WOW what a story. I'm glad you made it through and are doing better.
This may sound funny to you a lawyer but I would think of suing that
Doc. Or at least sending him a letter telling him what you think he
did wrong

Welcome and the best of life to you.

Hi and welcome to the boards! Sounds like you did have quite an adventure with clots and diagnosis. You might consider visiting the DVT boards also, for specifics about recovering from a DVT.

I had a couple of thoughts after reading through your whole diary entry.

First, I'm confused why things got so bad with the PE. Hadn't you already been on warfarin for 10 days when you went into the hospital? That should've helped with the PE and kept things from getting so bad...but perhaps I missed something?

Second, it sounds like you've already diagnosed yourself with PTS, but, truthfully, it's a little premature for that. You're about two months out from diagnosis with the DVT and you're still in the acute healing stage. PTS reflects permanent damage and is really hard to assess until you're well past this initial phase. Some doctors will diagnose PTS at six months, but most will wait even past that.

From my own person experience, I've had two DVTs and the first was quite severe and painful. I was pretty uncomfortable for a while, with the worst time being the first 2-3 months. I slowly improved over time and had weird aches and pains probably up until around two years. I'm nine years out now from that first DVT and I don't have PTS. I really have very little outside of the leg being permanently larger than the other one and the occasional tightness (usually when I get too hot).

So, I guess I'm trying to say, that you shouldn't get too hung up on symptoms at this point and diagnose yourself with PTS. You might not wind up with it at all, in the long run.

I know some folks do wind up with scarring from all the blood draws. (Sounds so uncomfortable!) If at all possible, you ought to try to find a lab or a doctor that has a finger-prick tester for your INR. I have a finger-prick home tester that I use and it is pretty reliable. Having access to a finger-prick machine might make your life a little easier. I know my doctor uses the same machine in her office that I have at home. Some labs or coumadin clinics also have the finger-prick machines, but you'd have to do some research to find them.

My focus right now is to get better, I still need to learn so much about everything that is going on. . I also want to stay on point here and not let the conversation slip into a legal discussion. Thank you so much.

Toss, I have very recently directed some of your items to my Pulmonologist and should have answers within a day or two. I have requested my file from the first doctor and want to track the coumadin level, my recollection is that it was low, maybe too low to have good protection. Great stuff on PTS, it was a self diagnosis and I have been corrected on the issue of current problem versus permanent status. It is frightening when you look down and all of a sudden you have a cankle and your calf is swollen to where it was at the start. Thank you for the analysis, the challenges enable and push me to get better explanations.

Hi, A very full account of your problems & diagnosis & it sounds like your recovery isn't going too bad? Some ups and downs, but if you're 1/2 active after a couple of months, you're doing OK. Hope it continues.

One thing that struck a cord with me is how "rubbish" docs can be at checking for PEs once a DVT has been diagnosed, even when there are fairly obvious symptoms. I know the treatment is the same, but you'd probably be admitted to hospital for PEs & monitored, whereas this isn't always the case for DVT. Yeah, CT scans cost money, but if you've significant chest/breathing problems when a DVT is diagnosed, they really should rule it out.

I suspect some doctors and hospitals and even countries may have differing protocols when it comes to confirming a PE after a DVT diagnosis.

One thing I'd like to note is that you may never get an explanation, for anything. That's not negligence or apathy on the part of doctors. It could be that they simply don't have the answers. I would just tuck that in the back of your mind for moments where you may feel some frustration.

Also I have scarring in my right arm vein because I can't draw blood out of my left arm any longer due to a previous DVT in my left arm. You just find a different vein to work with if it's a problem.

