Ernie Posted June 9, 2008 Report Share Posted June 9, 2008 Hi everyone,I have a brother and sister with POTS and NCS who also have both a clotting disorder. They both have had phlebitis. My brother almost died in September of a double pulmonary embolism. Now my sister has been in the hospital for 10 days because she keeps having phlebitis in the legs and arms even on blood thinners and the doctors can't figure out why.Our syncope specialist hypothese that it is due to our rare genetic POTS disorder.Does any of you have ever heard of that?Do you have any suggestion as to what treatment could be done do stop the clotting?We are afraid that she might die anytime because the clots develop so fast and we don't know when they will show in a critical area. Quote Link to comment Share on other sites More sharing options...
CarolynCRNP Posted June 9, 2008 Report Share Posted June 9, 2008 I have POTS but most of my symptoms seem to have started after I had clotting problems. I had a DVT in Feb 2007, 2 PEs in Feb 2007, and another DVT in March 2007. My hematologist has tested me for a bunch of clotting abnormalities but everything has come up negative. There are 2 that she has not tested me for because I would have to be off Coumadin to test. However, her opinion is that I have a yet-to-be-discovered clotting abnormality. Of course, many of the clotting problems they know about today were unknown 10 years ago.In order to answer your questions, I have a couple questions for you. Do you know what the name of the clotting abnormality your siblings have is? What drug is your sister taking to prevent clotting currently? What has she taken in the past? Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 9, 2008 Author Report Share Posted June 9, 2008 Hi Carolyn,My sister had never taken any medication before. She is now on coumadin and my brother which has the same clotting disorder is on Warfarin. Our mother died of Pulmonary Embolism in her sleep.The doctors are injecting her a drug to dilute the blood clot. I don't know the name.They will do a PET scan on Wednesday.They have not tested to know which genetic clotting disorder she has. I have been tested for the 6 most common and I don't have them. It does not mean that we have the same problem because our genetic POTS is all hypothesis. Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 9, 2008 Report Share Posted June 9, 2008 Oh Dear, Ernie-I'm so sorry to hear about your sister. How frightening! I have had phlebitis and possible blood clots before. I was also treated with IV coumadin. Have your sister's doctors checked to see if she has a small hole in her heart that is possibly throwing out clots? A long shot because of the genetic component, but it certainly bears investigating as it can be repaired.I, and other family members, are currently being evaluated by geneticists for Ehlers-Danlos, Vascular Type. Some patients get frequent blood clots with this and EDS is ofte implicated with orthostatic intolerance- which I know you and many other family members have. Might be worth checking out this angle although I'm not sure how it would alter your sister's treatment plan.....but it may help her doctors.I'll keep your sister in my prayers. Be sure and let us know how she's doing.Julie Quote Link to comment Share on other sites More sharing options...
maryfw Posted June 10, 2008 Report Share Posted June 10, 2008 I am so sorry to hear about your sister and will keep your family in prayer. My husband has been in and out of the hospital for two months because of PE's and DVT's. It is so scary because they did all the genetic testing and found absolutely no reason for him to have had the clots. He is on coumadin now. In the hospital he was on IV Heparin and then sometimes shots in his stomach too of another medication that I cannot remember the name of at the moment. Also they found my husband has the small hole in his heart that was mentioned earlier. They check for that by doing an echocardiogram with a camera they put down your throat. It can be closed with surgery and we are waiting for that to be done in about 6 months after he has been on the coumadin for 6 months. I know how truly scary this is and my heart goes out to your family. I will be thinking of you all and praying as well. mary Quote Link to comment Share on other sites More sharing options...
