If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Blood clot

Collapse

About the Author

Collapse

Helen Find out more about Helen
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Blood clot

    I just got back from Toronto, I had a EPS test which they found two problems with my heart. The first was a arrhythmia problem which the nerve was burned and when they test the HCM part, my heart stopped and I was shocked back. They decided that I needed the ICD implant right away. During the MRI they found a blood clot in my lung which could have been from the EPS test. After several days of being on IV heparin I got my ICD implant. Now I have to see Hematologist about this blood clot, apparently I am to young to get clots (I am 28). Has anyone else experienced this problem.

  • #2
    I can't stand it when doctors and nurses say "you are too young" to have this or that. It is TOTAL BS. Babies are born with HCM and cancer --there is no such thing as "too young."

    I had a stroke (blood clot) at 31 and heard that phrase from everyone. It made me want to scream, especially since it was their believe that I couldn't have a stroke that caused it in the first place.

    I am confused about what you had done. Did you have an EPS AND a radio frequency ablation for the arrhythmia?

    You need to be on blood thinners to get rid of the clot. Are you on Coumadin (warfarin)?

    S

    Comment


    • #3
      Sarah

      Yes I both done and I am on Coumadin which I am having a hard time getting my INR level just right. I went up to 4.1 and then down to 1.5. It looks like my boyfriend has betten me up with being in the hospital and then all the blood work to be done, then I also managed to trip over the cat and fall down the stairs, nothing damaged just some more bruises. I am waiting to have another CT Scan done to see if the blood clot has gone away then I may be able to get off the Coumadin.

      Comment


      • #4
        Helen,

        Sorry to hear you are dealing with blood clots at such an early age. My wife also had a bout with blood clots at twenty eight years of age. At that time it was assumed to be caused by birth control pills. She had this problem once again about two years ago {41}. Our doctor informed us that there was a test he could do to see if it was genetic in nature. My wife has the gene which she received from her mother. The doctors were able to determine this with a simple blood test. My wife will probably be on blood thinners the rest of her life because of the genetic connection.. Unfortunately this condition can also be passed on to our kids who also may have one of the HCM genes.

        You may want to be tested for this gene. Off hand I do not know the name of the test/wife is on vacation out of town/ but I can find out if you want. Hopefully you do not have the gene.

        Rich

        Comment


        • #5
          Rich

          When your wife gets back from vacation, I would be interested in knowing what the test your wife did or the type of defective gene.

          Thanks Helen

          Comment


          • #6
            check out this web site and click on Vitamin K for a list of foods in order by amount of Vitamin K (or the K content with food in alpha order).

            you must have about the same level of vitamin K each week and the stupid booklet they give you about coumadin only lists about five foods.

            http://www.nal.usda.gov/fnic/foodcom...k/wt_rank.html

            Comment


            • #7
              Helen,

              Will do Helen.

              I have to ask are you taking the generic coumadin or the real deal? Reason I ask my wife's count was always all over the map. Her doc wanted her to eat healthy.. IE........salads and such though he did say very little dark greens.......so he adjusted her doses to accommodate her diet. She would go as long as three months were her numbers stayed close, then bang they would go up way high or down. No rhyme or reason. It got so bad that this past May he put her on name brand coumadin. It has helped a bunch in keeping the numbers much closer. But still it is not a perfect science, she expects to have to change her dose every couple or months or so.

              If you can keep your weekly diet.. how shall I say.. boring week to week for the most part. Don't binge on foods you rarely eat. I know one month we ate lots of salads, not good her numbers dropped. Also when she started taking a multi vitamin her numbers dropped. However the vitamin was a good thing and her doctor adjusted her dose.


              Rich

              Comment


              • #8
                I've had lots of issues with blood clots. When I was 22 I had DVTs in my arm and neck. Then in 2004 I had a blood clot in my lung lots of heparin. Man I hated that stuff. They also found a couple of DVTs in my legs. Unfortunatly, they cannot figure out why I'm having all of these blood clots. I see a hematologist as well and she's ran the whole battery of tests and they all came out normal.

