DVT/PE & Blood Clotting Disorder Support & Information

Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

Tights!
Orchid Stencil
bellaunbound
I am searching for a pair of black opaque (not sheer or semi-sheer like pantyhose) TIGHTS in the 20-30 mm compression gradient range. I use the compressionstockings.com website to typically order my compression garments since they have a lot of brands, but I'm stumped on this one.  I have a good pair of sheer/nude compression hose, and lots of black opaque knee socks, but the knee socks aren't enough when I'm on my feet all day and I like wearing a lot of dresses with truly opaque tights in cooler weather.

I've decided to start researching brands now, as we all know that these stockings can be expensive.

Have any ladies in this community found good black tights?

Thanks!

March
lulzy, klutzcat
elfmoogle
Hey all, I basically went LJ inactive for a long time, which of course didn't help this community thrive. ><

But I'm back. And I wanted to remind people that March is DVT Awareness month, even though March is almost over.

With that being said, here's some videos from the Stop The Clot forum. It's very educational, I've been to it several times.

"Stop the Clot® Forum Video Series The National Alliance for Thrombosis & Thrombophilia (NATT) announces a video series of its signature Stop the Clot® Forum held in Minneapolis last fall that will be on www.stoptheclot.org and YouTube. Its theme is Thrombosis & Thrombophilia: The New Frontier in Public Health, and was produced as part of a Cooperative Agreement with The Centers for Disease Control and Prevention (CDC)."

1 DVT and 1 SAT, still waiting for the results of the genetic test...
toof teeth
dyingstart
Hello everyone,
First off, I just wanted to say how thankful I am to find this community on Livejournal. My doctors have given me a lot of information, but I still have a few questions.

Here's my story:
semi-lengthy historyCollapse )
Questions/concernsCollapse )

Thank you so much for taking the time to read this. I know it was kinda long and that I'm not the most eloquent person at 1:30 A.M.

Other side of the stretcher
Kon : My Heart Between The Lines
lethal_insanity
Hi all, I'm a 22 year old paramedic who was recently diagnosed with several large and small pulmonary emboli. I had no significant medical history prior to my surprising diagnoses. No chest pain, no shortness of breath... just upper left quadurant abd. pain. I was told that I would have been dead in a matter of weeks if they had not been caught (story here). Now I'm on coumadin (finally off the Lovenox injections. WOOHOO!) and they're trying to get my levels right. Initally my INR was 2.2. Today my INR was 6.3. That's up from the 3.7 it was Friday. I can't go back to work on the ambulance until my doctor is sure I won't bleed to death if I get kicked somewhere or if hit my head.

So here I am on the other side of the stretcher. I'm very well versed in the medical world and pharmacology so all this is home to me. And, I hate finger sticks but since I'm alive to get them I can't complain much.

I just wanted to say hello. :)

(no subject)
mint
jaydedfaerie
http://www.youtube.com/watch?v=gc_lIknSmXs
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DVT... doctor recommendations for the Maryland area...
intothesunbeams
Hi,

My Aunt developed DVT during her last pregnancy, over 2 years ago. Since then she's been through an awful rollercoaster ride of clots, pain, drugs, and hospital visits. She also has Ulcerative Colitis, which may or may not be related. I was curious if anyone familiar with the Maryland area had any doctor recommendations I could pass on to her. Thanks for your time...
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DVT and pain
black da&#39;man
fattastic
I got a question for anyone who has had DVTs but before I do I will give a little history about myself.

In 1996, when I was 26 years old, I had a bad case of pulmonary embolisms.  The case was so bad I had one collapsed lung and a partially collapsed lung.  On top of that I had pleurisy and pneumonia.  I was in bad shape.  I survived and I was on coumadin for four months and then aspirin for awhile.  The aspirin didn't go over well so I didn't have to take them anymore.  The yearly blood exams all turned out satisfactory.

Last week, I had a set back.  I had pulmonary embolisms again but this time I also had DVTs.  I spent a week in the hospital and now I am waiting on the results to see if I have a genetic disorder.  In the mean time my leg is still hurting.  If anyone has had DVTs how long did your leg bother you?  I was told it could hurt for several months.  The doctor never mentioned the stockings but I am wondering if I should wear them or not.
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Wow, you can find anything on LJ
don&#39;t panic
kjpepper
*wave* Hi everyone. I'm Andee. I typed "warfarin" into "interests" just for shits and giggles and this group popped up. Yay!

So my story (the short version, anyways - the long version is here if you want to read it), on April Fools Day, I started losing the ability to breathe without severe pain and had one of my partners take me to the emergency room, where a CT scan revealed that I had *drum roll please* a pulmonary embolism!! *Legend of Zelda 'you have an item' music* I was put immediately on coumadin and lovenox, and was in the hospital for two nights. Not fun. They packed me home on the 3rd day after teaching me how to give myself lovenox injections (I feel kinda badass for managing to do that) and stayed on both for another week. I'm finally off the lovenox, and am taking 7.5-10mg of warfarin daily.

