DVT Diary from Vancouver, BC

Hi everyone,

I am sad to be here, yet happy to find you!

Newly diagnosed, my story/diary (from Fri. to now) is this:

I'm 41, looking and feeling healthy and vibrant. I woke up one day to pain in the back of my lower right leg. It felt like pain throughout my leg, and at the time I couldn't tell exactly where it was coming from. But I wrote it off to having slept on it wrong, or perhaps bizarrely pulling a muscle in my sleep. I carried on with life, although I babied my leg from time to time walking, and climbing the stairs at home. As time went on, the pain and aching were more intense and constant. The pain was in short order identified to be behind my knee, although over the course of two weeks the pain moved down. (I assumed this was my leg's way of "working it out".... little did I know that my clot was growing/spreading). At the end of 2 wks. (just this last Friday, June 20/08) I decided to go to the Dr., because a) I wasn't feeling on my game and b) I was to board a plane to Toronto yesterday (Mon. June 23) a.m. Upon seeing the Dr. (a substitute as my Doc wasn't in), he suspected DVT right away, and said that I wasn't getting on a plane but going to the hospital asap to check for a clot. (He was not helpful at all, didn't answer my questions, and I assumed I was getting checked for a clot OR DVT--whatever that was)

After arriving at Emergency, I was rushed though past everyone (which was alarming in itself) due to the note from my Dr. stating potential DVT, then I was pre-diagnosed and, since it was the evening by this point, after the vitals and bloodwork, I was given the thinners injection in my belly, and asked to come back for the Doppler ultrasound first thing in the a.m. I was told not to touch my leg, and they definitely scared me, as they were worried it would move since I had it for so long.

The next day (Sat.) a.m. I was back at Emergency as required, had the Doppler, and it was confirmed that I had a clot from knee to ankle. Apparently this was serious business due to the duration of me having it. More bloodwork, another injection, and prescription for Warfarin. Was told the hospital pharmacy would be calling me everyday for a precise dose, and that my recovery would last quite some time. I realized then (as I'm sure many of you did) that even though I caught the clot hopefully in time, that this was ultra serious still because this wouldn't be over for awhile. (Warfarin dose today 8 mg).

The reason for my DVT, they suspect, is that I've been on "the pill" my whole adult life. They said I must stop taking the pill immediately. Great. After being on it my whole life, now what? I'm going to feel like I'm back in high school once I go back to my Dr. to discuss options. Children have never really been part of my mission or vision, so now I'm stuck thinking of all the decisions that go with that... talking to my husband about a vasectomy... This whole DVT thing has such life changing impact. GOOD life changing, because I know it's healthy, but so immediate that it's a bit of a shocker at first. I'm too stunned to even know what to do yet. Other risk factors: PLUS I've been a smoker off & on for much of my life as well (so of course I quit that too--coupled with the messed up hormones from stopping the pill mid-cycle, and I should be a bowl of laughs soon). Then, afterwards, once I read the internet and tried to educate myself, I realized that my Dad had clots quite a bit--which I assumed was part of his heart disease, which I don't have--so that is yet another risk factor for me. Also, I have a habit of standing (speaking/teaching) for 8 hours in a row, or sitting at my computer writing for loooong stretches in a row. Add all of this with the fact I never drink enough water, and well, I guess I was a time bomb ready to go off.

Sun. a.m. back at Emerg., more needles--soon this will be "same old, same old". INR=1.1 need to get up. Warfarin= 10mg tonight. At 2:00 a.m. woke up to stabbing pain in head. Frightened me, but after Tylenol and a short wait, was able to go to sleep.