                However, I do not take coumadin. Because, I have had lots of hypotensive issues to the point of passing out we believe that the coumadin would be too dangerous. I.E passing out hitting my head and having a brain bleed. Not good either. So, we decided to do an IVC filter. An Inferior Vena Cava filter traps the blood clots that come from your legs before they can get to your heart, lungs or brain. Unfortunatly, one of the side effects is if you get a clot that is big enough to be trapped it could cut off circulation to your lower body. so, you always have to keep a close watch on your circulation. But, to me this is much better than constant stickings for the INR bit!

                Mary S.

                Comment


                • #9
                  Ive had a blood clot in the Subclavial, which is where they put my leads(sp?) since right after they placed my ICD...ive been on blood thinners and now on Lovenox till after my pregnancy is over...its different than what you have but im 32 and have never had issues with those before...
                  ~Wendy~
                  Wife to Robert
                  Mom to Sara (almost 16mths)


                  Hypotrophic Cardiomyopathy with ICD placement

                  Comment


                  • #10
                    Helen,

                    Sorry this has taken so long to get out. My wife brought home a copy of her test last week for me to see. I realized in a instant that this was not a simple test as she led me to think. I honestly had a hard time making heads or tails of any of it. So with my limited knowledge and the Internet I have pasted an article below that does a good job of describing the types of genetic blood disorders for DVT, Deep Vein Thrombosis which often leads to Pulmonary Embolisms. My wife was tested for all those listed. However the test for the Protein C and S will more then likely show a lower number then actual unless the individual has been off thinners for two weeks. That was not a chance our doctor wanted to take which was wise as her numbers still came back positives.


                    Rich


                    http://www.theuniversityhospital.com...tics/blood.htm

                    Thrombosis is the presence or formation of a thrombus - a blood clot that forms within a vein or an artery. The condition arising from clots developing in the body’s deep veins (typically the leg and pelvic regions) is known as Deep Vein Thrombosis, or DVT. Sometimes the blood clot dissolves on its own, with no harm. But a clot that prohibits adequate amounts of blood to pass through a vein can result in necrosis, or tissue death. Even worse, the clot could break off, travel through the blood stream, and lodge itself in an artery in the lungs, causing a life-threatening condition known as pulmonary embolism (PE).

                    There are many reasons why these abnormal clots form. When a person’s ability to move about is limited, whether due to a long airplane flight (“Economy Class Syndrome”) or confinement to a bed after surgery, blood can pool and form clots. The use of oral contraceptives or estrogen therapy can also cause clotting.

                    Genetics can have a role in the development of thrombosis. There are several known mutations (heritable following an autosomal dominant pattern) that interfere with the body’s blood clotting process. The most common is the Factor V Leiden mutation, a resistance to Protein C, a protein that keeps the formation of blood clots in check. Present in 5 – 7 percent of the general population, the Factor V Leiden mutation is present in 20 percent of more of all people with thrombosis. Less frequently occurring mutations include Prothrombin II, Protein C deficiency; Protein S deficiency; Antithrombin III deficiency; Plasminogen deficiency; and Heparin cofactor II deficiency. It is possible for a person to have more than one of these mutations. When the Prothrombin II mutation is present with the Factor V Leiden mutation, the risk for DVT or PE is increased substantially.

                    The genetic test for Factor V Leiden and Prothrombin II is a DNA analysis taken from a sample of blood or cheek cells. There are also panel tests that screen for several of the mutations described above. Testing should be considered for: people who experience a thrombotic event—such as a DVT or PE— before age 50 or have multiple thrombotic events; those with a family history of thrombotic events, even if they themselves are not experiencing symptoms; and people with a first-degree relative who is known to have one of the thrombosis mutations.

                    A person who has had a thrombotic event and, after testing, is found to have the Factor V Leiden mutation or any of the other thrombilia-related mutations, is usually advised to take anticoagulant medication, such as Coumadin. The period of time in which the medication is taken will depend upon the specific circumstances surrounding the thrombotic event.

                    Additionally, affected persons as well as family members who have a mutation but no history or indication of clotting disorders would be advised to take preventive steps, such as not smoking, not taking birth control pills, wearing support hose and stretching during long airplane flights, and alerting their physicians if they are scheduled for surgery or are immobilized for a long period of time.


                    TheUniversityHospital.com

                    Comment

                    Working...
                    X