It turns out I have factor v leiden. D: Pretty much what the plan is for now is I'm on warfarin for at least the next six months. We'll see after that.

The good news is that there's an anticoagulation clinic at my local hospital, where they check your INR, adjust your dosage, and talk to you about changes in your diet and medications. I've gone twice now, and it's been a really good, beneficial experience for me and makes the idea that I'm on medication that could make me, oh, hemorrhage a little less terrifying. I've been feeling a ton better since then - back at work on Wednesday, and I can breathe normally again without hurting (though lying on my side and yawning are still uncomfortable).

I don't really have question for people, but I'm glad this group is here in case I do later, and am willing to share my own experiences if people need.

not sure
katie
plickt
i am very thankful that i have never had a clot before- i found out about my protein S deficiency because of my mom's clots. so, my question is what were your first symptoms when you had clots?

i am a little paranoid that i will get one since i just had 2 long flights and now my calves are tight and sore. is that just because i didn't move for 16 hours or because i'm starting to clot? i am also paranoid about my condition, since i had leukemia 4 years ago, and i'm always worried about clotting and relapse and what not.

thanks in advance.

Levels.
The Smiths
strikingyoudead
At what level does a clot start to form?

I know when on warfarin your level should be 2.0 or higher.
My levels today are 1.4 and I just started(Wednesday) a progestin only birth control and I'm nervous that its going to cause a clot. Which means I'm super paranoid about ANY pain in my leg.
My levels have been wacky lately anyway. Three weeks ago it was 1.6.

My doctor upped my dose.
Its now 7.5 for two days, then 5MG for 5 days and then 7.5 for another two days.
Should I be this freaked out, or should I calm down a bit?
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Pulmonary Embolism
robin
nekosensei
On January 7th, I was reading and petting my cat when I felt my heart start to race and I had a hard time catching my breath. A minute later, I got down on the floor because I wasn't feeling well and then I passed out. Fortunately, my husband was home at the time and he called the paramedics. Later, he told me that, while I was unconscious, I stopped breathing and started turning blue.

I was taken by ambulance to the ER since my heart rate was high and I was still dizzy. They put me on oxygen, did a chest X-ray, and drew some blood. When they saw that my heart rate was not going down, they did a CT scan, which revealed that I had a multiple pulmonary embolisms in both lungs. (My regular doctor later said that it looked like a spray of small clots. We're not sure if it's a clot that broke apart or a bunch of small clots). I was immediately put on heparin and eventually weaned off of that onto coumadin. I spent a week in the hospital.

I guess, my question is for those who have had a pulmonary embolism in the past. How long did it take you to feel completely yourself? Another question is how long after the embolism did you go back to work? I'm asking these questions because I still tire out pretty quickly. I'm also wondering what to expect from all of this and it would help to talk with someone who has experienced this problem before.

As for what caused the clot, we're still not sure. At the time it happened, I was taking birth control and I had just had a foot injury (thanks to a falling peach can). Apparently, the CT scan done at the hospital showed what appears to be a 2cm mass in my posterior mediastinum (which is in the chest region, but towards the back). My regular doctor suspected lymphoma and ordered a CT scan of my abdomen, which was normal. We are going to keep an eye on the mass found in the CT scan of my chest. She plans to do another CT scan in the month to see if it's still there or if it's gotten any bigger. Once I go off the coumadin in a year, my doctor also wants to do a blood test to see if I'm predisposed to clotting.

So...that's my story. Can anyone out there give me any advice or tell me what happened to them?

Sorry about how dead it is here lately!
meant to do that, um yeah
elfmoogle
Sorry guys, I have kind of neglected this community lately. I've had a lot on my plate due to recent hospitalizations (mostly related to PAVMs, not clots).

Please continue to post any and all questions you have, and if you don't find your answers here, please check the following sites, they're great resources:

FVL.org - site all about FVL, as well as info about various other clotting disorders, even has a section with questions to a doctor which he answers fairly regularly, VERY informative. This was how I first educated myself about the disorder several years ago.

NATT - National Alliance for Thrombosis and Thrombophilia, has lots of brochures, newsletters, links, pamphlets, educational material from doctors, hospitals, clinics, etc on ... thrombosis and thrombophilia. Right now they are working on a local chapter in Minnesota so if you live in MN and want to volunteer to help them out, you can check their website and contact them.

