Newbie with a DVT and FVL

Hi everyone! I'm another newbie that has happened on to this wonderfully supportive and informative board. My name is Jen, I'm 27 and live in Eastern PA. Here is my little story . .

on June 29th, 2008 I went in to the ER for what I thought may have been a tick bite on my stomach. I also noted that I had had cramping in my lower right leg. The ER Dr decided the 'bite' was nothing more than dermatitis but was concerned about my leg. The following Monday I had a doppler done on both legs and a proximal DVT was found on my lower right leg. I was sent back down to the ER and seen the same Dr that had been there the previous day. She set me up on lovenox shots and coumadin. I was also taken off my birth control at that point. They contacted my family Dr and explained the situation to them and that I was to come in for a follow up and have my blood checked (I assume now this was to check my INR). My follow up was on Wednesday July 2nd. I continued my lovenox injections and daily coumadin up until Wednesday. My family Dr spoke with me about everything (read all the reports by the ER Dr. All of my doctors all within the same medical institution and can all see the same reports). He asked me to stop the lovenox and coumadin at that point and only take aspirin with every meal. This was until they could determine if the clot was continuing to grow after removing me from the birth control and changing my work situation (I have a 9-5 desk job and I now make it a point to get up and move around more often). He set me up to have a follow up doppler (which was today) where they will check to see if the DVT has improved or grown.

On July 8th I had my yearly gynecologist exam (also a Doctor within the same medical institution) and she also read the reports on my DVT. Since she was the doctor prescribing me birth control she ordered a full blood work up to test for factor V. The results came back positive for Factor V Leiden (we now know it was contracted from my Father).

Today I had my follow up doppler and of course the clot was still present. I'm diligently trying to make an apt with a hematologist in order to get answers to my many many questions and to hopefully get on course with some sort of treatment plan. I have lost faith in my family doctor where this situation is concerned. What's so frustrating is that I could be 3 weeks into a treatment plan by now had my family doctor not stopped my meds.

I'm hoping to start a family within the next year so I appreciate any advice mothers with FVL can provide. I feel fortunate to know about my disorder going into this. Everything I've read seems to sound like lovenox shots for the duration of my pregnancy would be the best course of treatment. Again I hope I get an answer this this question and many others soon. Thanks for listening!
-Jen

Jen...I too had a bad exsperience with my primary Dr. They were treating me for almost a week I guess for a pulled groin muscle..they gave my pain killer anft pain killer, and even a steroid shot. Finally my Nurse Practitioner wanted me to have a venus doppler. Which of course showed an enormous DVT in the artery between my thigh and pelvic area in my left leg. They shipped me to the Er and I was an direct admit..I waited 6 hours and nothing..I asked what the problem was, they didnt know where I came from..Home, ER, Dr's office..or how I got on the floor, and all of my bloodwork taken in the Er..No one had even processed it. I finally at 1:30 in the morning for my first dose of heparin. I have never liked my local hospital, this is why..( I am a former Admissions Director for a Skilled Nursing Facility) I know how the medical procedures are supposed to work, and what all the medical jargon is that they talk about thinking you know nothing. My local hospital has been known for many many huge errors, some causing death. ...I am now seriously thinking of changing my hematologist, because this is the hospital that he uses, and I want to go to Florida Hospital South in Orlando..it is a much better hospital and has a very good Hemo/Ono Center. I have told my husband if I ever have to have anything done to me...that isnt imminent life threatning, and he can get me to Florida Hospital..to get me there..So I think I should set up with Dr that is based out of that hospital, that will be familiar with my background.

I know that I for one, hate making changes...but sometimes we have to do these things for the own good of our health.

So if you dont feel comfortable and secure with your primary dr..make a change.. Sometimes we have to put our self first.

Hi Jen,

Welcome to Life After DVT.
I'm glad you found us, YOUR situation I don't understand... It is very puzzling.

-June 29, was admitted at ER, the Doc was concerned about your leg but did not do a Doppler (Ultra Sound)

-June 30, you were diagnosed with DVT after a Doppler was performed
( why not the previous day?) Started anticoags and was taken OFF BC pills.
-July 2nd follow up and INR (were you told what your INR was?) and was asked to STOP anticoags.
Is this corect?

