Hey everybody,

HELP... I need to vent and whine and spew a moment.

Just got home from my weekly visit with the Doc. I asked how my test results were. He asked, what test? I'm like, helllloooooo? "Ahh.... the followup Doppler you asked me to do at the hospital (to ensure prevention of a PE), that I did Monday?!" He said, oh... no that's not back yet. However, I rec'd other test results back. GET THIS.... turns out the CT angiogram I did 2 1/2 wks. ago (and the Dr. at the hospital cleared) shows I have a PE too. What the !#&#%$? The good news is that is only a small clot in my lower lung.


I guess this the whole thing is a mute point because regardless of discovering the PE, I've been on treatment since June 21st, so I know that I'm fine and should have no more problems. So I know I shouldn't be irrational, but why do I feel so confused, shocked, angry, and I don't know what...? SIGH....

ARGHHHHH!!!!!
Thanks for listening.

I dont know but I would be upset..a PE would really scare me...but I am a big baby...and I would want to just when the result of the test wold be in and I would ask for him to get them STAT.

Feel better...and try to relax though and have a good weekend..((hugs))
Marica

Thanks for the hug Marica!

I think my hubby and I will take a drive to the lake or something after dinner... that will put me in a great mood!

Hey Brenda

I read your post and reread it again…I am at a TOTAL loss for words! I CANNOT believe what I am reading – how can your doctor be so nonchalant and careless about this!! You are by no means irrational – you have EVERY right to be confused and angry. I would be furious! I am so livid thinking how a doctor can be so casual and say something like … “which results…oh” – what the hell?!?! As you say, you have been on treatment since 21 June … still, you feel angry and upset. The scary part is “what could have been” and I think this is why you feel the way you do but thank God that you are okay – any person would and you have every right to be upset.

To be honest with you, when my GP suspected PE, he immediately phoned the specialist physician (who treated me for the DVT) who in turn said he would meet me at the hospital (due to the previous incident and my symptoms sounded almost 100% that I had a PE). I was pushed through ahead of other people to have a CT scan and was admitted immediately, was on heart monitor and hospitalized for 5 days. The day I was discharged from hospital, the GP phoned me at home to hear how I was.

Also, when I had the Doppler done when I had the DVT, the doctor told them that I would be waiting for my results and that I should go directly back to his rooms to discuss the results and my options. How on earth can a Doppler test not reach him a week later and he makes no attempt to follow up!?! WTF?!?!

I am telling you all this because this is what should have happened and the treatment which you should and could expect. All the people I know with DVT/PE will agree. You are not at the right doctor. I would seriously give him a piece of my mind!! I apologize for venting on your behalf, but this makes me SO MAD!!! Brenda, seriously – go to another doctor. Besides, if the doctor you are seeing is worth seeing, he would not object to you getting a second opinion.

I feel so sorry for you. I can only imagine what you must be going through and the confusion with all this happening and finding out the way you did – without the proper support from the doctor and hospital. Isn’t it strange how you suspected something was up after your Doppler on Monday. I know I’ve said it, but seriously – the hospital should have seen to it that the results got to the doctor the same day.

How are you feeling physically? (I sometimes wonder what is worse – the physical or the emotional turmoil with DVT/PE.) I am not sure, but to be safe, I would suggest to not overdo it with the walking, especially since you were only diagnosed on the 21st June (until you get a second opinion at least). Did the doctor say anything regarding exercise or any precautions you should take etc?

I am meeting with my ex-boss on Monday for lunch. In addition to “catching up”, I want to hear her experience since her DVT and PE a few years ago. She is meeting with her doctor in August to decide whether she should stop Warfarin (she is also Factor V Leiden) – in fact, our stories are identical. Apparently the doctor who treated her is the specialist in the field and she suggests that I phone him next week to make an appointment – just to get a second opinion as to whether everything with me is on track and the (sometimes) achy leg more than a year later etc is normal.

That is exactly what I am going to do and I strongly suggest you do too. Heck, if they tell us the same things, then at least we have peace of mind – if not, thank heavens we got a second opinion! Thankfully it is a small clot and you are on treatment so I don’t want to scare you, I’m merely saying – get a second (or third or 10th opinion until you feel confident and safe with the doctor who will be treating you). DO NOT let anyone make you feel that you are neurotic or “silly” or whatever else, EVER – they have no clue what its all about and they are not the ones living it. Please, please, please see another doctor and take good care of yourself!

Chin up gal, we are here, and together, we are all gonna LAUGH in the face of this stupid PE/DVTs. Hell yeah!!!