I feel very blessed to be employed by and cared for at an all-inclusive facility that encompasses 250 clinicians, all testing centers and a hospital in one facility. My coumadin pharmacy doctor (I have one assigned to me for my whole course of treatment) emails me my results and new dosage for the next week before the end of the business day when I take my INR. Every doctor I see and even the ED docs can see my whole medical record, all test results, all images, etc. every time I go in for anything. I used to be in the nightmare you are, with a doctor in an office and having to use labs and radiology clinics, etc. that had no connection to my doctor and having to inform my doctor that I'd been in the hospital, then try to get the records from the hospital to take to the doc for follow-up. I'd forgotten how frustrating it was.
You seem to have fallen through some cracks in the system. I'm just glad you somehow made it through.
The thing about diagnosing PE with DVT is that usually treating the DVT is the identical treatment for small PE's and doesn't require diagnosing them to cure them. Besides, you can have a CT or V/Q scan that looks perfectly clean and have a clot move into your lung on the way back up the hallway to the ED, so testing is predicated on symptoms. No use doing a study on a non-symptomatic patient that you can't repeat if/when the symptoms begin. Anyone who has significant pulmonary or cardiac symptoms with DVT should be checked for PE, if only because at that point it is necessary to decide if thrombolysis (tPA, etc.) is required to save the patient's life. People who present (like I did) with the pulmonary and cardiac symptoms but no apparent DVT just get treated for PE. They never chase down the originating clot. No need to. Treatment is the same. Why delay treatment and put the patient through more radiation exposure to satisfy curiosity?
I know this is counter-intuitive to a lot of people who aren't in healthcare. I myself (with both parents and two grandmothers with history of PE/DVT) will just have to be satisfied with "you probably have an inherited coagulopathy of some sort, but we aren't sure what and testing is not 100% accurate because we just haven't discovered all of them yet" to help me make the decision to be a lifer on coumadin. Doesn't satisfy my curiosity (especially since I majored in genetics at college before going into nuclear med), but the testing won't change my management, so I just have to do what I think is best with the information available to me.

@April - glad you're here, on the road to recovery and sharing your story. I feel as you do - if we can help just one person benefit from our experience, it helps make the journey worthwhile.

ljhcnmy, Nothing like being treated in-house! Lucky you! My lab switch worked out very well. The local hospital has a stat lab so as soon as I walk in they grab my waiting file and put me in "the chair." Results are very fast; this morning I was tested by 8am and the Pulmonologist's office called with the results a little after 9 am. No bruises from this lab and it seems like the numbers are more accurate (although everyone is frustrated trying to handle my numbers. In the past 7 days I have gone from 3.98 to 2.42 to 2.16 but that is due to changes in dosage to chase stability.)

In my case, an earlier PE diagnosis could have resulted in different treatment. I also would not have had to take meds for pneumonia and the cough and blood could have been addressed better. At the end of the day, I am just so glad to still be here! Thank you for your thoughts.

Yes, you had significant pulmonary/cardiac symptoms with your DVT, so you definitely would have been one that should have had the testing for PE done immediately and perhaps given clot-busters. I was mainly giving information for a lot of others on the board who wonder why no one chased down their DVT site or tested them for PE as soon as the DVT was diagnosed, though their symptoms of PE didn't start until later. The tests used to diagnose PE, whether V/Q or CTA can't be repeated for several days after they are done, so doctors try not to do them until/unless symptoms occur. Plus the patient gets extra radiation exposure with each repeat.

Thanks for posting your trials and tribulations. It is inspiring.

Mike

Thank you Mike. I noticed that you are a PE second timer and a blogger. Please consider posting something about that second experience. While I do not want to go there, it is hard to ignore the number of us who do. I am certain that many on this site have the same interest. Thank you again.

Here is my latest journal entry:
http://www.dailystrength.org/people/3854895/journal

Off to see the pulmonologist this morning. Will keep everyone updated.

All I can say is welcome aboard our weird roller coaster ride from Hell. :) Glad your here to share your experiences with everyone. I honestly think part of the healing process is being able to share what you went through and hopefully being able to help others. We are truly blessed to have each other here and i am constantly recommending this site to so many people not just for PE's and DVT's but so many things people go through and need someone to talk to and tell their stories to, as Forest Gump said. Life is like a box of chocolates, you never know what your gonna get. Blessing ad Hugs
Ferr

Ferr, I have lurked on a few sports boards in my time only seldomly participating. However, this is by far the nicest and most receptive board I have seen, by far. Maybe the pain makes everyone sympathetic but the welcome and sincerity here is so comforting. Hugs to everyone!