Hypercoagulation

[martysfolks]

Hi,  That is a great question!  About 5-6 years ago or longer, when I was running from doc to doc re: so many symptoms, I went into atrial fib/flutter at the hospital.  They said I needed a cardiac ablation and there would be the possibility that I would wake from the surgery with a pacemaker.  This was before I was diagnosed with S/D. There were no answers as to why I was so sick.  Woke up from surgery and immediately put my hand to my chest.  Whew!  Relief!  No pacemaker.  I was put on oral Coumadin 2.5 mg daily.  Been on it ever since.  A few years later, when my blood work came back positive for antibodies, they discovered I had a condition called anticardiolipin antibody syndrome.  The therapy for that is a blood thinner.  Back in 1991, my husband had the same thing.  Only he ended up with two strokes and a blood clot in his groin resulting in an amputated foot, plus they removed his spleen and tore his pancreas. Miraculously, he lived and was also put on Coumadin. We've been on it ever since with no more problems.  At first, you need to have your blood checked often, till they know how much you need to maintain a therapeutic level.  My level is 2.5 and my husbands level is 3.5.  Yes, we both have disorders of the immune system and are anticoagulated.  You probably should get checked.  The blood test is called INR.  After a while, you don't need too many check ups.  You get to know your body.  If you bleed too much or too little, you learn to adjust.  I have to prick my fingers for glucose.  Yes, I am a diabetic too!  So, I know when I have too little or too much blood flow.  What I don't understand is why you need heparin. They usually give you a heparin drip in the hospital if you are having surgery and can't take the pill or when weaning off the pill because you can't have anything by mouth.  Mike and I love to travel and we wouldn't be able to do it if we had to have IV heparin all the time.  Now, there is heparin you can inject into your thigh yourself.  I did this for Mike when he was preparing for surgery. But, I imagine that would make your thigh sore after a while.  Once you achieved your level, why can't you take coumadin orally?  We've done fine on the oral Coumadin dose for years.  We also take a baby aspirin.  Mine is once a week and Mike's is twice a week to regualte blood platelets.  This was a great question.  Glad you brought it up.  And BTW, that SeaBass sounded yummy!~~~~Dolores  😎  Me with my NoIR's on.  Hehehe!

[Kim]

Hey Dolores,

The self-injected Heparin is what my doctor has in mind, not the IVs.  I've also had the hypercoagulation test and tested high in 3 of the 4 categories.  Doctor wants me on Heparin ASAP, but I asked for a few months to try it “my way” first.  I have no clue why Coumadin is not mentioned, but it seems the people I've talked to that are treating, are using Heparin.

Boy, you and your husband sure have had a rocky road!  Hope you can sort things out quickly.

[martysfolks]

Maybe your doc wants to test you first on the Heparin as it is short-lived.  The oral coumadin (generic name is Warfarin) has a three day span in your body.  That means that if you take the pill today, you will reach therapeutic level on Day 3.  That is why they start the pills while you are in the hospital on a drip,or if at home, on the shots. Have you had the appropriate blood work done yet?

Anyway, yes Mike and I have had our fill of illnesses.  He was also hospitalized for Legionnaires Disease in 1979.  That is why whenever we can, we try to travel and not take life too seriously.  Life is just a breath away.  I write poetry which has been published and copywritten.  It's about life's ups & downs.  I wrote some of it during my early sick years when I wasn't diagnosed and they thought I was a hypochondriac. Yes, for a while they thought my myriad of complaints was in my head. Some was!  The neuropathogens were there too.  I am writing a book about coping with, not only the disease, but how we are treated by the medical society, family (in some cases pretty bad) and even friends.  Nobody wants to hear about your ailments or why you are not going to this and that function.  etc.etc.etc. Even had to make up excuses at work when I couldn't concentrate.  It was a relief to finally have found a name for my disease. But then all I heard is you have sclerowhat!  Never heard of it! So, they still thought I was a hyprchondriac.  It wasn't until I had lost almost 40 lbs that they thought I might be dying of cancer.  Even in our enlightened age, it is difficult to be sick and get any kind of proper help. That is why these boards are so important. I was lucky.  Mike had already been thru it.  The word “terminal” really destroyed him.  Not me, it got me mad and that is when I decided to fight back. Found you guys thru Lynne and the rest is history.   Wow!  Now you guys really know all about me.  Best to you, all.  Dolores

[Kim]

[user=111]martysfolks[/user] wrote:

Maybe your doc wants to test you first on the Heparin as it is short-lived.  The oral coumadin (generic name is Warfarin) has a three day span in your body.  That means that if you take the pill today, you will reach therapeutic level on Day 3.  That is why they start the pills while you are in the hospital on a drip,or if at home, on the shots. Have you had the appropriate blood work done yet?

Thanks for explaining the Coumadin.  I see my LLMD next month and we'll sort out the blood stuff at that time.  I'm resisting the shots mostly because of all the follow-up blood work.  My veins are horrible and I only have one that sort of half way works anymore, so getting blood from this turnip is a nightmare.  It would be the same tests with Coumadin too, I'm sure.