Mon., This time, since the weekend was over, I now longer had to go to emergency, but got a new procedure to go the the day unit for my vitals, bloodwork, and injection. Due to the stabbing head pain from the early morning, they ordered me a CT scan. (Which I never heard back on, so all must be good --- phew!) They told me that I would be taking Warfarin for 6 months... yikes. Today they also explained the whole green vegetable thing--yes, Brenda you CAN still eat the brocolli you love. They told me to buy a electric type shaver, unless I am ultra careful and nick free with a regular razor... yeah, no, I am not perfect, and at this point a little paranoid... so I opted to buy the new wet/dry one. Also, they recommended I pick up a medical alert bracelet, and get "blood thinners" engraved on the back. I found and picked up a women's one from London Drugs, but after going to the engravers, saw they had more delicate ones (who knew?), so got it there instead and returned the other. (INR only 1.4 still, so Warfarin 10mg again).

Tues.--TODAY. Same old drlll: blood pressure, temperature, needle taking stuff out, needle putting stuff in. (By the way, the hospital is making a mint from what I've paid alone for parking in these 6 days--Vancouver is not cheap). They asked if I quit smoking. I said yes, on Sun., cold turkey, so they gave me a Nicorette sample pack. I tried to turn it down, but they said just in case. Hmmm... thanks for the vote of confidence. (I bought Dentyne Blast chocolate-mint gum today instead... a little yummier... thanks anyway). Also bought sugar free gummy bears (a girl has to do what a girl has to do), a new fancy schmancy pill holder for my daily Warfarin dose, for my purse, (to try to make the whole pill experience a little sunnier), picked up my newly engraved medical bracelet (am trying to look at it like, "Yay--new jewelry!"... pathetic perhaps, but whatever gets you through the day). I am in a MUCH better mood! (Can you tell?) Feeling my old spirit come back now. Not so shocked, confused, or scared... and my pity party is over for a bit (probably until tomorrow's needles). PLUS I FOUND DENIS AND I AM HERE!

I am shocked by the lack of awareness in Canada of DVT and feel like I'm on a mission to get it out there. I am here to do whatever I can to help Denis and any of you do that. Please don't hesitate to contact me anytime, for that, or just to chat. I'd love to hear from you!

Take care everyone. We all are alive today because we have our personal purposes and missions to accomplish. Live life as if today is your last. And share your light with the world.
Hugs,
Brenda
brenda@brendablackburn.com

Hi Brenda

Let me start by saying that you are very brave and well done on giving up the smoking. Our stories are so similar. I must say, you must have been so scared when you woke up with the splitting headache too on top of everything else you’ve just been through. I’m so glad for you that the CT scan did not show up anything!

I know how overwhelming all of this is. You feel okay (apart from a sore leg) and you see doctors and medical personnel rushing about to see to you. I must say it is only much later that I think I fully grasped the full implications of all this. I did not allow myself to think about it too much or to absorb all of it.

What range does you INR need to be? Mine is 2.0 – 2.5. I find it interesting to see how people’s differ even though we have the same disease. I also take 10mg of Warfarin every day.

Just like you, I did not pay much attention to other family members that have heart disease and also attributed his clots to that as well as the high cholesterol which I don’t have. Coupled with not knowing how lethal the pill and smoking is when it comes to DVT and PE. I was very annoyed when my niece was prescribed the pill by a doctor and again, no mention made to the dangers. Fortunately she does not smoke but I advised her to go for a Factor V Leiden test – best to be safe and to know her risk factor.

This is such a life changing condition (as you’ve said!) yet there is so little awareness of the disease (in SA as well).

Thanks for sharing your experience and for joining the Forum. Its so great to be able to learn from other people’s experiences!

Look forward to hearing from you again and keep well!

Regards
G

Hi G!

Thanks for your support!

Well, the no-smoking thing is not easy (ugh!) and it's only been a few days.. maybe I'll have to succumb to some help with that after all... otherwise I will eat us out of house and home! My husband has been away during most of this whole ordeal, and has quit too, so once he's home perhaps I will be more occupied and it will help!

Yes, this whole thing is a little scary and definitely overwhelming. You must have been put through the ringer when you found about the PE on top of everything. You sound like you've dealt with it so well... as well as anyone could. You are a great inspiration!

