DVT Diary from Vancouver, BC

Eh Brenda, that is indeed good news.
Sounds like a round of good news, looks like I'm stabilising again, INR is 2.4 today, on my way to monthly bloodwork(like I was). I have a Doppler on sept 15, just to see what is shaking in my leg.
Talking with my med study co-ordinator who has had a talk with my Hematologist and the news is that I may be another year on anticoags as oppose to the LIFFER status as it was predicted.
But that is in a next year...

How is the International workout group doing?

dero wrote:

How is the International workout group doing?

Erm, hello - my name is Gismo and I have a confession...

I did not do my workouts the last two days! Bad, bad, bad girl!!

I hereby solemnly swear, however, to do them today (and catch up on the two that I am behind!) I feel so good when I do them that I'm rather ashamed of myself today ... okay there! I've reported to my “conscience” there in Vancouver yesterday too hehehe

PS: Just have to share this - I heard from someone that many, many years ago, they used to refer to them as “physical jerks” LOL!!!

Ok... INR has been at 1.8 for 2 wks., so my dose was upped to 7.0. Next INR is in a couple of days so we'll see what happens!

Last week's INR was 2.6, so all good. I know now, when I'm where I should be also, because I am like "a ripe tomato" as per my GP!....I bruise easily!! Anyhoo, we'll see how I do on Tues.!

Well, I've had 3 "in-range" INRs all in a row! So far so good!!

I leave on Fri. (Sept.26) for Boston to the DVT Summit. (Will keep you posted on that.) My first big plane ride since DVT! I'll be wearing compression stockings on my DVT leg AND my good leg, drinking lots of water, stretching and walking (I reserved aisle seats for all the planes--have connector flights).

When I get back, I'll have another INR done and if it's still good then I will be able to reduce them from once a week, to twice a month..... YAY!

Brenda,

Hope you have a great weekend in Boston, say HI to Tom for me please.

Be WELL!!!

Looking at what you are going to do, I have NOTHING to add, drink, drink walk and stretch...

SO????
How was Boston???

Heyyyy!

Sorry folks, I'm a little slow to get back here!

Re: The NATF (North American Thrombosis Forum) http://www.natfonline.org/ Thrombosis Summit, Sept. 27/08

Boston was great! (Minus the tail end of the hurricane!!) Met some great people on the Patient Advocacy Committee who will be terrific support while I start my own live support group locally, and a great patient/public network. Plus, of course they have some exciting various initiatives they are discussing. Also, will get some info from one of the members re: possible speaking engagements.

The conference itself was good (the parts I could understand--a lot was way out of my realm of comprehension, re: medical jargon, etc.) In addition, there was a new Patient Spokesperson from the Coalition to Prevent DVT, Bonnie Berstein, an ESPN broadcaster, who spoke about "Pulmonary Embolism: A Patient's Perspective". And the Assistant to the Surgeon General was there to represent, re: the Call to Action.

I have the entire copy of the day, slides, etc. in the massive 289 page syllabus (workbook size)/book that I took home. Also, they included it, in its entirety, on disc as well. Not sure how big the file(s) are, but can send to anyone.... don't hesitate to ask.

Also rec'd a copy of NATF's "Work Plan--Summer 2008-Spring 2011" (hard copy), information from the Venous Disese Coalition (www.venousdiseasecoalition.org/), a Focus on Blood Clots pamphlet (avail. online at: http://vdf.org/pdfs/VDF_FocusOnBloodClots.pdf/), and from the Vascular Disease Foundation, a hard copy of their "Keeping in Circulation" newsletter (available online at: http://www.vdf.org/resources/newsletters.php).'

That's about it...

Next, I need to meet with the Self-Help Resource Assoc. of BC re: startup of a local support/education/awareness group, then, once I'm ready, contact Tom with NATT to obtain their great educational materials, and others.

Have a super day!

Brenda,

Sorry I was unable to attend. We had to send our Medical Education Director, Mary Ellen, as a stand-in for me due to my reoccuring hip problems. Finally had to set up my surgery appointment for hip replacement; much to my dismay. Goodl part is, it will be after biking season.....

Hope you had a chance to talk to Mike Hefron who shares dual hats with NATF and NATT?

Regards,
Tom

No worries Tom. Glad to hear that your surgery is scheduled for after biking season. How long will it take to heal from it?

News update:
NATF hooked me with up with a doctor in Vancouver who has joined up with them. (I am now on the NATF Patient Advocacy Committee.) Turns out that Vancouver General Hospital is building a brand new thrombosis program (awesome!) and she is the Director of Thrombosis for it. She is very keen on public awareness and patient education. Yay! I will be meeting with her and an anticoagulant nurse this week, to see how we can do some teamwork. Maybe I can correlate my support meetings with what they are doing. Will keep you all posted!