There are also several e-mail communities out there that are VERY active. The one associated with FVL.org gets 10-20 e-mails a day (no spam, there are over 1000 members in that email list). So if you are wanting an answer right away, on just some random thrombophilia question, and are worried this community is too slow (it's true, it's slow, and again I'm sorry ^^;; ), try signing up for their e-mail list if you wish.

Not trying to chase anyone off, just want to give you guys the best ways of getting information possible.

Question!!
steph1278
Is coumadin making anyone elses hair fall out or thin?

Factor V and birth control.
Swans
strikingyoudead
I know this community is basically dead but I'm hoping someone can answer this.

Does anyone here have factor V and have had a clot, but is on birth control?
I've been reading and looking around and it says that progesterone only pills don't have a risk of blood clots. Now I don't know if that is 100% true. Its basically saying that in all the scientific studies, no one developed a clot.
My first clot I got from yasmin. I didn't know I had factor V and I didn't find out till after my second clot.
I'm seeing my doctor tomorrow, but I'm just hoping that I can get some more information this way I can discuss it with him.

I used to think that because I'm a lifer of blood thinners, that I could still take the pill since the blood thinners would thin my blood enough that the birth control wouldn't clot it, but I don't think my doctor is willing to take that risk. But if the progesterone pill is doable then I'll just take that.

Diagnosed: Factor V Leiden
beachlook
belovedwarrior
Within the last week, I was diagnosed with having Factor V Leiden disorder. I am not certain how to phrase that exactly, but I am sure you know what I mean. I didn't have any signs or symptoms (unless the HUGE and unexplainable bruises throughout my body that I sometimes get is caused by that??). I was tested and a few days later a nurse called me back to say that I was positive; I had the disorder.

I haven't a clue what this all means. Of course I've scoured the internet but I've ended up feeling more frustrated. I don't have clots. It seems unlikely that I will develop clots? So I just go about my normal day-to-day business as if I don't even have this disorder? I tried to ask the nurse but she wasn't very informative. She basically said that I should avoid any medications that cause clotting (like the Oral Contraceptive which is why I was tested in the first place to see if I could take it). She said to also avoid decongestants for that reason.

Ergh.. what? I feel so helpless. Do I really do nothing? What kind of medications should I avoid? How do I know if it causes clotting or not. Obviously anything hormonal. I am a 25 year old, nonsmoker, healthy individual. I hardly ever take medication unless it's OTC painkillers (are they even safe anymore?).

Where do I turn from here?
Any advice would be greatly helpful. Thanks!
Tags:

(no subject)
steph1278
good evening everyone,

I'm Stephanie 24, from West Virginia. I am a mother of one beautiful son. I have a question and I am not getting a straight answer from anyone.

In June I went to the doctor, with pain in my calf. It turned out I had a clot behind me knee. I was kept in the hospital for a week and put on coumadin. About two weeks later I begain having pain my my upper thigh. I went back to my family doctor and she sent me for a ultrasound of my leg, and it showed that my clot had extended up to my groin area. I guess this seemed to panic everyone including myself and I was placed back in the hospital. I saw a bloot clot from our local cancer center this time and he wanted a catscan done. He was looking for hidden cancer in my liver and kidneys that could cause this. But instead of finding cancer, it showed I had a PE in my lung. They ended up putting a fliter in my arota to my lungs, so I wouldn't throw another clot. I stayed in the hospital a few more days and went home on lovenox shots this time. I was reffered to UVA hospital and saw a specialist. I have been test for every clotting disored know and they have all came back negative. In the last month they have been trying to wean me off the lovenox and try and put me back on coumadin. They want my coumadin levels to ideally between 2.5-3.5. I have been getting my IRN checked weekly and I seem to be stuck at 2. I can't go off the lovenox until it gets to 2.5 at least. The whole issue with the coumadin orginally was they wern't sure if I was resistant or not.

After all the rambling...
I am wanting to know of any of you have trouble getting you INR high enough and if so are you resistant?

(no subject)
_forgetxmex
Hey..
So I had no idea there was any sort of community like this..

I'm Jessica...18 years old.

I was diagnosed with Factor Two in October of last year. I had a major pulmonary embolism to my lung.



Anyone else have Factor Two? Just curious
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I feared this would happen
logdogs
So I have this lovely little blood disorder called Factor V (five) Leiden. It was responsible for my massive blood clot at 18 and will for the rest of my life be a royal pain in my side. When not pregnant I take a pill blood thinner which is fine I can handle that. But now that I'm pregnant again I'm back to giving myself 2 shots a day. They aren't that back except for the fact that they sting and bruise but they are keeping me and my baby alive so they are worth it. The costs however are outrageous! A three month supply is over $12,000. We found out that our insurance will cover 80% but that still leaves us with needing to come up with an extra $2400 every 3 months on top of all of our regular expenses and doctors bills.

