Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
I was diagnosied with a few small PE's in my left lung in February 2009. Did the hospital stay and had some test done as well as specific genetic test that were sent out. The test come back indicating I am positive for Factor V Leiden. I follow up with my current doctor on a regular basis and at this point my INR is stable at 2.6 with me alternating 3.5 mg and 5.0 mg of Warfarin. So I have my blood done every month.
Okay so I need to eventually find a new doctor because mine is retiring soon. I am also on the uncomfortable side with a medicine mistake regarding my Warfarin when I first started being treated for this. I caught the mistake because I make it a habit of checking my prescription before I leave the pharmacy as well as before I take the actuall pill.
So several months ago I make a new patient appointment. Today was the day I meet the doctor. I came away with the conclusion that I have mixed feelings about this doctor. The main part that concerns me is that he is thinking I could use Aspirin over my Warfarin as I only had one risk factor for the PE's (Factor V Leiden). He is getting this information as he reads an article on his computer while I am I sitting there. I question this and he says he will have to read up more on it and let me know. Meanwhile he gives me paper work to have my blood done once a week for six months. Oh and they do not do labs in his office, not even a finger stick for blood. So as you can see this visit was more then confusing. Making the wrong decision could (but may not) have a pretty bad out come.
So yes I need to find a new doctor, although I am ready to rule this new one out. From what I have read and been told by current doctor as well as my oncologist (oncology and hematology) that the Factor V Leiden is a risk factor to keep me on the Warfarin for a very long time if not indefinately. So not one but two other doctors have indicated this. I really don't like taking meds but playing games with this one scares me.
Comments please.
Okay so I need to eventually find a new doctor because mine is retiring soon. I am also on the uncomfortable side with a medicine mistake regarding my Warfarin when I first started being treated for this. I caught the mistake because I make it a habit of checking my prescription before I leave the pharmacy as well as before I take the actuall pill.
So several months ago I make a new patient appointment. Today was the day I meet the doctor. I came away with the conclusion that I have mixed feelings about this doctor. The main part that concerns me is that he is thinking I could use Aspirin over my Warfarin as I only had one risk factor for the PE's (Factor V Leiden). He is getting this information as he reads an article on his computer while I am I sitting there. I question this and he says he will have to read up more on it and let me know. Meanwhile he gives me paper work to have my blood done once a week for six months. Oh and they do not do labs in his office, not even a finger stick for blood. So as you can see this visit was more then confusing. Making the wrong decision could (but may not) have a pretty bad out come.
So yes I need to find a new doctor, although I am ready to rule this new one out. From what I have read and been told by current doctor as well as my oncologist (oncology and hematology) that the Factor V Leiden is a risk factor to keep me on the Warfarin for a very long time if not indefinately. So not one but two other doctors have indicated this. I really don't like taking meds but playing games with this one scares me.
Comments please.
It's both nice and sad to see someone else who has to see oncologist and haematologist. Anyway understanding about Aspirin and Warfarin is that Aspirin affects platelet production and Warfarin interferes with the clotting cascade, or in other words they work completely differently, my limited non-medical knowledge is that people who have a clotting dis-order should take warfarin and that people at risk of heart attack or stroke should take Aspirin.
I am however not up to date on medical research and it maybe that for certain clotting dis-orders Aspirin is OK, but like you said be very sure and don't take chances with this.
Mark
FVL is indeed a risk factor for long-term warfarin use, depending on specifics of the case. FVL heterozygous (as opposed to homozygous) is the less severe form. Other factors may include the extent of chronic damage, presence of other blood mutations, or having more than one thrombotic event.
If you are looking for a doctor, it appears some of the facilities listed at http://www.acforum.org/clinics_us.htm may be colocated with general practice. You definitely need a provider who is familiar with DVT/PE.
If you are going to be on warfarin long term then I and many others almost swear by the positive changes of going self-test. At the very least, you will require fewer medical appointments and will regain some degree of independence.
I am heterozygous as far as the Factor V Leiden and as mentioned it is less servere then homozygous. When I was diagnosied my blood was tested for lots of things and Factor V Leiden is the only thing that came up. I was actually diagnoised by accident as I was at the ER for something else. So I may not have even known about this if I had not gone that night.
As far as blood testing I have to be extremely careful where it's draw from. I have a compromised lymph system (which happend during the surgey for breast cancer when lymph nodes (20 total) were removed and have a condition called Lymphedema in my right arm with signs of it showing up in the left arm. With this condition BP, IV, and needle sticks are a no. I go to physical therapy when it get worse, wear compression garmets, do special exercises and home massages to the arms and have to watch the arm(s). Thankfully I have only had one case of cellulitis. So the home tests do sound promising. More details would be helpful. I assume there would be some sort of training and a reporting system per say.
I have decided this new doctor is not for me. I the patient should not know more then he does. I am also not sure that I like the ideal of blood test each week either. Once stable how often are we supposed to hav e our blood tested?
I probably included too much detail in http://www.dailystrength.org/c/Pulmonary_Embolism/forum/7372099-inrhome .
As of this week I made my last visit to the clinic after having run tests there and at the doctor's side-by-side with the meter. At the clinic they tested 3.0 with a blood draw and I tested 3.0 with the meter.
One of the benefits of using the meter is that you can have frequent testing but with far more convenience than the clinic. My insurance covers 12 test strips every 90 days, which works out to once a week with an extra day here and there. It takes minutes to get results with one finger stick. It comes with a training video, which was sufficient to get me started. The over-phone training with a nurse was still helpful. She helped improve my lancing technique and explained getting just the right size drop for the test strip.
With short and frequent tests you can avoid complications by keeping more frequent tabs on the INR, just like the healthiest diabetics manage their glucose. The test seems so effortless that it would not be a pain to do it daily, much less weekly.
Once you have a stable INR most clinics start spacing the tests out to twice a month, then once every 4-5 weeks or even longer. If you change any meds, go on a diet or get sick or something you will need to monitor your INR again and maybe stabilise it at a different level before starting to space out the tests again.
If you do have a stable INR I don't think weekly tests would be necessary. I am not a healthcare professional, though, so this is something you would check with your new doctor (one with experience of this).
Btw, the way it works here in the UK where I am, my normal family doctor doesn't actually have much to do with my anticoagulation treatment. I have all that done in a warfarin clinic at the hospital, where they monitor around 3,500 patients so have a lot of experience with this. They also have their own specialist nurses and doctors there.