So presently, you are NOT taking any anticoagulants (wararin, coumadin...)?


But, if I'm correct, I will strongly suggest to you,that you return to the ER at the hospital and see the Doctor that started you on Lovenox and Warfarin and explain what and why your GP has gotten you to do all of this.

You have to understand that I am not a doctor,have no prior medical knowledge, all that I'm basing myself on,are my own personnal experiences as a DVT out-patient.
Everything that is suggested from anybody on this forum should be verified by a medical professional(a doctor).

Hi Jen

Nice meeting you and hearing your story. I must agree, it is very bizarre that your GP would stop Coumadin - it makes no sense. As dero mentioned, you should really go back to the doctor who first started your treatment, sooner rather than later. How are you feeling, do you still have a lot of pain and swelling in your leg?

I do not have any children so I cannot talk through first hand experience. What I can tell you is that a friend of mine, who is also Factor V Leiden and a long-term Warfarin (Coumadin) user had two successful pregnancies. Quite correct, during pregnancy Clexane/Lovenox injections are prescribed (and not Warfarin/Coumadin). As with any condition, just be sure that you are treated by specialists in the field.

I’m glad you joined the forum and look forward to hearing more about your DVT journey. Do keep in touch and let us know how you are doing.

Best,
Madeline

Thanks for all of your replies.

marica - I'm sorry to hear you too didn't have a good experience with your primary Dr. You are correct we need to do what is in our best interest. Thanks for your thoughts.


dero - June 29th was a Sunday and so the vascular dept was not open but was on call. They did call them but they didn't feel it was an immediate emergency. So they gave me lovenox as a precaution and set up my doppler for the following Monday afternoon.

On my follow up with GP on July 2nd the Dr didn't take my blood and check my INR levels (as the ER Dr told him to). He simply stopped the course of meds and started me on aspirin. I left feeling something wasn't quite right so I did call back to speak with him. He reassured me that since we had removed the risk factors (BC and my work environment) that he didn't feel the risks and hassle (he even mentioned cost as well which is laughable when it comes to my health - we also have excellent insurance so that wasn't an issue for me) of coumadin out weighted the benefits at that point.

I am presently not on any anticoagulants.


Gismo - I don't have any noticeable swelling in my leg. It also isn't terribly painful. I usually get a bad cramp that wakes me out of a dead sleep about once a week. Its terrifying. I lay there wondering if something has broken loose and is on its way to causing a PE. This usually makes my calf painful for days.


I hadn't thought to get in touch with the original ER Dr and let her know what course of "treatment" my GP had given me. I have a call into a specialist and am hoping to get an apt soon with them. If that's not possible I think I will call the ER Dr and discuss things with her. I hope to get some of this sorted out today. I have complete faith in the hospital all of these Dr's are associated with as it is one of the best in my state. I just feel my GP is set in his ways and hasn't followed up educating himself on newer blood disorders like FVL. Telling me to take 2 aspirin and call him in 3-4 weeks seems like an old school way of thought to me perhaps.

Thanks again for replies. I'm glad to have found this forum.
-Jen

Hi Jen and welcome to the group.

Please avoid pregnancy if at all possible. It is possible to have children while on Coumadin, but you'd need to find a high risk pregnancy Doc experinenced with Coumadin patients. In other words, not just anyone can handle the pregnancy. I've had a couple on my other forum go through it and they said they wouldn't recommend it to anyone, but that it was possible since they did indeed, do it.

I have been told to not get pregnant on coumadin(back when I was put on it briefly) and I don't plan to. Once someone with FVL is pregnant they are put to lovenox(bc this does not cross over to the baby like coumadin does)throughout their pregnancy and postpartum so this is most likely the course I will be following. My gynecologist is aware of my disorder and has told me I will be seeing a high risk Dr when the time comes. Many women have had successful pregnancies with FVL so I don't plan to not have children at all bc of it.

Sorry, you've been doing your homework. I'm used to those who haven't. My apology.

blebs wrote:

Sorry, you've been doing your homework. I'm used to those who haven't. My apology.