So we're freaking out quite a bit. Before we lost the last pregnancy we got a 3 month supply of meds through my old job (which had amazing benefits) so it only cost us $50. Those are the meds that I am working through right now. But they will run out on January 25th.

We've looked into applying for Medicaid through the State but ironically we make too much. According to the Federal poverty level calculation we make 355% over the national poverty level. To qualify for Medicaid you can't make more that 100% or below the poverty level. We're still going to go down to the state office tomorrow with a doctors letter to see if extenuating circumstances will help me get aid.

We looked deeper into our benefits and found out that "if a participants out of pocket prescription cost exceed $2500 their remaining prescription responsibility will be reduced from 20% to 5% for the remainder of the plan year" That will help us tremendously. It'll mean that after we get the initial 3 month supply in January we will only have to pay about $600 every three months. Still a lot of money but totally manageable.

So baring we don't qualify for Medicaid (which I seriously doubt we will). We need to find a way to come up with $2400 by the beginning of January (yes I don't run out until the 25th but I have allow for a few weeks for it to be delivered since its mail order only).

Coming up with that kind of money during the holiday season is going to be close to impossible. We will have about half the needed amount saved up by the 1st but we could really use suggestions on ways to come up with the other half.


Thanks for reading my rant.

new member
katie
plickt
hi, i'm katie, 25, and have protein s deficiency. i'm one of the lucky ones. my mom was diagnosed by a great doctor after she had a few clots and a long family history of clotters. when my mom did some research and found that it was genetic my sister and i were both tested. i'm a 65, not quite sure what that means, and my last protein s test was in 2001. i don't know if the levels change at all with time?

since i was diagnosed, i have not had any clots, but it did prove to be a bit of a complication with my APML leukemia i fought in 2004. it most likely contributed to my DIC (disseminated intravascular coagulation).

my sister never had any clots but had 1 miscarriage and was put on a heparin pump for her two other pregnancies. i'm not sure where her protein s levels are at, but the heparin worked well for her, other than being a real hassle. she has two great kids to show for it.

i beat the cancer and my husband and i are looking to get pregnant in the near future. i'm a bit nervous about the heparin pump. the OB said that i will most likely need it. but, my insurance company will not cover it without a fight. and after all i did with my leukemia, i don't want to fight with them any more.

this is a great community. it is nice to hear from people with similar strange traits. usually when i tell people i have protein s they look at me like i have 9 heads. even people in the medical community don't know what it means.

thanks for the support.

FYI
o rly ♥, coy
elfmoogle
FYI to anyone that may have them.
Roche Diagnostics Announces Nationwide Recall on Medical Device Used to Determine Blood Clotting Time
Contact:
Roche Diagnostics' Point-of-Care Technical Service Center
1-800-820-0995
FOR IMMEDIATE RELEASE -- October 19, 2006 -- Roche Diagnostics is notifying users of an important recall of all CoaguChek® PT test strips currently in the market, due to a potential for a test strip defect that may cause falsely elevated test results. The company has identified the root cause and is instituting corrective action with highest priority. To date, the company has confirmed one incident and its internal investigation suggests that a small percentage of strips may be affected. To date, no deaths, illnesses or injuries have been reported due to this issue.
CoaguChek PT test strips are used by patients in the home and by professionals in medical settings to determine blood clotting time of patients taking anti-coagulants, also known as blood thinners. Blood thinners are used to treat patients with a potential for blood clots, for example, patients with heart valve replacements, certain types of heart disease or blood clots in their legs. Incorrect results may have serious or life threatening consequences because patients may be improperly treated.
Roche Diagnostics has determined the potential for a test strip defect when insufficient active ingredient (thromboplastin) is applied to the test strip, possibly causing falsely elevated results. As a result of the unpredictable positive bias, patient test results may be falsely elevated. This can result in an incorrect dose of anti-coagulant or unnecessary corrective measures to reduce the effect of circulating anti-coagulants. Both incorrect treatment choices could put patients at risk for blood clots.
Roche Diagnostics is notifying all home users of the CoaguChek PT test strip to immediately discontinue use of and discard the product as well as to consult with their health care provider to determine alternate testing methodologies and clinical implications. U.S. customers with questions or concerns should call Roche Diagnostics' Point-of-Care Technical Service at 1-800-820-0995.
Roche Diagnostics is notifying all health care professionals who use the CoaguChek PT test strip to institute 'duplicate testing' - or two strips on each patient - using different lot numbers to reduce the risk of bias. If health care professionals require another lot to enable duplicate testing, they are encouraged to call their medical supply distributor. For general questions, health care professionals should call the company's Point-of-Care Technical Service Center at 1-800-820-0995. These actions must remain in place until the issue has been resolved and health care professionals are supplied with unaffected replacement product.
Letters are being sent to customers, providers and physicians - including additional information regarding this voluntary action. Roche Diagnostics is working with its affiliates worldwide to coordinate appropriate activities. Any adverse reactions experienced with the use of this product, and/or quality problems should also be reported to the FDA's MedWatch Adverse Event Reporting program online [at http://www.fda.gov/medwatch/report.htm <http://www.fda.gov/medwatch/report.htm> ], by phone [1-800-FDA-1088], or by returning the postage-paid FDA form 3500 [which may be downloaded from http://www.fda.gov/medwatch/getforms.htm <http://www.fda.gov/medwatch/getforms.htm> ] by mail to [MedWatch, 5600 Fishers Lane, Rockville, MD 20852-9787] or fax [1-800-FDA-0178]. This action is being taken by Roche Diagnostics with the knowledge of the U.S. Food and Drug Administration.

