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 am actually posting/asking this about my father... I have been through all the tests, and so I am curious as to protocol and what I have always thought it to be. Bit of a long story, sorry. :)
So, shortly before Thanksgiving of last year, my Father started developing some problems. And again, I apologize, some of this may be TMI. He was having trouble urinating, and apparently it had been ongoing. However, he also had major swelling, redness, and pain in both of his lower legs/feet. I told him those were all signs of a DVT, but his PCP was sure it was due to fluid back up. He finally got to the point where he couldn't go at all, so went to the ER where they determined he had an enlarged prostate and need some minor surgery. They did check for DVT's, apparently didn't find anything, yet had him on oxygen as well as lovenox injections. What should have been a simple overnight stay turned into almost 2 weeks. They finally sent him home, without the lovenox, and still not sure why they put him on it or why they took him off it. I am assuming they did so as a precaution.
Not even two weeks later, he was at home with chest pains and shortness of breath. He went by rescue to the hospital, this time a different one (thankfully!). There, they discovered he had DVT's in both legs and though they could not do a cat scan because of kidney problems, were very sure he also had PE's. He again was put on oxygen and lovenox, and started on coumadin, and between the hospital and a nursing home type place, he was there for over a month.
Finally getting to my question. I asked if his doctor, or the hospital, ran any of the tests, which I thought were the norm, especially given my history (I tested postive for a few disorders). His doctor told him no, it was not needed, and he would be on coumadin for the standard 6 months. Honeslty I thought all PE's/DVT's, especially with no obvious cause plus family history, were cause for testing. Am I wrong? Personally, I think he should push the issue but he is a stubborn old man! LOL Also, his PCP took him off coumadin becaue after only a month he was not in range, and put him on one of the new meds. Can't recall the name, but I know it is not Pradaxa.
The whole thing just seems a bit off to me! Thoughts anyone?
So, shortly before Thanksgiving of last year, my Father started developing some problems. And again, I apologize, some of this may be TMI. He was having trouble urinating, and apparently it had been ongoing. However, he also had major swelling, redness, and pain in both of his lower legs/feet. I told him those were all signs of a DVT, but his PCP was sure it was due to fluid back up. He finally got to the point where he couldn't go at all, so went to the ER where they determined he had an enlarged prostate and need some minor surgery. They did check for DVT's, apparently didn't find anything, yet had him on oxygen as well as lovenox injections. What should have been a simple overnight stay turned into almost 2 weeks. They finally sent him home, without the lovenox, and still not sure why they put him on it or why they took him off it. I am assuming they did so as a precaution.
Not even two weeks later, he was at home with chest pains and shortness of breath. He went by rescue to the hospital, this time a different one (thankfully!). There, they discovered he had DVT's in both legs and though they could not do a cat scan because of kidney problems, were very sure he also had PE's. He again was put on oxygen and lovenox, and started on coumadin, and between the hospital and a nursing home type place, he was there for over a month.
Finally getting to my question. I asked if his doctor, or the hospital, ran any of the tests, which I thought were the norm, especially given my history (I tested postive for a few disorders). His doctor told him no, it was not needed, and he would be on coumadin for the standard 6 months. Honeslty I thought all PE's/DVT's, especially with no obvious cause plus family history, were cause for testing. Am I wrong? Personally, I think he should push the issue but he is a stubborn old man! LOL Also, his PCP took him off coumadin becaue after only a month he was not in range, and put him on one of the new meds. Can't recall the name, but I know it is not Pradaxa.
The whole thing just seems a bit off to me! Thoughts anyone?
-
Look at what my best friend did with my picture!
-
We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
They may have put your dad on Xarelto. Ultimately it's your dad's choice to pursue questing his doc on the testing, but I know as his daughter that must be making you crazy.
Also, I agree on why they may not be considering it, but from what I can tell, he had the clots prior to the actual surgery. I don't know that for a fact of course, it just appeared that way. I don't know, just not happy with the treatment thus far.
I mean, my husband has a long family history of Factor V. His dad has clotted, his aunt and a cousin both have Factor V, his grandfather died from clots in his 40s. BUT, my husband has refused to be tested because it could make it really hard to get insurance later in life for long-term care. Its possible your dad is being non-commital because he doesn't want to shoot you down but he's also got some worries about what being diagnosed with a genetic clotting disorder might mean for him from an insurance or financial perspective.