No worries. I can be a bit of a hypochondriac sometimes and having children has always been something I've wanted in my life, so I've been trying to research it quite a bit.

Hi Jen!

I just wanted to stop in and say "hi and welcome!". Thank you so much for sharing your story. I have a bit of a similar story (mine was from BC pills--because of that my Dr. won't test for Factor V), lower leg DVT, etc. (My story is DVT Diary from Vancouver).

I'm not planning on having children, so can't help you with that, but as you can see there are lots of great people that are here and visit, so I'm sure you will get good support.

Look forward to chatting and have a great day! Glad you're here!
Brenda

Jen, I have a queation, when did yo start antibiotics for Lyme? before or after you started Lovenox and Coumadin and was this anibiotic, was it your GP that prescribed it?

This may answer many other questions...


Glad to hear that you limit yourself to one clot that is great news!!!!!

Hi Dero! I started Lovenox and Coumadin (per attending ER doctor) on June 30th following the discovery of my DVT. I stopped them (per GP) July 2nd. I started antibiotics - omnicef (also per GP) after being diagnosed for Lyme on August 6th.

What are your thoughts?

Ok, my thoughts WERE...

I know that certain antibiotics do not mix with anticoagulants, I had to stop my a-coags for two weeks while I was on a-biotics.
But the dates did not match, there was a month between your GP stopping a-coags and starting a-biotics. I (as a non-medical pro) still don't understand why he took you off of a-coags...

How are things going? Your appt with the Hematologist is coming up soon(right?) Hope that does not change your plans for sept.
Have you check about blood clinics in LV, if you need bloodwork?

Most antibiotics used to treat Lyme Disease will raise your INR levels and requires extra monitoring to ensure you levels don't elevate too much.

I've been on coumadin for years and each time I find a deer tick on myself the physicians usually prescribe one of the more popular antibiotics as a preventative treatment if I don't know just how long the tick may have been attached.

According to the CDC, the more typical antibiotics used are doxycycline or amoxicillin (typical treatment of 14-21 days. Amoxicillin used for 7-10 days had only raised my INR level slightly (from 1.7 to 2.0) so the difference still had me within my target INR range. How the same medication will affect someone else will vary.

Jen, Dr. Geno Merli is an excellent physician who specializes in clotting disorders. He works at Thomas Jefferson University Hospital near Philly. Do you know if you are Heterozygous (one gene) or Homozygous (two genes) for Factor V Leiden. Though the oral contraceptives may have been the contributing factor to the deveopment of blood clots (in addition to the Factor V Leiden), most physicians will normally keep you on at least six months of coumadin/warfarin therapy before taking you off it. Aspirin is beneficial to health, however, it's best used for arterial clotting, not venous clotting.

Please keep in mind, most physicians are not specialist when it comes to diagnosis and treatment for blood clots. This attributes to that fact that nearly 300,000 Americans die each year as a result of a venous blood clot. Only about 7% of those patients who died were even diagnosed and being treated as having a clot. This is a major reason for all of us with a known clotting disorder to see a physician who specializes in thrombophilia (blood clot disorders).

In regards to pregnancy, there are many, many successful pregnancies now a days for those with clotting disorders. If on coumadin, it will be discontinued and replaced by using Lovenox or another low-molecular weight heparin. More information on this can be found in the following newsletter which focus' on Women's Health Issues (specifically birth control and pregnancy):

http://stoptheclot.org/Newsletters/FINAL_Spring%20Summer%2008%20Nwsl_WEB.pdf

Educate me. Why would you have to stop your ACT while on antibiotics that do affect it? Why don' t they simply adjust for them like they do for us valve people? Sure you'd have to test about 3 days afer starting one, but it should just be adjusted and continued.

INR is not a set number. You can test once at 1.7 and do a second test back to back and come up with 2.0 or some other figure, but testing twice back to back seldom returns the same INR. It usually floats about .5 between readings. All I'm saying is, Amoxicillin isn't supposed to affect INR and I've never had it affect mine. I have to take 2000mg of it before a dental appointment and still no INR change.

