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Old 04-14-2006, 09:18 AM   #1
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carly bishop HB User
Question HELP!! Young and may have to live on warferin!

I am 26 and i have just been diagnosed with my second DVT!! I was 20 when i found out i had Biolateral (2 clots) Thrombosis in my groin and i managed to catch them before they travelled to my lung.
Now at 26 i discovered i have another clot in my left calf.... although doctors did not believe there was anything wrong due to the fact that each time all my results have come back negative, it was purely me knowing my body that made them re-check on a deep vein and artery scan.

Again i have been on warferin and Heperin dealing with the side effects and the anger this makes me feel, however now i have to decide how my life is going to pan out.

I will be having a thombophilia screening in the next couple of weeks to see if anything genitic shows (it didn't before)then onto the specialists to decide if i want to take Warferin for the rest of my life or if i want to live without the medicine and hope my body tells me something is wrong if another bloodclot appears before it is too late.

Because i am young an i am now a mum to a young child i believe there must be some real negatives about living for so long on Warferin.......
Is anybody or has anybody had to make this kind of decision???
Do you have a view???

All views and Questions very welcome
Carly

 
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Old 04-14-2006, 05:29 PM   #2
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Mari526 HB User
Re: HELP!! Young and may have to live on warferin!

I'm sorry to hear of your problems and how it's affected your life. You know of the consequences of an untreated blood clot so at this point I think you definitely need to be on prophylactic treatment after this clot resolves.
Because you are prone to clots, I hope you are aware of ways to prevent them. No sitting for long periods of time without getting up and moving, making sure you drink lots of water to prevent dehydration and no kneeling.
There are some herbal blood thinners but I would discuss this with your MD.

 
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Old 04-15-2006, 01:11 AM   #3
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carly bishop HB User
Re: HELP!! Young and may have to live on warferin!

Hi Marie526,

Thank you for your reply!!
I have never heard of this...can you tell me more about prophylactic treatment???
When i was 20 and had serious bloodclots travelling from my groin to my lung, they believed it to be because of the pill, however i received no real after treatment investigation just put on warferin for a year and now 6 years later i have another one ....this time i have not been on the pill because of the scare!

It seems that becasue they do not know what is causing it they are leaving it all in my hands, i have recently had to have a termination because the hospital forgot to tell me my coil had moved too low and when i discovered i was pregnant i had been taking warfering for 6 weeks which had affected the baby.

As a young person it would just be nice for some real support and understanding of how this will affect me later on...if i decide to live on warferin what other affect will this have as i will be taking it for soooo long and it must have some kind of affect on my internal organs??

Soooo confused!!
How can i have faith in my doctors when both times they have told me i have nothing wrong with me??

I am lucky to be alive typing this 6 years after the serious case and i want to be able to continue with the knowledge i have made the right decision...especially now i have a little girl.

 
Old 04-15-2006, 01:55 AM   #4
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Mari526 HB User
Post Re: HELP!! Young and may have to live on warferin!

How much warfarin are you on? You must have a PT/INR test done monthly to make sure you're within the range needed to prevent clots (they may have it done more frequently at first while they are still making adjustments). I think you need to educate yourself as much as possible regarding blood clots and warfarin. As I said before, you must drink fluids to prevent dehydration (usually 6-8 glasses daily preferably water) If your blood gets thick then it's prone to clotting. Refrain from crossing your legs as this can occlude blood vessels in the leg and can lead to a clot. Ask your doctor if he wants you to wear special support hose that improves circulation and prevents clots.
The herbal supplements are something you can discuss with your doctor ( wait until this clot resolves)it's only a suggestion. You know that you need to be careful because clots are so serious.Also ask your doctor if he wants you to take EFA's (fish oils) as they can be helpful with circulatory problems.

Last edited by Mari526; 04-15-2006 at 01:57 AM.

 
Old 04-15-2006, 06:36 PM   #5
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kris1182 HB User
Re: HELP!! Young and may have to live on warferin!

I feel your pain Carly! I had my first blood clot when I was 25, I had a "mini-stroke". After tons of tests, they realized that I had Lupus Anticoagulant. I was on coumadin for about 6 years and I went off them almost 2 years ago. Unfortunately, I had another clot (thank goodness in my calf this time) and am back on the coumadin. I began taking the depo shot while off the coumadin and that is probably what caused this 2nd clot.