You're right about feeling like a medical freak.  Nobody around here has a clue about SD or Lyme so I have to travel to my doctors.  These boards are a great place to share information or just vent :headbang:, because people around here get it.

[martysfolks]

Yes, the blood work would be done about once a week when you start the coumadin, but it doesn't have to be from a vein.  A good doc or hematologist or someone with a coagucheck machine could get the results immediately from a drop of blood with a prick from a fingertip.  Much like the kind that tests for sugar in a diabetic.  When we were first diagnosed, Mike and I invested in a coagucheck machine.  It ran us $1400.00. but for us it was worth it as both of us where on it.  We started checking our own and it paid for itself in the long run.  We adjusted our medication to keep our therapeutic levels at the correct place.  It was wonderful as we were not tied down to the doctor or hospital.  Mike got his checked for the first 6 months at the UCLA hospital. first once a week, then twice a month and so on.  Then we wanted to go cross country in our RV, so we took the machine with us and moved to NY.  After a while, we got stablized.  We were told that once stable, to check it  when we get a cold or don't feel well as that could change the levels.  We were told not to eat much spinach  & green leafy's or eat too much organ meats as they contain Vit K which is an anticoagulant in itself and it could throw the numbers off.  We eat liver about once or twice a month to keep my anemia in check.  Staying well is like walking a fine line and lots of work between balancing food, medicine and the bodies ability to adjust. Now, we are so stable that we get our INR done about once every 3-6 months.  Sometime, my husband gets a little trickle of a nose bleed.  That is a sign to hold a dose or two.  If his amputated foot extremity starts to hurt, he needs to get a blood check and raise the dose a bit if his level is too low.  From 1992 to the present, he has not run into trouble, so I guess we are doing a good job.  I've been stable since the heart surgery. We never use the machine anymore, but we still keep it in the closet.  Since we have to get blood draws for other reasons, we just ask the doc to add the INR to the list once every six months.  It is always right on the mark.  For any profuse bleeding, we would definitely go to the nearest ER immediately.  So far, we've been lucky or diligent.  Check docs in your area to see if any of them have a coagucheck machine.  The lab will always send the results to a doc if you sign a release form.  Good luck with your doc and keep us in touch as to the outcome of this.  If you ever want to e:mail me privately, my e:mail is martysfolk2004@yahoo.com or martysfolks@hotmail.com.  Take care~~~Dolores

[Kim]

Thanks, Dolores, for more great information. 🙂  I did not know such a machine existed for blood checks, and I had totally forgotten about the spinach/Vit K connection.  I eat tons of spinach………..corrected, ate. :doh:  I was making a spinach pesto that I'd put on chicken, fish, pasta, etc. 😯

Also, thanks for the offer to pick your brain a little more.  That was very sweet of you.

[Maz]

[user=111]martysfolks[/user] wrote:

We were told not to eat much spinach  & green leafy's or eat too much organ meats as they contain Vit K which is an anticoagulant in itself and it could throw the numbers off. 

 

Hi Dolores,

Hope you don' t mind me butting in here. I was enjoying your thread and realised the above must have just been a typo, but just thought it might be important for others who are on anti-coagulants to know that Vit K is a coagulant (causes blood clotting) rather than an anti-coagulant (causes blood thinning).

I remembered this, because when my Mum was passing away from breast cancer a couple years ago, they couldn't do a liver biopsy as her blood wasn't clotting properly (too thin). In order to thicken it, they were giving her Vit K IVs.

So perhaps the recommendation to avoid greens or anything containing Vit K while on blood thinning medication is so that it doesn't counteract the medication (rather than enhancing it)?

Here is a link that explains Vit K's blood-clotting capabilities:

http://emedicine.medscape.com/article/126354-overview

Peace, Maz

[martysfolks]

Hi Maz,  You are absolutely right.  It was early morning and I meant to say, Vit k is a coagulant.  Spinach has Vit K.  That is why as I was explaining that we should not eat green leafy's including spinach. I put anti in there because I was tired.  To all I may have misled, I apologize.  My husband has been anticoagulated successfully since 1991 without incident. And I have been anticoagulated for several years.  We were instructed on how to use the Coagucheck machine properly and we have never had a problem.  A tired person can make a slip, especially when up all night reading posts.  Thank you for bringing my error to my attention…  I will remember that!  I am sure Kim understood what I meant.   Stand corrected……Dolores. 

[Kim]

Thanks Maz and Dolores, for the correction.  I knew what Dolores meant, but others may have been confused ~~~ after all, who would think that spinach is not the healthiest food on the planet?  The other 99% of you keep eating your spinach! :roll-laugh: 

Different note…….I was pleased to learn today that my insurance is reimbursing 90% of the Enterolab Celiac test.  Because I did this on my own without a doctor's script, I wasn't sure if they would, so that was a nice surprise.  Interesting that today is Day 4 on the gluten-free diet and my stomach hurts more than before.  A few kind folks have PM'd me and said that is normal, so thanks for the heads-up.;)

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