Test to measure your risk
o rly ♥, coy
elfmoogle
Pardon the formatting, it was from an e-mail.

Scientists Develop a Test to Measure the Potential of Blood Clot RecurrenceCollapse )

(no subject)
Made by kisstheshadow!!
bywnans
Hi there. Im sorry if this sounds like im being a slight hyperchondriac, maybe i am i dont know, but i thought i would ask in this community seeing as from what i have read the members have a lot of experience with DVT. About 2 weeks again i twisted my knee, it hurt for a few days and i couldnt kneel on it but within a couple of days my knee was fine. However,ever since then i have had mild pains that come and go in my leg (both my calf and thigh), there is no swelling or redness or discoluration. Iam terrified that i somehow have DVT and was wondering if these symptoms sound like anything anyone else has experienced?
Thanks for any help in advance.
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Genetic Blood Mutations
Bri
seraphbriar
Hi, I'm new to the community. I've known since I was 17 that I had "a clotting disorder" but I had been under the impression that it was Protein C Deficiency. Back in January, I had new bloodwork done, just for a baseline/update, and I found out that I actually have two genetic mutations that predispose me to thrombophilia.

I am heterozygus for the C677T mutation of the MTHFR gene (which is associated with elevated homocysteine levels). I am also heterozygus for the G20210A factor II mutation (prothrombin). My protein-C antigens are slightly reduced, but the protein-C activity is normal. I do not have the most common mutation, Factor V Leiden.

I need to be on folic acid for sure, and possibly B-12. I also need to make a greater effort to reduce my weight. That all said, though, I've never had a blood clot. My mother's experiences with her 5 DVTs and one PE have probably saved me from having my own problems with those for quite some time, if I'm lucky. I've found information on the Factor V Leiden, but not much on the Prothrombin 20210 or the MTHFR (I think "motherf**ker" every time) genes. Does anyone else have one or both of these and can provide me with some more information? My hematologist was pretty solid in recommendations of do or don't (like prolonged sitting, pregnancy complications, surgery, etc.) but this is fairly new for me to be actively looking up information on my own. Is there a way to tell how serious a case it is? Or is it safe to assume that if I'm 23 and haven't had a blood clot yet, it must be mild?

Oral hormones vs. intranasal hormones for post-menopausal women
o rly ♥, coy
elfmoogle
Less Effect of Intranasal Than Oral Hormone Therapy on Factors Associated With Venous Thrombosis Risk in Healthy Postmenopausal WomenCollapse )

Potential way of testing for PE in ER?
o rly ♥, coy
elfmoogle
Measurement of expired carbon dioxide, oxygen and volume in conjunction with pretest probability estimation as a method to diagnose and exclude pulmonary venous thromboembolismCollapse )
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hello
stellamirabelle
hi- I just found this community and I'm glad it exists. My partner has a Protein S deficiency and is on coumadin pretty much for the rest of his life. He had a pulmonary embolism in 2003 and is doing well now, but I still worry about him a lot. We have a son together, so I also worry about my son. He is only 16 months old right now, but I know that it is hereditary.

We are doing fine, but I am looking for any info on making the right lifestyle choices and I am really curious about alternatives to coumadin, because it makes my partner feel bad a lot of the time (headaches, tiredness etc.)

Anyone else here have a Protein S deficiency? I'd never heard of it before I met my partner.

(no subject)
incipientmom
I'm new to this community. So I'll give a little background info...

My name is Jennifer and I'm a mother to 3 lovely children. My oldest daughter, is my step-daughter but her mother hasnt been in her life since she was 5 months old, so I'm proud to say I'm her mother. I'm 22 and a stay at home mom. I'm a laid back, loves quality time, type of girl.

