely has Factor V (five) Leiden Thrombophilia. Big name. Big scary name. Basically, she has too much of something in her blood and that makes her prone to clotting. 5% of the Caucasian population has it. It's the most common hereditary blood coagualtion disorder in the United States. Whoopdedoo. You'd think that'd make a girl feel special.

Nah, not so much.

Mom is going to be tested on July 14. I'm going to be tested on July 17th. So at least we can both fret and fuss for 4 weeks together. Oh wait. I seem to be the only one fretting and fussing. Tater's totally resigned to what Coumadin Man is telling her. Oh, not me. I am looking down the barrel of Factor V Leiden and I am Googling the hell out of it. I may even break my Google if I don't stop it.

I'm very torn. Coumadin Man has told Tater that because she has had one incidence of DVT (Deep Vein Thrombosis) under the age of 30 that she needs to be on Coumadin the rest of her life. I agree with him. Mom has already stated that if she tests positive for it she will go on Coumadin for life. I tend to agree with that as well. Mom has had two blood clots. But me.....I'm not so sure that's something I want to do. I'm completely asymptomatic. Okay, so I have a slightly higher risk for DVT and PE (Pulmonary Embolism) if I test positive, but if I can get this weight under control and watch my diet I really feel like Coumadin therapy is a bit over the top for me. At this juncture.

I want to be able to shave with a razor! I want to eat my dark green leafies! I don't want to wear a MedAlert bracelet because they don't have any that are diamond-encrusted. And dammit, I'm not done getting tattoos!! If I go on Coumadin, my tattooing days are done. To hell with the risk of death by blood clot, I want my ink!! Okay, so I'm really not going to risk my life so that I can continue to get tattoos. I might be a rebel, but I also like to continue breathing. I'm kind of spoiled to it.

*sigh*

16 comments:

Rebecca said...

Hi Diva,
A few years ago, I suffered from a DVT. After a month of injections, and 9 months on tablets, requiring blood counts done every three days for the first 3 months, the weekly after that, and also having to wear compression stockings 24/7, it finally cleared.
It is the Vitamin K, which is found in a lot of green leafy foods which adds to the blood clotting. Also with the peppers, it speeds up the rate your stomach processes food. The problem with that is the pills take about 3 days to digest through your system. Speed up the digestion, and the pills don't get their full effect happening.
A lot of people take asprin, to avoid getting clots, but that can have a reverse affect, and damage other body parts.
The easiest way to keep it in check is to drink orange juice on a regular basis, and keep yourself moving. Couch potato all day, and you increase your chances.
HooRoo
Rebecca

Stewed Hamm said...

No more tattoos, eh? You could always give Mr. Diva a Sharpie and let him have a go at it...

MrsCoach2U said...

Sometimes the not knowing is the worse part, but then again ignorance is bliss. The cliches you didn't need.... I could go on forever. But then again you may not have that much time. Just kidding! Hope your Mom is having fun on her vacation.

MamaKBear said...

Oh man...

Thinking of you!

Hillbilly Mom said...

Great Googley Moogley! At least they've found out Tater's problem, and can deal with it appropriately.

This makes me worry about the time you had your fat foot, because I kept thinking it might be a blood clot. But then you had that checked out, and it was only a fat foot.

I had a DVT when I was pregnant, but didn't know it until it went away after about a week. The doctor chewed me out. Mine was in the calf area, very painful, classic swollen leg and red hot skin. Duh! I know what it is now. I had a clot in a surface veiin another time, which the foreign doc treated with 2 aspirin a day for 7 days. All I've learned is not to sit too long at one time, and go to the doctor if I get another one.

Good luck to you and DivaMom playing the waiting game.

Jennifer said...

ugh.. and they cant get you in until july????? if you need me to cover. I will... hugs to ya'll... will the girls need to get tested???

RJ said...

crap, sorry that you guys are having to face this. I did a search there are some nicer bracelets out there...damn they are costly
http://www.jewelbasket.com/medical-alert-id-bracelets-2.html

Cazzie!!! said...

Exactly like you said Diva...just do teh right diet thingy and get some of the weight down and have regular blood testing to keep an eye on things and you should be ok. Taking coudamin (aspirin here in Australia) is the recommended therapy and if they say for you to go on it I would surely think long and hard about it. If it were me I would commence it and keep up with the diet and exercise and the blood testing. I have seen too many a young person with a PE or a DVT laid up in hospital and unable to get out in the fresh air with their family..not even with loo priveledges from the hospital bed mine you!
Being in hospital as long as I was last year I woulodn't cherish one more day as a patient :(

Cazzie!!! said...

Oh yeah, easy for me to say when I am trying to lower my weight as to avert diabetes that is rampant in my family...at least we try :)

Anonymous said...

You should have become an English Teacher then you would have ice water running through your veins and you wouldn't have to worry about this kind of thing!!! That hereditary stuff seems to only apply to bad things. We never inherit skinny butts or flat tummies or any of the good stuff!!!
You all will be just fine. Get Dr. Phil's book about losing weight and exercising. Read it and then carry it around with you wherever you go. The weight of the hard back copy should help take off a few pounds here or there. Love Cap'n N's mom

Anonymous said...

Oops!!! Forgot to give my best wishes to the mom and sis. Tell them Hey for me and I will keep good thoughts for all of you.

Love Cap'n N's Mom

CISSY said...

Diva: This is some serious stuff. That was what killed David Bloom. Good site: www.preventdvt.org. If he had known he was genetically predisposed, he would have known to take precautions and what the leg cramps he was feeling could mean.