I just had a PFT (Pulmonary Function Test) today and get a CT Angiogram tomorrow to rule PE out for me. I don't have sharp pain though, but do have tightness/heaviness in my chest between my breasts (which I thought I better report, just in case) & I think it's a touch of asthma acting up... crossing my fingers. My PVT was good... my lung output was good, just have a little swelling/inflammation but that person said it was prob. my asthma (I have very mild) acting up because of what's happening in my body. We'll see what the Dr. says and how the CT goes tomorrow. I feel pretty good though... just a little paranoid I suppose!

I can't believe they're still giving out the pill like it's candy, without SPECIFIC warnings and symptoms. For example... at least I understand the symptoms of heart attacks, strokes, etc...... but DVT? Had no clue!

The great news: my INR is now up to 2.1, so they are going to discharge me from the outpatient day program tomorrow. So I'll be meeting with my family Dr. on Friday & we'll take it from there I guess. I was on 10mg, but reduced to 7mg now... so we'll see how it goes. How long have you been on 10 mg, and for how long??

Will catch you later,
Have a great day and thank you for being here!
Brenda

Hi Brenda

I hope hubby is back home with you - terrible that you were alone when all this happened and well done for being so brave! I'm thrilled that your INR is in range now and that they lowered your Warfarin dosage - fabulous news!

I have been on 10mg for most of the time that I've been taking Warfarin - if my memory serves me, about 2-3 months after starting Warfarin. Actually my doseage is 10mg, 10mg, 7mg and so on (for about the past year now).

What did the doctor say - was the tightness in chest in fact due to Asthma as you suspected? Glad you mentioned it to the Dr. - best not to take chances. Hope you are feeling better?

Have a fantastic day and do let us know how you are doing.

Regards
Madeline

Hi Madeline,

Thanks!

Yes, last I left the hospital I was at 2.4 and on 7mg. I went for INR before the Dr. Fri., but he said if he didn't call me with results, then it meant to just stay on 7mg until my next visit in a wk. (this Fri.) So I guess all is good in the Warfarin dept. You were on quite a high dose for quite awhile. (Which was probably very good to prevent a clot spreading.) Everyone is so different when it comes to those precise dosages.

Yes... thanks... it was just as I thought... it was asthma... they suspect from the stress (physical/ment/emo). So I am greatly relieved, but grateful that they wanted to be safe and check anyway. Every a.m. at the hospital, they would ask for any usual symptoms, so they were very on top of things. That was an out-patient DVT program.... unfortunately the coordinator said the hospital is looking at closing it down, and asked if I would write a letter. I said sure... so I have to send that off this week.

But enough about me!!! How have YOU been doing?
B

Fabulous news! Glad all is well with the INR and that it turned out that asthma was the cause of the chest pain and not PE. Always something to be grateful for hey!

I’m doing very well thanks B, the blues have left me – whoohoo!!! It is a very busy time at work now and for the next two weeks which is great, keeps me busy and helps me focus on other things.

Going for a follow-up INR tomorrow and I’m hoping that its back to normal so that I only need to do my next one in a month’s time again. It was totally out because I decided a diet was in order hehehe. So this time round, I’ll have to do the diet thing the healthy, normal way instead of starving myself

I have my INR and dosage done at the blood laboratory which is very helpful and a lot less troublesome than having to go to the lab and then to my doctor every time. They in turn, always send my results to my doctor. I sincerely hope that they will not close the out-patient program and your hospital. I’ll hold thumbs!

PS: Must just tell you, every morning that I put my Medic-Alert bracelet on I have to giggle at your comment “yay, new jewellery”. I admire your spirit and it lifts me too.

Have a super-duper day!

Bye for now,
Madeline

Yay! I'm glad the blues are gone! Me too! Glad to hear work is busy... what do you do?