After the birth of my youngest child, Genesis, I wasnt able to feel my leg hours after the epi should have worn off. I was told this is normal and can last up to several days, so I didnt think too much about it. Both my biological children were born by c-section. My son being an emergency and my daughter being a repeat. I believe it was about the 6th day after she was born that I told the doctors office I still could not feel my leg. They made me an appointment I believe it was about the 16th? 20th? day after she was born that I finally got an appointment. My doctor (god bless him) sent me to the ER right away because he "knew" it was a blood clot. The ER doctor told me I had ruptured nerves (which I did, but I would later find out I also had a bloodclot) and sent me on my way.

Long story short, they found out I have DVT. I've been on numerous medications and none have helped. I now get injections and I'm suppose to actually give myself them but I know I wouldnt do it, so I go to him and he does it.

It's been 2 years, and I still have DVT. My legs are swollen and they often spasm which causes extreme pain. I just feel like my body is attacking me and somedays I feel like I'm too tired to fight back anymore.


---sorry for the horrible spelling and grammar. I'm sick and depressed today.
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A mini update
smile
applejakk
Well I'm done with the pregnancy part of my trip. I stayed on Lovenox until I was 36 weeks pregnant. I was then switched to heparin. We never did get the dosing for that correct before
I had my son via c-section. I had blood work done with a dosing change 3 to 4 times a week. Starting at 25,000 units ending on 18,000 All in a matter of two weeks. The worst part was NONE of the pharmacies carried 25,000 unit vials, and I had to give myself two shots twice a day when the doses were above 20,000. My body also hated the heparin, every injection site brused like mad and got hard knots under it that hurt like hell.

It was fun to find someone to do the spinal due to my numbers being high. Finally a great anesthesiologist came in and did it. He rocked, as I did have some bleeding problems and required some shots in my shoulder to stop the bleeding. While in the hospital I was put on a heparin drip and coumadin. I was started at 15mgs of coumadin and dropped to 10 before leaving the hospital Only 3 days of the drip.

Blood test after blood test, I was slowly dropped,to 7mgs of the coumadin. My INR is now 2.9 but my last two Ptt's were 89 and 69. Its not clear to them why this is. So Monday I go for a mixing study. I don't know what my body is doing. I need more info on a mixing study, I'm going to google it tonight. Have any of you ever had one? Or for that matter a good INR but a high ptt time? From what I understand this happening is weird. At first they thought some heparin came in contact with my blood, but after lowering my dose, and confirming I'm not taking heparin it was still high.

Anyway I just needed to update a bit for my own sake. I talk about INR's and PTTs and people look at me like I'm insane. At least in here you all understand the meaning of it all.

Doctors, more clotting, some natto, and a bag of fish
Ferret
fetchingferret
Well, no fish, it just sounded right. :D Har.

Anyway, Jello, my name is Ferret, and my body is trying to kill me. I was diagnosed 4ish years ago, and have been clotting like a trooper ever since. PE's every time. Lately my GP's new trick is to say "No, its not as clot, go home and take some pain killers" then conveniently forget to give me some. Last time I was in the hospi they based everything off a D-Dimer and an X-ray. My clots have ever only shown up with a VQScan (the one where you breath the stuff in) which I keep telling them but they are convinced otherwise. It would show up on the X-Ray and there is no way you would get a negative D-Dim they say. Which I now know is a load, and I keep trying to tell them, but hey, they are doctors!!! And I am the only fricken FVLer in the Village! (Sorry, to much little britian on adverts today) Cut for friends page friendliness!Collapse )

I guess what I really need to know, is what questions to ask, and what could be going on? My only symptoms are generally feeling crappy and having chest pain, which is why it took them 20 hours in the ER to figure out what was wrong with me the first time as the D-Dimer and EVERYTHING ELSE were normal. Which I keep telling them and get "that's imposable, you would have had definite results with the D-Dimer" I can change doctors, if I can find another one in my "area" that is taking patients. As is I have to go a few miles onto the Island because all the GPs around here are booked, even the one right across the street from my fricken house. Hooray NHS. I can't go private cause I can't afford it, so pretty much I have to move to get a different doctor, which is a bit excessive.

Anyone else have freak clots? Anyone have ideas or suggestions? Help!?! Also, does anyone else get the pinching in the brain feeling that oozes out and feels like your nose is bleeding even when it isn't? Any idea what that is? Again, clueless doctors. Oh, I am taking natto as well, which I'm not sure is helping, but the leg cramps are gone, so I guess it is a bit.

Thanks guys! Sorry so long!!!!!