Ahhhh thank God you're here!!!!!!!!!!!!!!!!

Thank you, thank you, thank you for venting with me and being so supportive!! WTF indeed!!!!!!! I don't know what makes me more mad... not finding about the PE until 2 1/2 wks. later... or the lack of attention re: the doppler HE ordered because of his concern about me getting a PE now. ( A tad ironic really.) I don't know!

One thing I know is that I'm doubly blessed that I intuited I needed to go to the Dr. before getting on that long flight to Toronto, not knowing that I probably had the PE the whole time. (Or did I?... don't know when I got it!)

I have the heavy/tight chest again in the centre, and was a little lightheaded at one point today, but it was brief and that could all be stress, or my out of whack INR... I'm not supposed to get another (since the 3.6) 'till Mon. So for physical stuff, nothing serious yet... I am vigilant and know what to look for! I went only for a very small walk with Rob tonight... very slow... I'm drained from the roller coaster. Lying on the couch... leg up... don't even know if I need to do that part... it's feeling pretty ok... but trying to do all the right stuff.

I'm just kind of confused Madeline. But on the other hand I know he's probably right... the odds are that it's from birth control, yada, yada...and all the rest of what went into it... as we both did/know... So when those risk factors have been removed I shouldn't have any more. But I'm just mixed up. How did the hospital miss it? Why did we only find out now? It must be pretty insignificant or surely someone would have called me? I don't know... just shaking my head. This morning it was quite the shock. Yes... exactly... "what could have been" if I didn't know, didn't treat out... good grief we're all so darn lucky!

But really? A 2nd opinion? From another GP? A specialist? Where do I start?

Talking to your ex-boss about it all is great... helps that she's had the same situation. You're not Factor V though too are you???

Nobody "gets me" right now and what's going on in my head today.... nobody but you... thank you SO MUCH! It makes me tear up a bit... but it's all good... just happy I'm here. You're awesome!!

YEAH BABY!!! I'M ALL ABOUT LAUGHING IN THE FACE OF THOSE DARN CLOTS!!

Yup, isn't it crap that we have to wonder about all these things. The thing is too, I wonder if the clot in your leg (or part of it) shot loose and moved to your lung - something I think the Doppler you had done on Monday should show. My PE must have been a new clot because I got it months after the Doppler showed "all clear" on my DVT leg.

Good that you took a slow and short walk. I think that is a good thing that you do take it easy now. I know what you are saying that nobody "gets you" right now. It sounds all so familiar. Please know that you can mail me 700 000 times a day if you need to talk, I don't have all the answers but I'm happy to listen and I know what you are going through! I know you are scared and worried and upset and all of these feelings going through your head and its a horrible place to be in.

Yep, afraid so - I am Factor V Leiden..."faaaabulous" hey Clotting and heart attacks in my mom's side of the family (my mom has not had clots - thank God but I told her to get the Factor V test just to be sure of her risks!). It makes so much sense re the smoking and pill I was on considering my family history. So yep, my PET HATE ... no one out there is informed of DVT/PE symptoms etc and we are not told of our risks early enough.

I know you have so much going on right now and probably just don't have the energy to even start looking for another doctor but it will be best for you. I was just lucky that the hospital physician who attended to me is very knowledgeable on DVT/PE. I would suggest that you have a look see on the internet for a Hematologist near you. He can request the hospital / lab to send copies all test results which you've had since 21 June to be sent to him. I think its just good to get that second opinion. It is of course your decision to make and I don't want to push you...think about it. I might also be totally off course regarding the doctor - ultimately, you need to feel comfortable with him. See how you feel in a day or two.

Hang in there sweetie, hard as it is ... as per your blessing "this too, will pass".

I might be on the other side of the world, but you are in my thoughts and hoping that you are feeling okay!!

Thanks for listening! Careful.. I just might take you up on 700 000 emails per day!

Yes... I went back to your old post and saw/remembered the Factor V. Did you get tested for that with the first DVT, or with the PE? Would/should I be tested? My Dad has had blood clots but I associated it with his heart disease. My GP knows this but no one has said anything about it. Ugh. I assumed it was only the birth control/smoking, which it totally could be. But you had all that, AND Factor V. Hmmm....