Hope your next INR is good. Yeah... I was wondering about that... I want to lose 5-10 lbs and was wondering what might happen. I guess if we were to lose 5, then report to Dr. for adjustment? Yeah, starving's not a great way! I've been walking every day (until something hurts ), which is always works the best for me. Snacking is a whole other thing with the whole no smoking thing!! But will try to chew gum instead! OH-- have you ever heard of "8 Minutes in the Morning for Extra Easy Weight Loss" by Jorge Cruise? (He's written others since, but this is better because each full colour page is an easy to follow picture exercise and no equipment necessary.) I call them 8 minute moves. They are like calenetics I think... holding a move for 1 min., then switching sides, arms, or legs. It takes a week or so for me to get into it, then I start to feel awesome. Don't know how it works when it's so simple. Plus they have healthy diet suggestions in there too. I'm not a huge fan of exercise so this, with walking (I listen to podcasts on my iPod Shuffle!), works well for me. Speaking of which I should get my butt in gear and get out there in the sunshine!

Today's Canada Day , so we're going to a BBQ later with some friends. Should be fun, and no worries... I will lay low from too many leafy greens, or cocktails!

Thanks for your P.S. ... you lift my spirits too!! Thanks so much!

Have a great day!!!
Brenda

I work for a stockbroker. I manage the templates and design and layout of the research reports written by the analysts. I really enjoy the environment and must say that my boss has been very understanding during my two incidents and the time I needed to take off work.

Must say I have also taken to the walking thing. My boyfriend and I recently got two pups (Pekingese and a Pug) and we take them for a walk whenever we can in the park opposite our home. I would love to go more often but it is too dangerous to walk alone so we only go on the days that my boyfriend is home early enough from work. It’s a good thing too because I did not get exercise, sitting in front of a pc most my life. Our dogs give us so much joy – I cannot imagine my life before we had them … they are so much a part of our lives now. You can see we don’t have children yet lol, we are constantly buying them toys and treats

No, I haven’t heard of the "8 Minutes in the Morning for Extra Easy Weight Loss" book yet. Thanks for recommending it though. Good timing too as I am about to place a book order. Look forward to checking it out! Lol, yup … starving is not a good idea (used to only eat at night), but then my body did warn me…I felt rather sick and lightheaded so I knew my INR was going to be way out.

I have just checked out your website - what a fascinating and rewarding job you have!! Will read more tomorrow when I am more awake but for now my bed is calling.

You enjoy the sunshine and BBQ , I’m off to bed soon (its 21h50 on Tuesday evening here).

All the best!
Madeline

It must be pretty interesting working for a stockbroker! Does that mean you're a savvy investor too? Does his magic rub off? Glad he's so understanding, that is such a big help!!

Having to walk the dogs is a great excuse for a walk!! I can't believe you have a Pekingese and a Pug... tooooo adorable!!! There are 2 pugs on my walking route, and if I see them in their yard, one of them always has clothes on... always different. The day he had a hoody on I howled! I used to have a Jack Russell Terrier (the kind with longer legs--not the weiner kind, and crazy long fluffy hair) years ago (in a diff. relationship before my now husband).... his name was Eddie and he was a riot... I miss him a lot (he was my baby!), and often contemplate getting another pet. They are so lovable and have such little characters, like wee little people! And they are very cathartic and entertaining so they help when you need cheering up!

Yeah... no messing with your INR girl!! Light headed is not good... don't want to be passing out!!!!!!!

Thanks... re: my website... I worked f/t in the biz for years and years, and left "normal"(?) employment last year, to take time off to finish my "big" book (waiting to publish it at the moment), and continue with p/t speaking/training. It's been the best year ever!!! I was just getting to the point of feeling like I was in a rat race here, and wanted a little more freedom. This is the first time in my life that I've ever done anything like this, and luckily my husband is supportive of my endeavors! Thank God!!!