Ferret


(no subject)
o rly ♥, coy
elfmoogle
Well, after being off of coumadin for three weeks, I had an episode of massive hemoptysis. I went to the ER, was admitted, and was kept in there for a week. Then I started feeling pain in my calves, toward my ankles, and I told the nurses, who waited until two days later to do an ultrasound. I was found to have bilateral DVTs from my femoral veins to my calves (I think that's how it goes..they were from my mid-thigh to mid-calf anyway). I was incensed. The hematologists on call didn't want to put me on blood thinner for fear of more hemoptysis. They figured the IVC filter would catch any clot I let loose from my legs. I insisted a transfer to Mayo, since I had already fainted once, my heartrate was higher than normal, I was shown to have moderate to severe pulmonary hypertension, and I could barely walk without panting. Once I got to Mayo, they suspected PE, so they did a CT scan, and sure enough I had PEs in the main artery and segmental and subsegmental PEs. I also had a big clot beneath AND above my filter. So much for it catching things. All this after three weeks off coumadin and a one week bedrest stay at a hospital. So, to recap: bilateral DVT, bilateral PE, and clots above and below my IVC filter. I'm lucky to still be here, frankly. At Mayo, the cause for all the hemoptysis I've been having was FINALLY found. I had a bunch of PAVMs - at least seven areas were embolized with titaniam coils, not counting what my local hospital embolized (three areas) with some quicker but more likely to recanalize material. Fluid ended up gathering in my left lung afterward - 250ccs were drained. I spiked a fever. My lower left lobe collapsed. My left diaphragm raised up due to the embolization procedures and it's unknown whether it will fall back in place or not. My lung is expanding, doing better, I was on oxygen for most of my hospital stay, but I'm not on it now. I do get very short of breath if I stand for a long period of time or walk farther than several hundred feet (I know I can walk more than 300 per physical therapy, but beyond that I don't know the exact distance).

The hospital I started out at KNEW I had FVL (heterozygous), and they had pneumatic compression boots laid out to put on me but they never did. They had TED stockings for me which they never put on. After I was in a great amount of pain, THEN they started pushing me to move around and by then I couldn't. I was in the hospital for over a month. Now my legs (especially my right) hurt a LOT when I walk, sometimes when I'm just sitting or laying down. I have most of the feeling back in my left leg, but my right leg is half feeling, part pinpricks, part tingling, part numb. I wear support hose now that I've come home (just got home today), but in the hospital, they wrapped my legs with ACE bandages to help keep the swelling down and improve circulation.

At Mayo, they considered putting another IVC filter in, but had to ditch that idea because it would have to go on top of the old one, and they were afraid of renal vein embolization. I feel like a giant clot, but I'm glad to be alive. I celebrated my 24th birthday in the hospital.

Oh yeah, I'm back on coumadin now. While at Mayo, until my INR hit 2>, they had me on Fragmin as well, but today my INR was 2.1, and it has been steadily climbing at 10mg per day of coumadin. I see my doc on Friday, I'll likely get a check then, to be sure I'm not climbing right over the 3, or dipping. I think I'll be able to return to my old dose of 10mg 5 days a week and 7.5mg 2 days a week, since 10mg every day seems to be making my INR creep up .2 every day.



(x-posted to my journal)

(no subject)
harry&#39;s gothic portrait
shecountscrows
Hello!
Lj is wonderful....there really is a community for everything, and I was so glad to find this one.
After several years of problems with blod clots (some of them quite scary) my Mom was finally diagnosed last year with a rare genetic factor that causes Protein S deficiency. I need to be tested for it as well, but have to wait until I can get health insurance this Fall, to avoid the danger of having it labeled a "pre-existing condition". (Greedy Insurance companies are lousy, aren't they?)
I just wanted to say hello, and wondered whether anyone else here has Protein S deficiency, too?

~missie

cross posted from my LJ. - Going off coumadin due to bleeding complications
o rly ♥, coy
elfmoogle
Well, I'm being forced to go off of coumadin by my pulmonologist, hematologist, and the primary who saw me in the hospital this time.

Here's what happened.Collapse )

(no subject)
fire elemental
dkphoenix
I got some good news this week. :-)

(Quick background: I had multiple PEs caused by DVTs in my right leg on October 12th. Clots in both lungs, along with a saddlebag clot in my pulmonary artery. One week in ICU followed, two weeks total in the hospital, been on coumadin every since.)

I went for a follow-up CT scan this Monday and the clots in my lungs, along with the big saddlebag clot have completely dissolved. This means I am no longer in danger of developing secondary pulmonary hypertension, which is something they were concerned about. It is so nice, after three months of complications and things going wrong to have something go that right. :-)

Grr
Pilz-e
winterssaphire
-=+=- Cut cause its long n stuff. Completely on topic of clots though, so please read if you have a few moments to spare. Thanks so much! -=+=-Collapse )

Ello
Pilz-e
winterssaphire
Hi, My names Liz. New here, not new to the issues. Been on Waf for about 4-5 years now. Will do a a propper "hiya" later. Hurting a bit and fairly depressed. Guess I just wanted to say hi? lol I donno :P Take care all.