Also, I had a thought re: the Dr. I had at the Emergency and in followup at the hospital's outpatient dvt program, I realized she wanted a followup anyway. My GP didn't think it's really necessary, but I think I will now! The only issue I have with her, is that she cleared my CT angiogram and only saw a scar... not a clot. Don't know who reviewed it, caught it, and sent the real results to my GP. But at least I can make the appt. and ask to see the ultrasounds (esp. the last doppler) and angiogram, or have them reviewed with me at least... and try to make sense of what's happening. Nothing to lose with her... don't know her... no relationship formed or to keep. At least she was there at the beginning so at least I can hold her accountable for the PE part... and being she's often at the hospital, surely she'll be able to review my file there I'm guessing. She actually in respiratory medicine (on her biz card)... but perhaps a step in the right direction. I think Monday I will make the appt. Nothing to lose. Thanks for the opinion... very valued!

I can't tell you how much better I feel!

Apparently the doctor did test me for Factor V after the DVT and apparently (get this) I tested negative. After the PE, he did another test and this time positive. He reckons that he cannot explain why first test showed negative when in fact I do have the gene. After the DVT I did not even know what Factor V is and that he tested me for it. Go figure...I actually knew nothing about any of it.

It was my GP that pointed out to me that I must under no circumstances be on the pill (after hearing about the DVT) so I stopped. After the PE I was referred back to the Specialist and after doing the test again and showing that I am Factor V Leiden, he confirmed that I should definitely not be smoking or be on the pill.

So yes, I would say that you should definitely be tested (maybe they did but never mentioned it to you) so good idea to make an appointment with her and ask for all the results etc to be discussed with you as you mentioned in your post above. If they did not already do it, they must definitely do the test.

Try to have a good weekend! We woke up this morning to a cold and dreary Johannesburg winter morning. I think this is DVD weather and staying mostly indoors

Ok, Brenda I was checking some stuff out before I did say anything, but I would certainly ask (FORGET ABOUT ASKING) GET a refferal from your GP to a Hematologist because of this carelessness, I am also FUMING x:x:x:x: to hear the fact that you have had a PE and your doctor knew and DID NOTHING about it!!!!
Usually, when I get a Doppler done(which, so far 5 in a year)I wait for the results and bring them myself to my hematologist, so we can discuss about them. NOT A WEEK LATER, that same day. Same thing when I got a CT Scan, we discussed the results which I took back (that took an hr longer)myself.
My hematologist takes care of my INR results, my drug and Sox studies, everything!!! She wants to know everything about anything medical tha happens to me, before I even do it, what drugs my GP cribs me, before I even take them, EVERYTHING. My shadow.

The thing that worry's me is the fact that you clotted while being on
a-coags and got that PE...

When you got admitted ORIGANILLY, did vampires take about 7 test tubes of blood from you? That would have been the Genetic testings...

Gismo, you are right on all points.

Well I have a 25C and DRY fora change, it has been VERY HUMID here lately.

Brenda, take care...

Hey Denis,

Thanks. Well I don't know how long my doc knew, because he only got the results this week, and told me because it happened to be my weekly visit. The test was taken on June 25th, while I was in the outpatient dvt program at the hospital. But I was given the all clear. Only now, like 2 1/2 wks. later am I being told I have PE.

I don't think I'm clotting at all now, but won't know much I guess until they get the results back from Monday's Doppler. Why isn't he asking for it and reviewing it with me? HE did ask for me to get it after all because he didn't want me to get a PE! (The other problem is my Dr. is an hour away in another city from where I live--I moved and couldn't find a closer one--so maybe that's why there's a problem?? The hospital and BioLab I've been going to are here where I live.

I'm assuming my PE (since it was found June 25th) dislodged from my DVT probably before I even went to the hospital. Because I didn't go to my GP until I had leg pain for almost 2 wks., it may have dislodged in that time. The good news is that it must be very insignificant for no one to tell me up until now I guess.

As I was telling Madeline, I'm going to make an appt. Mon., to see the attending Dr. who saw me in the hospital in emerg. and in the outpatient program. I forgot she wanted a followup, and even though my GP said it's not necessary I'm going for it as my next step. (Perhaps she can also refer me to a Hemotologist locally I'm thinking!) The problem is that she is also the one who cleared my angiogram while I waited at the hospital. She just saw a scar... no PE. So who found it then? Did she relook at it? And why am I just finding out now? Lots of questions. Just want straight answers in a timely way... not too much to ask I think!

Oh yeah, and no massive vials of blood, so didn't do any factor v thingy. Will ask about that. My Dad's clots were arterial and not venous like ours (I'm going to see him today and will get more info), so don't know if it has that heredity factor, but suppose I should check since he's had about 4 I think.... one in the aorta.

