Pulmonary Embolism Support Group

This is a great place, sorry though you have to be here under these circumstances. You will have some pain for a while and be SOB, takes time, take it easy, rest and just do one day at a time, everyone is different and it takes longer for some. I am 6 months post and still SOB. The pain lasted about a month or so. The Drs really didnt have a reason for me to have PE's either in the beginning, the last Dr visit he said I do have a blood disorder of some kind. Didnt say what, I find out next month. Hope they find what caused your DVT and PE, I think eventually they will. It might take a few weeks to get your INR regualted, for me was a little over a month. Been stable since, waiting to see how my stick came out from yesterday. I might be on coumadin for life, another thing to be discussed next month. I was 4 months PE before I started to feel better, so dont rush it and rest and do what your Drs tell you to do. Exercise later will help get your strength back, walking is one of the biggest things that helped me. Good luck to you.

Hi Dawn,
yes, I am similar to you, I am what they call Idiopathic DVT, which means that I also failed miserably all the genetic test and I have no prior family history of blood disorders.
In a way I was lucky, because the clot I had in my calf was jammed in my pelvis, otherwise I too would had been in the PE group.
But still, Dr. could NOT give me a reason why I clotted.
We are treated the same way, because we still have the DVT or the PE in your case. In the past years,(I was diagnosed in 2007) I have met a handful of Idiopathic, so we are out there...
As for regulating your INR, some people do take longer to achieve therapeutical levels,so it's not always the med team that is to blame....We have to give them a break every now and then. ;)
Take care and hope you reach that goal of getting better.

Hi Dawn,

Yep, I passed all my genetic testing with flying colors too so they're not sure why I clot either.

The INR will get sorted out. It just takes a while for some people.

Recovery from a PE and DVT is a lesson in pure patience, that's for sure. It's kind of a slow process and the fatigue sticks around for a while. Be kind to yourself and don't get discouraged!

Pssssssst R, you mean that you failed your genetic tests, right?

Hey, Mr Semantics. I see what your saying and I think I've worded it both ways. I was looking at it like, if the tests showed no genetic clotting disorders, that means I passed the genetic tests.

Like everything in life, I guess it's all how you look at it. For instance, at this point in my life, if I had a pregnancy test and it showed I wasn't pregnant, I definitely call that passing the test. If I were pregnant, well, I would certainly say I failed it.

BUT, Dawn used the term failing the test as in no genetic reason for having a clot! That's what I was going with...
:P
I know I can be a tad (thinking of many words but which can I use here, your choice...)
Insert word here...

Hello Dawn,
I am sorry to hear you are in pain also from your PE's. Are they giving you anything for it, I hope so. Right now I am taking way too much Meds. and what is the worst part is they do not get rid of all my pain.
But I have gotten some hope from other members that the pain and SOB will go away. We can all just hope it is soon.
Keep posting, please it is good to hear from others with the same trouble.
Take care of yourself,
mnmmom

A tad... contrary? It's all said with love, dear :)

Thanks for your replys. My inr did come down today to 3.2. Which is great considering it has been running really really high. I did forget to mention that when I was diagnosed with the pe and dvt, I had no symptom but sob. They found the pe by accident. I had a ct scan of chest and right axilla, because we had found a lump and that is what they were looking for, and the found the clots. What a shock, I figured I was sob of breath because I was heavy not sick.

Hi Dawn and welcome to the group. Main thing to keep in mind as you heal is that you are a SURVIVOR! I was diagnosed at beginning of March w/multiple PEs and DVT in my lower left leg. Like you, the only symptom I had was SOB. I thought I was just having hard time getting over bronchitis that I had in mid-Feb so it was a shocker to me when I went to the ER and they first did x-ray to check for pnemonia which came back negative. They did bloodwork and said the results of that and my irregular heartbeat made them suspect PE's so then they did c-scan which confirmed their suspensions. I didn't have any known causes either. My doctor tested me for Factor V leiden which came back negative. Other tests to see if I'm protein C or S deficient have to wait until I'm of Warfarin. I'm to be re-evaluated in Sept and hope to come off Warfarin then so other tests can be done. Like others have said INR does take awhile for some to get regulated. I had mine regulated for a few weeks then the past four weeks it is running high at 3.53.


Take care and blessings,

Tabby