Don't know who your sis' docs are, but some of the BEST in the country are at OUHSC -- not just saying that it's a fact. I just wrote an article about one doc who participated in the U.S. surgeon general's task force looking at the DVT. She focused on DVT risks during women's lives - pregnancy, No. 1 on the list. If you want the article and the contact, I'll email them to you. The U.S. Surgeon General's report won't be out until later this summer.

Redneck Diva said...

Rebecca, I'm not sure whether to call you Rebecca, Big Blogger or Doc! You are a veritable plethora of information! And orange juice, eh? Who knew?

Stewed Hamm, last year for Halloween Mr. Diva dressed up as a biker and Tater and I wrote all over his arms with a Sharpie, giggling while we drew, telling him it would wash right off with soap and water. Heh. That was pretty funny. It was pretty semi-permanent...I guess that could be an alternative to another tat. And I could change it when I get bored!

Mrs. Coach, OMG, your comment made me laugh out loud! Thanks for making me smile!

Mom had a great time, btw. She brought new Build A Bear outfits for the kids' bears - DisneyLand shirts complete with ears and the big gloves just like Mickey!

MamaKBear, sometimes just those words as just what a person needs to hear. Thank you, dear.

Hillbilly Mom, the doc finally decided that the fat foot was due to poor circulation, but the xrays showed no clot. Thankfully. The waiting game sucks. Especially since I have sprouted a little knot on my leg where Mr. Diva pushed me into the couch a few weeks ago in one of his WWE impersonations. I'm keeping a very nervous eye on it.

Jen, Coumadin Man wanted to test Taters kids now, but she's decided to wait until they are in their teens. The stats I've read in my many Googling sprees, say that the kids have a 25% shot of having it, too. As long as it doesn't turn out that their daddies have it....

RJ, that was probably one of the sweetest things a person could have done for me this week! Thanks for the link! I forwarded it on to Mom and Tater and they've decided that the $900 ones are a bit steep, but they both picked out a pretty jeweled one that is really no more expensive than the ugly metal ones. You're a gem!

Cazzie!!, I'm still weighing my options. I have read so many conflicting reports that my brain hurts.

Cazzie!!again, we're dodging that diabetes bullet, too. All the more reason to get the weight off now. *sigh*

Cap'n's Mom, I had never thought about that, but yeah, why can't I have inherited the long legs and big boobs from Dad's side of the family?

You know, I almost did become an English teacher. What I wouldn't give for veins of icewater now. Right now I just have the uncanny ability to hear only the screams of pain and anguish and can ignore the ones of tattling, arguing and whininess.

I carry around my Weight Watchers binder pretty much everywhere I go right now. Not saying I refer to it much anymore, but yeah, the weight is great for some mild training exercises.

I will pass on your wishes to the Mom and the Tater. Thank you so much.

Cissy, I have checked out that website, thank you, friend. I have bookmarked it and will visit again. Right now I'm so nervous that pretty much all I do is Google medical reports, lol.

We are having to go through the indians for all of this. The tests are in the thousands of dollars and I, personally, have no medical insurance period and Tater's and Mom's won't cover but a mere fraction of the cost. Coumadin Man seems to be very knowledgeable in DVT/PE/Factor V Leiden and has done some pretty extensive research on it. God must've sent him to our neck of the woods for a reason.

And yes, I would love the article, if you don't mind. Thank you.

RJ said...

I am glad the link was helpful..can't have you gals wearing just any ole bracelet!! BTW, I have just lost 60lbs. due to the dx of diabetes2 and know how hard it is to lost wt. I have been trying for 40 years to lose and keep the wt. off. One thing I have learned is if you can change one thing in your diet that takes 150 calories off a day you can lose 10-15 lbs. in a year. It really works. I gave up classic coke (sob) and the wt. just dropped off.

Chelsea said...

Hi there I was just browsing online and came across this page..and just so you know you are not alone and either is tater..When i was 16 I got a blood clot in my left leg and they wanted to amputate..and i told them to forget it..I was not over weight or anything.. I was like 100 pounds and active..okay..so between the ages of 16 and 20 i had several other blood clots..finally they ran a few tests and i was diagonsed with Factor 5 as well..yeah woop di doo..so i was like ugh..I was on the coumadin and i hated it..but i took it..and man i would go out drinking at the bar with friends and be drunk after 3 or 4 drinks which was great..didn't cost as much..got a tat most of it bleed out..so i was pissed off..got my belly button pierced didn't heal right..so i took it out..then my INRs where going all out of whack...the docs always said that it had to be between like 2.5-3 thats a pretty hard target..finally after raising my coumadin to like 32 mg it wasn't working at all and i got another blood clot..this time it wasn't in my legs or groin or anything down there it was in my brain I had a stroke at the age of 21..So then i spent a month in St Pauls Hospital in Vancouver BC..and got a really good DVT specailist from UBC Hospital..he is excellant..and I got on this program for a new blood thinner..its called Daltaparin also known as Fragmin..its a liquid and you inject it into your thigh or tummy..but there is some great advantages to it..no more INRs ...no more needles..can eat what ever the hell i want..drink whatever i want..got a tattoo and it turned out great..you heal faster..don't bruise as much..and the fragmin is instant..so i love it..

Maressa faith Austin said...

I had DVT and I passed out in the dr office. That's how I found out I had it both my legs were filled with blood clots. I have factor five lodeon. And I want a tattoo is it safe?