Anyhoo, on the up side, we're going to a concert tonight at GM Place. Last wkd. my girlfriend took me to the chick concert of the decade... George Michael. Tonight me and Rob are going to Stevie Wonder (who never tours in Van.) Since Rob's a musician, Stevie has been a huge musical influence. And one of our buddies is the sound tech.

Thanks so much for your help Dero!! Your're awesome!!!!
Stay dry in the heat!

Happy weekend to our support crew! Just want to give a quick update to this thread (sorry... man, am I posting a lot!)...

Was visiting my Dad today. He is 78 and in hospice care (at home) with congestive heart failure (he's had a bad heart starting from age 35), but hanging in there and doing well all things considered. (He is one positive thinking guy!) Anyway, here's the thing... I never realized that GET THIS... he's been on WARFARIN for 40+ yrs. Gulp. (I didn't grow up living with him always... as my parents split... so I didn't realize exactly. Plus in the past I connected his blood thinners to only heart disease... duh.)

He's had about 4 clots (that he can remember--he's getting fuzzy), but from what I've read/understand, they are arterial not venous--he had one in his arm, even his aorta, but also in his leg, so we're not sure exactly if it could've been dvt back then, same symptoms... But like my Dad says, no matter what kind it is, and even if we have different "types", a clot is a clot... clotting is clotting. And if we're both doing it, even though his is connected to heart disease, and mine from estrogen, etc., there MIGHT just be the hereditary link too.

Now, armed with the unbelievable information (man, I NEVER realized years ago), I will insist on Factor V testing, etc. My Dad agrees with you all... that I have a specialist, and also that I should definitely investigate staying on anti-coagulants like he did. Hmmm... interesting, huh?!

Anyway, 'nuff about me. Hope you're enjoying the weekend. It is sunny and warm and gorgeous here!

INR news...
Well, had a new INR Mon... just got the results called to me today. Good news is that I went down from 3.6, but too far down because I'm at 2.0 in less than a wk., so if I stay on 5 mg, it will keep going down. So back to 6 mg I go! We'll see if I even out by next wk.

Other news....
Right side is achey again today... including my right buttock again!... and especially my hand which is mild pins and needles for whatever weird reason... yet again...and ALL day... it's been on and off since this all started. Rob says it sounds like circulation to him, but I'm not turning color or anything! Anyway, it's later in the eve. so it's getting better. YAY! I walked twice today so hopefully that helped!

Over and out.

Hey there!

Wow, what a story! Yup, Factor V Leiden testing should most definitely be foremost on your agenda. Must say chances are very good that you will have inherited the gene then – same as me (from my mom’s side).

Glad to hear that your INR is down, hopefully it stays in range now! Mine is also in therapeutic range again – hopefully next week’s INR will confirm that it is back on track so I don’t have to go so soon for the next one. Must say, reading Dero’s posts, it seems like Dabigatran is a lot easier and less troublesome that taking Warfarin. I really hope that the FDA approves it and we can see it on the market by 2010. My doctor also mentioned to me a few months ago that there is testing going on on a new drug which he thinks might be good. I think he must have been referring to Dabi. One thing I will look forward to is not feeling so tired all the time and wiped out! So, lets hold thumbs hey!

PS: The Jorge Cruise book which you told me about arrived yesterday - I'm looking forward to reading it...looks fab!

Hi Madeline,

Yep... for sure will look into the inherited thing... although my Dad's were probably arterial (correlating with his heart disease) not venous, although he did have one in his leg once and it was swollen. Too bad he can't remember! I'll be meeting with my reg. Dr. on Wed., and the hospital Dr. (my backup opinion) on Thurs., so we'll see who says what.

Yeah my INR dropped to 1.7... oops.... all the way from 3.6 in just over a week! So glad I'm upped by 1mg now... hopefully this will get me stabilized. Seems like 1/2mg. would be just perfect, but we'll see what happens.

Considering that Warfarin isn't supposed to have known side effects (says that on my pharmacy insert), many people seem to get them don't they? I noticed that the week my INR was dropping quickly, I was feeling lightheaded and tired.

Anyhoo, I'm off to answer your pm next!

Hi Brenda,

I get that same feelings of tiredness and lightheaded and it seems to happen whenever my INR drops too low. The longer we are on anticoags, the better we get at predicting the next INR result hey

Its great that you are going to see both doctors - will be good to see what they both say and whether they agree. Do let us know the outcome!

Have a super day!
(I'm going to have a quick bath now, go and have breakfast at the Mugg and Bean and then go for some retail therapy)