Some Silly questions...and I'm so sorry for being so down
smile
applejakk
Short story then a ton of questions. I know every one is different, I just wanted to see how other people cope and get treatment for clots in general. To see if maybe there are other options I can explore. I'd never heard of a filter till I joined this community. I'm such a spaz over this...here goes.....

. I went to the hospital before christmas with chest pain. They automatically asumed that it was a PE. They tell me to get the CT scan with the dyes (remember I'm pregnant as well) because it has to be nothing other than a PE. Turns out, theres a tiny spot on my lung that could or could not be a clot, their not sure its even real could have been a smudge on the x-ray or a fault in the film.

They didn't bother to even look into the chest pain after the CT scan didn't help. I just feel like some big science project, once the cool parts are over with pack it up and toss it. I'm scared to death of every little pain now.

I was wondering, did any of you ever hear of someone getting a clot removed? Is the only real treatment blood thinners? When your clots were discovered were super clot busters used? Do any of you take Lovenox as well? Were any of you sent home with formed clots still in you posing a risk? How long does the body take to absorb a clot? I feel like there has to be more they can do, Is there? Are their more questions I should ask my doctor? Have any of you had surgery after they found your disease? .

Ugh I just feel helpless. I just want to live and raise my kids. I just want to feel safe with my own blood again. How do you deal with the emotional portion of these diseases? I'm finding the emotional part the hardest.

Hello, new member here
fire elemental
dkphoenix
Hi everyone!

LJ is great, there's some kind of community for just about everything. I'm a little surprised there aren't more members here, since DVT/PE and all the associated clotting disorders aren't that rare. But, on to my story, by way of introduction.

My story, in briefCollapse )

Nice to meet y'all.

Various studies/clinical trials going on related to DVTs
o rly ♥, coy
elfmoogle
Now, keep in mind that studies and clinical trials are risky business.  Never get involved without being fully aware of what both the risks and benefits are.  Sometimes these involve unproven methods as well as medications or devices that could interact with what you currently have or take.  Make sure to consult with your own doctor before participating, and always keep the lines of communication open.

Now, without further ado,

The studiesCollapse )

..and the trialsCollapse )

There's plenty more. Just go to either http://www.clinicaltrials.gov or http://www.centerwatch.com/ and do a search. You should be able to find something. Just remember the warning/disclaimer from earlier. These are often non-approved treatments/drugs/therapies, so you are taking your body and life into unknown territory for sure when you do trials. I am not dissing them, however, as I've participated in studies before for lesser medical things, and sometimes they give monetary compensation, which is always nice. Enjoy!

Vitamin Intervention for Stroke Prevention Trial - stroke - homocysteine - stroke prevention -
o rly ♥, coy
elfmoogle
Vitamin Intervention for Stroke Prevention TrialCollapse )

Full text is a pay article at http://stroke.ahajournals.org/cgi/content/abstract/36/11/2404

(no subject)
smile
applejakk
I'm so glad to see a community that covers clotting disorders. Due to the disorder I have I've only been able to find lupus communities.

I was 12 weeks pregnant with my 3rd pregnancy. I got a pain in my pelvis and it really felt like I just pulled something. I let it go for about a week. Finally I was unable to walk it hurt too bad and when I did force myself to move I couldn't breathe. I go to the ER and they discovered a huge clot in my pelvis. This clot was so large it wasn't measured in 100ths but 10ths. Because of me being pregnant no one but my ob/gyn (Bless her heart) will humor the idea of treating me. She ran the 7 tests that are common with DVTs. Turns out I have lupus anticoagulant. I don't have the autoimmune disease that usually gos along with it. So here I am. 18 weeks pregnant with my son, taking 90 mg shots on Lovenox twice a day. The clot was so large that my ob/gyn and one at John Hopkins had no fear of it moving. So I was able to assume regular activity. Last week they did discover another clot (or maybe bleed) in the placenta. I thought Lovenox stopped the forming of other clots. Now I was told that the Lovenox wouldn't cross the placenta so the baby will not have bleeding problems at birth caused from the meds. So I'm really scared about losing my life and our unborn son. I really feel so alone and scared. I want to raise my kids and live as normal as I can. I am finding that being scared of clotting or doing something that causes a clot makes it hard to live. Every time I have a ache or pain I wonder if its another clot. I slept on my neck wrong and it hurts.. I automatically feel it to see if its hot, and if its a little warm I panic. I guess one of the first questions I have ..How long does it take to stop worrying so much after finding out you have a clotting disorder. Is it heard of to form clots even if on the thinning drugs, and your blood levels are perfect? Is there anything I can do other than taking the lovenox to stop clots from forming? Thanks in advance and sorry for being such a depressing person. Its just really scary stuff here :S

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