flop Posted June 10, 2008 Report Share Posted June 10, 2008 There are several different types of medication that can "thin" the blood (make the blood less likely to clot). Different terms/names used in different countries can be confusing so I've done a bit of googling and have hopefully come up with some useful info.a) Warfarin (brand names include Coumadin). An anti-coagulant tablet. The dosage has to be carefully controlled by taking regular blood tests to check the INR (International Normalised Ratio). The target INR range is decided by the doctor depending on the reason that the warfarin is being prescribed. Only available as a tablet. Takes several days work and it's effects last for several days after it is stopped. Unfractionated Heparin. Medication given by IV infusion. Dose is controlled by frequent blood tests (every few hours) to measure the APTT (Activated Partial Thromboplastin Time). This medication is given through an IV cannula / drip as a continuous infusion, usually around the time of surgery for patients normally taking warfarin. It acts very quickly and it's effects are short-lasting.c) Low Molecular Weight Heparin. A specially selected fraction of heparin that can be given by sub-cutaneous injection, usually into the abdomen (leaves bruises at the injection site!) once or twice a day. Often given alongside warfarin when warfarin is being commenced until the INR is in the therapeutic range.d) tablets that give a lower level of "thinning" of the blood by inhibiting the action of the platelets include Aspirin, Clopidogrel (Plavix), Cilostazol (Pletal) and Dipyridamole (Persantine). These medications are often used to prevent/treat heart attacks and prevent strokes.e) there are also intravenous medications called Glycoprotein IIB/IIIA inhibitors that are given at the time of angioplasty for patients with acute coronary syndrome.Sorry if that is too much technical detail, if anyone wants to know more just google any of the terms or drug names - wikipedia has got quite a lot of information (but note that it can be written by anyone so is not guaranteed to be correct).Flop Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 11, 2008 Author Report Share Posted June 11, 2008 Hi,Thank you Flop, Mary, Julie, and Carolyn. I appreciate your support and experience.My sister is also receiving heparine in her IV saline.My brother told me that the doctors want to find what genetic clotting disorder they have. I hope they do find it.Thanks Flop for doing a google for me. Don't worry, I like technical details. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted June 11, 2008 Report Share Posted June 11, 2008 Not a clue dear Ernie. Have any of you been tested for EDS? That sounds plausible and certainly seems to be associated with POTS? It's frustrating to have them look at the most common and then sort of stop, isn't it, like it's not possible there could be one more type out there.I do really hope they get to the source of the problems. morgan Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 12, 2008 Report Share Posted June 12, 2008 Hi Ernie,How is your sister doing now? In addition to checking for clotting disorders, encourage your sister to be checked out (blood test) for Ehlers-Danlos syndrome (vascular type.) Patients often present with clotting issues. All the best-Julie Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 20, 2008 Author Report Share Posted June 20, 2008 Hi,Well my sister has been in the hospital for 3 weeks now and she had a pulmonary biopsy today and the doctor found out that she has lung cancer. They cannot operate because it is too close to the pulmonary artery. We don't know if they will do radiotherapy or chemo. We don't know her prognosis either.I am so sad. Quote Link to comment Share on other sites More sharing options...
maryfw Posted June 20, 2008 Report Share Posted June 20, 2008 I am so sorry to hear the news and we will continue to pray. mary Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 20, 2008 Report Share Posted June 20, 2008 I'm sorry about the bad news, Ernie. That's really sad. I will pray for your sister, for you, and for your family.Hugs,Rachel Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 20, 2008 Report Share Posted June 20, 2008 Oh Ernie,I pray that it's caught in the early stages and that treatment will obliterate the rest. Lung cancer treatment and survival rates are so much better today. Keep hope alive. I'm sending lots of prayers your way.Julie Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 20, 2008 Report Share Posted June 20, 2008 Ernie,I so sorry to see your news, also. Quote Link to comment Share on other sites More sharing options...
Megan Posted June 26, 2008 Report Share Posted June 26, 2008 I'm so sorry to hear this news! You and your family are in my prayers.Meg Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 26, 2008 Author Report Share Posted June 26, 2008 Hi,Thanks for the prayers. The news are not looking good. My sister had a pulmonary embolism 3 days ago. The coumadin is not acting because of the cancer. The doctors have not decided on what treatment to give her for the cancer. We are still waiting to know what's coming next. Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 27, 2008 Report Share Posted June 27, 2008 I'm sorry Ernie- must be very hard on everyone. Quote Link to comment Share on other sites More sharing options...
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