Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hi, I posted on here a few times since I was diagnosed with dvt back in March and have found it very informative and helpful, so just wanted to say thanks for that :)
I also wanted to ask about what sort of care most of you get with your DVTs. I understand that each person is different and therefore needs different levels of attention and care, but I am very confused about a few things and just thought I would air them and see what you guys think...
I was diagnosed with an extensive DVT that goes from my iliac to femoral vein (knee to groin) in March. The month before I had been misdiagnosed with appendicitis and had my perfectly healthy appendix taken out. The hospital staff now believe that the original problem was the blood clot, but as they never did a CT scan before taking out my appendix they never saw that. So, they are basically telling me that they operated on me while I had a blood clot, putting my life at risk and also making my blood clot much worse by performing surgery. Even if the blood clot wasn't there before the surgery, then they caused it with an unnecessary surgery, all because they failed to do a scan.
They also left staples in my stomach after the surgery which they never told me about and never bothered to remove until I was re-admitted 3 weeks later (the staples should have been removed 7 days after surgery). There were lots of other oversights and basic mismanagement, but I never reacted and waited patiently to get some answers...
I recently had an appointment with my haematologist.. I had to wait 2.5 hours sitting in discomfort only to be told that they had made a mistake and that I wasn't due to be seen until I come off the warfarin in September. I asked her when I would be getting another scan done and she told me that I wouldn't be. She also told me that they assumed by blood clot was due to being on birth control, and that it was not really necessary to do a full thrombophilia screening to test for blood clotting disorders. (They have already done all of those blood tests but won't even look at the results because they accidentally did them while I was on warfarin).
I have Raynauds disease and a positive Antinuclear antibody...I would have thought that because of this it would be absolutely necessary to do the tests for the blood clotting disorders. Not only this, but I cannot believe that they will not give me another scan, and to get a scan done as a private patient costs between 400-500 euros.
I feel that I am being mistreated by the hospital and that they are not taking me seriously... I am just wondering if anyone else has had similar treatment, and what sort of aftercare I should expect?
(The only aftercare I am getting now are the weekly blood tests for my INR level, which has been consistently too low. It went up a bit last week but in general has been well below 2...I have been using a crutch to get around until now, my leg is getting stronger but I can't straighten my knee or put too much pressure on my leg, I am doing exercises to strengthen it but I wasn't told what sort of exercise to do, no mention of physio or anything).
Is it common to not get a scan afterwards? and what about the tests for blood clotting disorders?
(sorry for such a long post. :)) Thanks :)
I also wanted to ask about what sort of care most of you get with your DVTs. I understand that each person is different and therefore needs different levels of attention and care, but I am very confused about a few things and just thought I would air them and see what you guys think...
I was diagnosed with an extensive DVT that goes from my iliac to femoral vein (knee to groin) in March. The month before I had been misdiagnosed with appendicitis and had my perfectly healthy appendix taken out. The hospital staff now believe that the original problem was the blood clot, but as they never did a CT scan before taking out my appendix they never saw that. So, they are basically telling me that they operated on me while I had a blood clot, putting my life at risk and also making my blood clot much worse by performing surgery. Even if the blood clot wasn't there before the surgery, then they caused it with an unnecessary surgery, all because they failed to do a scan.
They also left staples in my stomach after the surgery which they never told me about and never bothered to remove until I was re-admitted 3 weeks later (the staples should have been removed 7 days after surgery). There were lots of other oversights and basic mismanagement, but I never reacted and waited patiently to get some answers...
I recently had an appointment with my haematologist.. I had to wait 2.5 hours sitting in discomfort only to be told that they had made a mistake and that I wasn't due to be seen until I come off the warfarin in September. I asked her when I would be getting another scan done and she told me that I wouldn't be. She also told me that they assumed by blood clot was due to being on birth control, and that it was not really necessary to do a full thrombophilia screening to test for blood clotting disorders. (They have already done all of those blood tests but won't even look at the results because they accidentally did them while I was on warfarin).
I have Raynauds disease and a positive Antinuclear antibody...I would have thought that because of this it would be absolutely necessary to do the tests for the blood clotting disorders. Not only this, but I cannot believe that they will not give me another scan, and to get a scan done as a private patient costs between 400-500 euros.
I feel that I am being mistreated by the hospital and that they are not taking me seriously... I am just wondering if anyone else has had similar treatment, and what sort of aftercare I should expect?
(The only aftercare I am getting now are the weekly blood tests for my INR level, which has been consistently too low. It went up a bit last week but in general has been well below 2...I have been using a crutch to get around until now, my leg is getting stronger but I can't straighten my knee or put too much pressure on my leg, I am doing exercises to strengthen it but I wasn't told what sort of exercise to do, no mention of physio or anything).
Is it common to not get a scan afterwards? and what about the tests for blood clotting disorders?
(sorry for such a long post. :)) Thanks :)
I didn't see a hemo until after my second DVT. At that point, they discovered that the original clot was still there (but it wasn't causing any problems, so not a worry) and they did run a full blood panel. I was negative, so no help there.
There are other threads on this group about whether a final ultrasound is necessary before getting off warfarin. I don't think it is necessarily necessary. Many of us don't have them because not all clots dissolve so what would an additional scan show? Some docs do use them to decide when to take you off warfarin (they WANT the clots to go away), but it doesn't happen for everyone.
Also, with a clear "cause" like BC, most docs won't look further for other causes and run expensive genetic tests. They didn't test me until it was obvious that clotting was a repeat problem and they wanted answers. With your additional health issues, I don't know if testing makes more sense after only one clot. It is a good question for a hemo but many, many people don't get the genetic tests after only one clotting episode...especially if there seems to be a clear cause.
Hang in there ... read some of the other posts on this site ... and don't be afraid to ask the docs questions!
Good luck with your treatment!
A doppler scan of the affected leg, as well as a follow-on chest CT for chronic PE, is appropriate as well before any decision to continue or quit Warfarin.
Being in USA, I was able to get all those tests. I dread what is coming with impending bureaucratcare, in which "civil servants" become the arbiters over people's lives. Maybe I won't live to see the worst of it.