Or, maybe, he just doesn't want to know. With all the stress going on, he might just not want to face having ANOTHER permanent health issue.
With the response from the doctors, it sounds like they really think that they have a solid cause for his clots, so you ought to try to find out what that is. Maybe do a little more information gathering and then approach this topic again with your dad.
I mean, they can't do all the tests while he's on thinners anyway (I assume the other thinners can affect results like warfarin does) so he couldn't even be thoroughly tested for another six months. This doesn't have to be decided right this second and, if he is feeling overwhelmed by it all, you might get a better response to tackle the topic again with him in another couple of months.
My Dr told me that once they find a probable cause, like being on hormones, or pain in the legs, or recent surgery, they stop looking and just assume that was it. Sounds like this is what happened with your Dad.
Best of luck to both of you!
In terms of your father not being very aggressive with the doctors, I can promise you that not feeling well can really affect how much energy you feel you have to push things. I'm usually a persistent person, but after questioning some things early in my search for a diagnosis of DVT, I was just too tired to continue along what was an apparently fruitless path. I really needed someone else to stand up for me and push for more testing and answers, and that's probably something you could really help with right now if you're accompanying him on any of his appointments. Or if you're not, maybe try offering to be there so you can help.
If I were personally in this situaton, based on experience my family has had, I would be looking into kidney issues first, then if he's negative on that possibly pursuing testing for blood disorders if you still feel like that's what you'd prefer, and that seems to make sense to me considering you said you tested positive on some things, especially if those are the types of disorders which would cause long-term anticoagulation to be necessary.
I'm not sure I agree about the aftercare. I mean, once your INR is stable, there really isn't anything else the doctor can do to hurry along healing. Doctors aren't going to insist that you come in and pay a co-pay just to ask how you're doing.
At some point, I really think it is up to us to push if we have questions or we don't feel like we're improving ... I mean, for those of us who have had other things go wrong after PE diagnosis, we'd LOVE to have fewer doctor's appointments and follow ups. If your doc isn't insisting that you come back (and why would he if you have no other issues?), then count your blessings.
John
I was in the ICU for three days and in the cardiac unit for 4 days and then I was discharged and told to enjoy my life. Well, frankly, I didn't really hear that, and got so wrapped up in my head about my situation, that I just assumed I was a sick person going forward. That isn't the case.
It DOES seem like there should be bells and whistles and specialists and tons of doctor's visits, but basically once they get you past the critical stage (getting diagnosed), it is really just waiting game. I didn't understand that with my first DVT, but then with second DVT and then with the PEs, I did see how it all kind of came together...
I think if you're worried about your progress, you should check in with your doc. I know I did several repeat trips because of anxiety and other symptoms I couldn't quite identify. She was very patient and she told me to come back when I needed to. So, if you want to check in with your doc for your own peace of mind, go for it, but generally they won't ask you to come in otherwise.
Pretty sure we're way off the original topic of this thread ... sorry 'bout that!
In terms of the after care, my only issue really was that I didn't feel things were explained enough, but, that is also partially my fault. I was not very aggressive. All the different doctors has me lined up for all the tests, including checking for cancer, I was all set with my INR fairly quickly, so I pretty much just sat back and let them take care of everything. Honestly I think it took quite a while for the shock to wear off for me.
As for my father, poor thing just got out of the hospital yet again. The first time he was in back in November,(different hospital) he ended up with C-Diff, and despite treatment, it has not fully gone away. Last week it got bad enough that he ended up back in the hospital for another4 days.
Anyway, good point about the kidney/bladder issues. At one point during his second stay, he did have clots in his bladder and they kept having to irrigate. As for any testing, I highly doubt he will try to do anything about that. I think in his mind right now, the clots are not the bigger issue. His major discomfort with everything else going on is his priority, which i can understand. I'm not even saying he should get them done, I just was surprised they didn't. I do however think he should push to go back to coumadin as he is a bit nervous about this new one he is on. During this last hospital stay, they took him off it and put him back on lovenox in case he needed emergency surgery or anything. I think that is what concerns him most.
Is he talking to his doc about his concerns with Pradaxa? I wonder if they're choosing that drug for the same reason they put him on lovenox, because if they need to do some kind of procedure, they can do to straight away. I wonder too if they're concerned about his ability to maintain a therapeutic INR given his other health issues?
Yeah I have been hearing some horrible things about that CDiff. I didn't even know what it was prior to this. He couldn't even leave his house it got so bad.