Happy sleeps! I'm off to get food ready for the BBQ. (It's 1:15 p.m. here.)
Cheers!
Brenda

LOL, I wish...best I stay way clear of investing I'll stick to what I'm good at

I so know how you feel. After my divorce a few years back I moved into an apartment and I was thus also forced to give up my Bulldog. I miss her terribly ... worst is that she was always with me and followed me everywhere. I was forced to leave her with my ex. I can thus so sympathize with you. Those little Jack Russels are adorable and have such attitude too Really cool dogs.

Ah man...I can SO recommend that you get a dog again! It is oh so worth it and as you say, they are so good at cheering you up. These two of ours give us so much joy - they are adorable and such cute little personalities. LOL @ the Pug you see on your walking route - sounds like he has a full wardrobe already hehehe.

Good for you for following your dream and well done...second book - that takes some doing!! Congrats!



PS: I ordered Jorge Cruise's book today - I'm looking forward to receiving it.

Hi all,

Can't sleep with an achey leg (you know how that goes) so thought I'd stop in and "chat" for awhile.

My update:
It's only been since June 21st since my confirmed diagnosis (which was 2 wks. after symptoms), and everything is going really good considering it's been such a short time. During last week, one day I excitedly realized that I was able to walk normally during my neighbourhood walks--woohoo! Still trying to listen to the hospital and not overdue it (esp. because things are up and down), but I'm trying to walk at least 30 min. a day. (I'm not doing as great with elevating my leg when sitting though, hence the night aches I think.) My INR is up to 3.6 (for me is needs to be between 2-3), so of course my dosage has been changed.

As per my family Dr.'s orders, I was back in the hospital today for a followup Doppler (he wants to compare with the first). I was a little concerned because she spent way longer on it then the woman who did my original ultrasound (almost an hour today actually! She took a whack of pics which I was surprised at. They are very thorough which is awesome!!) The good news is that it doesn't sound like it's spread any higher (insert big, gigantic sigh of relief here!!), because she said she was letting me go home, but of course she couldn't tell me much as she wants me to see my Dr., which I will be on Fri. Then he'll relay what they saw in the rest of my leg. Funnily enough, both ultrasound techs. asked if I'd had this before... both with the same weird tone of voice... Why? Do my veins LOOK like I have?? So far no one has gone into any depth and showed me an ultrasound or explained the clot(s) exactly, other than that it's knee to ankle, but by the sounds of the ultrasound tech. there may be more than one happening. ??

Also, when I see my Dr. I have to see how soon I can fly long-distance, as he said he doesn't want me flying for awhile. (I guess because mine's all lower leg). ? I want to fly at least in Sept. Hmm... I suspect he might make me wear the compression stocking, which he has brought up (not for flying, but for future aches in my DVT leg).

In other DVT news...
I'm going to do a DVT edition of my newsletter for Aug. Filled with info, resources, etc. Will let everyone know when it's up if you'd like to take a peek. If anyone would like to write a small story for it, (which would definitely make it more real and personable to everyone), please don't hesitate to let me know: brenda@brendablackburn.com.

I also wrote my local hospital in support and thanks for their DVT Outpatient Program, as the Coordinator said that it might be shut down and was looking for letters of support. Hope this helps keep it open!! I will look into talking to some local media, which will help keep the pressure on and bring up more public awareness.

In my "regular" life news:
My "big" (in comparison to my first mini pocketbook) non-fiction book has gone to Washington for paid evaluation (content edit) by someone who has been in the Mind/Body/Spirit book business for over 2 decades. I'm crossing my fingers!


Well, I guess I'm off to do a little Internet surfing... my leg (and brain) is still not ready for bed... it's going to be another night owl night!

Hey there Brenda,

Urgh, this INR thing is a pain in the "you know what"! Mine was also 3.6 - going again tomorrow (one week has passed since the last one). Hopefully it will be back in range.

Sorry to hear the leg is keeping you from sleeping! Will be interesting to hear what the doc says on Friday - hopefully not more than one!! Thankfully it has not moved which is fabulous news!