I have a doctor appointment in a couple weeks and I hope to be able to go off the coumadin again. I have also been reading up on Vitamin E and the fish oils. I plan to talk to my Doctor about that too.

 
Old 05-05-2006, 01:59 PM   #6
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carly bishop HB User
Re: HELP!! Young and may have to live on warferin!

Hi Kris1182,

Apologies for the non reply, i am catching up tonight!
Firstly Thank you for your post, it is nice to talk to somone who was delaing with a similar experience at the same age.

Can you tell me wht the depo shots are?

I had to use a blood thinner shot of heperain (cleaxane) for a whil after taking warferin but i do not know this Depo Shot??

I have another blood test on Monday for a Throbophilia Screening, then back to heamotology on the 16th of this month to see the outcome of the test and then decide what i wish to do as far as medication (damned if i do take it damned if i dont)

It would appear that after talking to everyone on this site i have discovered more tests that need and should be done before i have to make the decision that the doctors dont want to!!!!!

Because my results always show nothing wrong they cannot discover what is happening with me...why do i keep clotting?? They almost make you feel you are dealing with it on your own because they do not want to put their name to any decisions about me.

What a mess ay!!!

After your clot in your leg have you had another one or is everything more stable now??

Thanks for the advice and info
A strssed and confused carly

 
Old 05-05-2006, 07:28 PM   #7
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Re: HELP!! Young and may have to live on warferin!

Carly,

Actually the depo shot is a form of birth control. My doctors felt that it was safe for me to try it & shortly after I developed another clot. (There is some debate on whether the depo could have caused the clot, but I'll leave that between my doctors!) That was late last year. They had me go on lovenox (and quit taking the depo) and then onto the warfarin. No more clots, but that's probably because I'm on the thinners!

What I confuses me with your doctors is that after 2 clots most doctors want you to stay on the blood thinners long term. I know mine do and I would guess most on this board would say the same thing. I totally understand your concern about being on this long-term, but on a couple other posts, there were a few people who have been on warfarin for 20-35 years without any incidents.

Keep me posted on your test results!

 
Old 05-12-2006, 01:10 PM   #8
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carly bishop HB User
Re: HELP!! Young and may have to live on warferin!

Hi ya!

Yeah i can understand you coming off of the dept shot as i am not aloud any type of contreceptive apart from the coil, obviousley due to my clotting issue.

Tell me about it, i cannot understand why this has all been put on my shoulder, the only reason i can think is because no-one knows what is happening in my body and why my tests in the past have never showed anything, therefore they do not want to hold themselves to the decision!!!

The fact i had biolateral thrombo when i was 20 i am lucky to be alive as this was two clots travelling at the same time to my lung, so even though they class the calf clot as "less seriou" i would have thought this would be the decider for them....how wrong am i..

I had seven blood tests on Tuesday and i now know that they included some of the blood disorders mentioned on this site....however i had these when i was 20 with no results..so if this is the case again then i really think that i have no choice but to decide to take warferin otherwise i will be living paranoid about having a clot i dont know about.

My other concern is my daughter, she is only 2 but how do i know that this is not affecting her blood if i cant determine.....sorry the doctors cannot determine what is going on...it is so unfair that at 26 i have all this to think about instead of concentrating on the happiness of my family (of course i try but this istaking over at the moment).

Although i sound like a stressed and paranoid female, i do actually smile everyday at the facy i even have a child as the docs are stressing that the cas of another preganancy is "high risk" and really not a good idea.

Anyway....Tuesday is the day...keep you posted!!!
Speak soon
Carly

 
Old 06-07-2006, 12:44 PM   #9
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Cool Re: HELP!! Young and may have to live on warferin!