My story...update:

I've been doing pretty super...
* been on 7mg. since Aug. 21, which equates stabilization! Yahoo!
* made my long-distance flights at the end of Sept... all seemed okay.
* have not felt like my blood pressure is as low... no more fainting other than one time Sept. 7. Apparently, my blood pressure is at the lowest end of normal. (Hope I'm not repeating myself and haven't said this before! Anyhoo....)

Then, a few small glitches in the road lately:

* after the long flights back (Sept. 27), I started getting a bit sore in my DVT leg... understandable. So, had my sox on all the time.

* Oct. 1st had chest pain, in middle of my chest, then it moved over to the right side of my chest. It hurt to breathe in deeply, but not bad. I lied down and it went away after an hour and 1/2. I know the drill, to go to emerg., but it wasn't incapacitating, and I could breathe fine other than the little pain (like a stitch). I seem to remember having it once years ago, and think maybe it was only an air bubble in there or something. Anyhoo, when I reported it to my GP, he was not concerned.

* Coincidentally, at the same time, before my flight my GP said I could reduce my INRs to every 2 weeks. So I had one before I left (2.2), then did not get another done until Oct. 14. No calls, no results... so figured everything was good. Then got a call Oct. 20 from my GP's office informing me I needed to see him. So, rather than just telling me over the phone, they had me drive all the way to my GP's on Oct. 22 (over an hour away--where I used to live) to tell me in person to retest because my INR dropped to 1.6 after being stable for so long. He asked why I'd missed a dose. I said I couldn't have, because I have my pills in a weekly container, with the days of the week on it. I'd know if I missed one. Anyway, he didn't adjust my dose because he felt it might be an influction, since I was so stabilized finally in the last couple of months. Well, that was Wed., today's Sat. and I've heard nothing. Will have to call on Mon. I can only assume that it's okay. The strange thing, is that yesterday I had some symptoms of OVER dosing, not under dosing... i.e. petechia(?)--a patch of teeny red/purple dots on my DVT leg (top of leg--my DVT is lower leg.... I have had a few before on the bottom leg), and some bruising again. Would seem that my INR should be high, not low. I'm confused! Anyhoo, I will get it sorted out! But it all seems coincidental, after the flights, the soreness, the chest pain, and low INR. Hmmmm.... The time between INR testing, and telling me the results is driving me a bit batty. So there's my beef for the day!

In other news:
My in-person DVT Support Group is up on meetup.com. So I'm anxiously awaiting for some local members to join up!
http://www.meetup.com/DVT-Group-of-the-Lower-Mainland/

Hope all is well with you all! Take care,
me!

Hi all,

YES, you may note believe your eyes, but I AM back! Was working on contracts from Oct. 08 - Mar. 09 that consisted of very long days, then was away traveling for March and beg. of April, THEN my Dad passed away at the end of April, THEN I've been playing catch up! Anyhoo, apologies for my absence. Life kind of gets crazy sometimes! Not an excuse... it just it what it is.

Kudos to Denis and all his work and ongoing efforts on this site and working on getting our voice to be heard at a national level of organization. It will all come together!

I will have to scour through the site and get caught up on what I've been missing around here! Off to do that next!

In the meantime, if you know of anyone who lives in the Lower Mainland or Fraser Valley area of BC, who has VTE (DVT &/or PE) or would like information or to support, my DVT Support Group finally has enough members to meet. So our first official one will be July 22, 6:30-8:30pm. For all the info, please see: http://www.meetup.com/DVT-Support-Group-of-the-Lower-Mainland/

In NATF (North American Thrombosis Forum) news:
* a member of the advocacy committee has been working hard on creating a virtual NATF city in the virtual world of "Second Life". I will keep you posted when I have the link and all the details.
* NATF is now on Facebook... just getting started.
* The next NATF Summit is in Sept., so I expect to be attending.

As for my DVT/PE health:
* Still on Warfarin. Stabilized for quite a few months at 7.5 mg. (Although, once I had a bizarre INR reading, out of nowhere, of 5!!! But it all settled down in no time. Not sure how I managed to get it up there so high!?) Waiting for my Dr. to decide it's time to stop. Then once it's out of my system, I'm going for hereditary testing to ensure it's not in my genes, since my Dad had both arterial and venous clots, and was on Warfarin for 40+ years.
* Been having some pains in my left hip/pelvic area for a couple months. Feels like a muscle pull. Of course, my first thought was oh, oh... could it be DVT in my iliac vein? But probably not, the Dr. dismissed the notion... since I'm on Warfarin. But you and I know it IS a possibility. However, it's been so long now, I doubt it, or I'd be in serious trouble! So now we've been investigating it by exploring other things... ongoing, not really getting anywhere.

Anyhoo, that's some of my news.
Miss you all and glad to be back. Will try not to be a stranger!

Hi everyone!

Just started a DVT Support Group on Twitter. This is great for those who use Twitter to share info with other DVTers and to inform the general public. Follow on: www.twitter.com/DVTSupportGroup