I have not worn the compression stocking yet - my doctor never recommended me wearing it. I wonder if I should not look at it though seeing as my leg still hurts, more than a year later.

I'm a little neurotic about flying long-distance. My boyfriend is keen to go and visit his brother in the USA but as much as I would LOVE to go, I'm a little bit anxious about the long trip. Will see what happens, if we do decide to go I will first go and see the doc to hear what he says and do the whole Clexane thing too.

When do you hear regarding your book - ultra exciting I must say. I'm holding thumbs!

[stern voice] --- Keep that leg elevated!

Gotta run...chicken in the oven and veggies on the stove. Bye for now

Hi Madeline,

So you're INR is the same.... yeah a pain indeed.. my Dr. had me skip a day, then go down from 6 to 5 mg. so we'll see how that goes when see him Fri., then do my next bloodwork on Monday. (Perhaps we need to add a few green vegies in to help! Or as a DVT patient calls them "vitamin klot vegies")

(Annemarie if you're reading this, how is your levels?? Yours were so high... been worried about you!! Let us know.)

Yeah, the no sleeping thing has been weird... my leg's not in pain, just achey. Especially behind my knee yesterday, because of the long ultrasound and them pushing and prodding it. How is the pain in your leg? Achey or ??

I'm not too worried about flying because I figure I'll get an aisle seat so I can move my leg about, and also because I think since I haven't had PE maybe I feel a little safer up there. (Hopefully that doesn't give me a false sense of security, because I know you got yours after everything was apparently all good and better, which is crazy. Ugh!) I'm so glad you are okay!!

So what is Clexane by the way?? Haven't heard of that one yet! Is that a different type/dose they use for patients flying or ??

Aye, aye Captain... will elevate my leg! hehe Have to smile... thanks!

Enjoy your chicken... it's making me hungry and it's only 9:54 a.m. here at the moment!
Have a super duper day!

That's it - achey .... yup, that's how it feels! hehehe... English is not my mother tongue so I am not very articulate at times and battle to express myself correctly.

Clexane (also known as Lovenox) injections is what they give you to prevent more clots from forming. You inject yourself in the tummy. I had to use it for 5 days after my DVT was discovered and again for 14 days after my PE.

I read in the "100 questions and answers...." book (which I saw you also ordered - good girl ) that they prescribe it to you a few days before and after you fly. Also heard of someone else who always gets them before she flies long distances.

Also, when you are pregnant you cannot take Warfarin as it goes through the plasenta and can harm the baby. During your pregnancy they then give you Clexane injections to inject yourself daily instead of Warfarin. This does not go through the plasenta so no harm to baby. Also, the effects of Clexane is much easier to reverse than Warfarin. If you go into labour prematurely, they inject you with Vit K to reverse the effects whereas Warfarin takes 5 days to get out of your system.

Strange the time difference hey Its 19h20 here now. Its winter here so I'm sitting next to the heater.

Hope you sleep better tonight!

Ahhhhh... okay... I wonder if it's like Heparin injections then... that's what I had for 5 days after I was sent to the hospital for diagnosis. Thanks so much for the heads up... I will check with my Dr. on Fri. since I have to book my flight soon and want to get the go-ahead.

Glad to hear that DVT book is a good one! Something screwed up with my book order, and I have to do it again. Hopefully I will get it sooner than later. I also just ordered a DVT pin, but it doesn't say DVT on it.... then saw Tom (retirednavy)'s post that he has the Coalition's DVT pins which we can't get in Canada, so I'll have to see if I can get one from him. Determined to start wearing it when I can... (on any clothes that the pin won't wreck--they need magnet ones)... to create conversation and awareness.

Wow--it's winter there! I didn't think about that!! Here it is summer and toasty! We've had a cool one so far, so these last couple of hotter weeks have been great... nice to be back in shorts and bare feet!

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 xx 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!