Hi everyone. I am being tested for Factor V tomorrow and having a scan on my leg to check for blood clots. I've had 4, possibly 5, blood clots in my right leg and groin area. I was diagnosed with my 1st DVT in 1986 at age 19. Between 1988 and 1999, I had 5 miscarriages. In 1986 I had twin boys, then in 1994, was told I wouldn't be able to carry another baby to term, because they would always be tubal. We had given up on the idea of having anymore kids, when I found out I was pregnant in 1999. We just knew it would be a tubal, but thankfully, we have our miracle. I had to choose between having the baby and risk getting another blood clot, or take heprin shots during the pregnancy and risk a miscarriage. There was no choice for me--I chose to go the entire pregnancy without any blood thinning drugs. Exactly one month to the day after my son was born, I was back in the hospital with another blood clot. He was worth it though(he's almost 7 now), but since his birth, I've developed 3 more clots. Now I will be on coumadin for the rest of my life(I'm only 39). I hate the pro-times(my arms look like a junkie), especially since I have to have them done every 2-4 weeks--sometimes 3-4 times a week. They can't get my clotting level to stay in range. I've been taking coumadin off and on since I was 19(1986). Believe me, it's no picnic to live like this. Right now I am waiting to hear back on my disability appeal, because I can't work due to the clots. Just take it one day at a time and listen to your body. If you need to rest-do it, if you need to lay down and put your leg up--do it. I went back to work after my 2nd clot and ignored all the pain I was having, and now I can't work at all. Some days the pain is so bad that I can barely get out of bed. You'll have good days and bad days, but take care of yourself first. The days I can't do anything, my 7 year old son will try to take care of me(he's so cute and helpful). He knows that the clots could kill me if they move, but he only worries when I'm in the hospital, otherwise he knows I'm ok. My husband is great help too. Wouldn't be able to function some days without him. Hope it made you feel a little better to know you're not alone with this.

 
Old 10-05-2007, 04:05 PM   #10
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Jules27 HB User
Re: HELP!! Young and may have to live on warferin!

Hi Carly,
I can relate. I had my first blood clot at the age of 19. It was in the transverse sinus in my brain and I had a stroke with left side paralysis. The whole ordeal kept me in the hospital for about a month and a half, and I had to relearn how to walk. Doctors suspected the clot formed because I was taking the pill at the time. I am no longer taking the pill and was discharged from the hospital with instructions that I would need to take warfarin for a year and a half and have INR checked every few weeks.

After seeing a specialist, I was told I needed to remain on warfarin for life because of how serious the clot was. I have now been on warfarin for 2 and a half years and would really like to not take it for the rest of my life. However, I am obviously terrified to get another clot. I am not sure about the long term side effects of warfarin. My mother is convinced that if I take it for too long I will have internal bleeding, but every doctor I've talked to tells me that is unlikely unless I have some kind of trauma. I was losing my hair in large clumps for awhile right after I started taking the warfarin, but that stopped after my body adjusted.

I have heard that there are some herbal supplements that help thin your blood, but it's much harder to regulate your INR if you take them. It may be worth discussing with your doctor though. Good luck!

 
Old 10-14-2007, 05:13 PM   #11
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Re: HELP!! Young and may have to live on warferin!

the hematologist that I worked for strongly felt that coumadin was more effective than warfarin. Warfarin is generic of coumadin. Most often the generic is just as good. For some reason he felt differently and would write the RX to be dispensed as written (DAW). Also, to regulate the INR he also strongly felt that if a patient came to him with a schedule to take their Rx at one dose on M, W, F and another dose for T, Th, Sat that this was NOT a good idea. Less regularity with this scenario. It also confused patients. More importantly I witnessed him regulate his patients regularly while maintaining the same daily doseage. This dr has been a pioneer for thrombotic disorders and speaks regularly across the country.

Last edited by thirysomething; 10-14-2007 at 05:15 PM. Reason: mis-spelling error

 
Old 10-22-2007, 03:44 PM   #12
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macguyversmom HB User
Re: HELP!! Young and may have to live on warferin!

I've been on coumadin since I've been 24. Would you rather pop a little pill everyday and have routine blood tests to be safe? Or, do you want to take the risk of another clot? I too have kiddos and I try to keep myself healthy as possible for them. I've had 18 clots and 2 PE's all while on coumadin. Don't take the chance.

 
Old 04-08-2008, 11:58 AM   #13
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jannorman36 HB User
Re: HELP!! Young and may have to live on warferin!

hi kris and carly i had a stroke when was 35,am on warferin for life.i hate being on it but would hate having a major stroke even more.i am always anxious and worried about a bleed or a clot,and i take sertraline for panic disorder.it helps.take carex

 
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