Yes you are absolutly correct Blebs, I did check with my hema regarding a-coags and a-biotics for lyme and YES she did say that Jen would probably need to be monitored every second day(INR) but as you can see,she is NOT on a-coags and her GP did ask her to stop acoags back in July (which, I still don't understand why) this happened before she was diagnosed with lyme.(in august)

I would appreciate if you would lower the attitude a knotch or two, I don't think it is waranted, heck we are ALL on the same side here.
Valve people or not, we are ALL doing some kind of anticoagulant and it's not by choice! Please remember that.
So I would ask you to stop the attacks...
Thank you.
Let's play nice and lets ALL get educated.

I'm not trying to sound like it's coming across. I'm sorry that it does, just trying to understand why some things are the way they are, that's all. It's not meant as an attack either. Probably best if I just don't post.

Not posting,is not what I had in mind...
Blebs, you have so much to offer, you just have to let your guards down, not so much on the defensive...
As I said we are ALL on the same side.

Denis

Thanks again for your continued thoughts. I've been away on vacation and haven't had time to check in.

My hematology appt has once again been rescheduled . . twice. It was to be this Friday Sept 5th and was then rescheduled for Sept 11. On Aug 28th after returning from my vacation in Vegas (had a great time!) I had a consult with a high risk OB to discuss my pregnancy options (when the time comes down the road after my DVT is taken care of). He confirmed that bc of my factor V and having had a DVT I will start a low-molecular heparin once I confirm I am pregnant. This would be taken throughout my pregnancy and 6 weeks post.

He also voiced concern that I was not currently be treated for my active DVT. After explaining to him that the scheduling dept had given me a hard time about 1) making me an appt to begin with and 2) rescheduled me twice he recommended I speak with the medical centers patient advocacy group about my frustration and see if they could get me in sooner. They were very nice but the best they could do for me is next Monday Sept 8th. So here I sit still anxiously awaiting my hematology appt.

As far as my lyme goes my symptoms and rash have gone away and I have 3 more days of medication left for it. Just in time for my appt on Monday when HOPEFULLY they will start me back on anti-coags. I'm so anxious to speak with the specialist finally after over 2 months of being diagnosed with my DVT.


RetiredNavy02 Thank you, I really appreciate your thoughts and input. The antibiotic they placed me on for my lyme is cefdinir (Omnicef). I am heterozygous for factor V leiden. I agree that most doctors (obviously my primary care physician included) are not specialists on the matter. That is quite evident in how he's treated my case with aspirin (which I also understood after researching it to be more beneficial for arterial clotting). The original anti-coags I was on for 2 days were prescribed by the ER doctor who found my DVT . . she arranged for a follow up with my pcp 2 days later. He determined the risk/inconvenience of anti-coags to out weight the advantages for me at that point. His recommendation was to start trying the aspirin to see if that resolved the issue. He felt that since we had removed the BCP (which he believed to be the leading cause at the time - I hadn't been tested for factor V at this point) the issue of my DVT would clear up on its own. Once I was diagnosed with factor V by my gynecologist (I had a yearly check up scheduled and they took it upon themselves to test me for clotting disorders after I told them about stopping my BCP bc of the DVT) about a week or two after my first pcp appointment I notified him and asked to be referred to a specialist on the matter (mostly bc I felt he was being unreceptive to my condition). He sent the paperwork over and I've been waiting on my appt with them ever since (late-July). I have had 2 follow-up dopplers since then and all show no new clotting but no change in my current DVT either. I'm going to be seeing Dr. Al-Mondhiry at Hershey Medical Sept 8th and as you can imagine it can't come soon enough.


Thanks again everyone for your continued input and support.

Jen,

Keep us posted on how things go at your next appointment!

Regards,
Tom

Well I'm back from the appt with the hematologist. No changes. He wants to keep me on baby aspirin just like my family doctor bc I'm "otherwise healthy" and no longer on birth control pills. Lovely . . what a waste of a copay. I'm beyond frustrated at this point and am done trying to actively pursue treatment when for the second time I've been told I don't need to be on anti-coagulators. Just crossing my fingers this 'specialist' is right.