My journal update!

Well, ever since my bad wkd. 2 weeks ago (with that new DVT feeling pain in calf all over again), I developed a varicose vein. Really ropey and enlarged at my ankle, and not ropey yet but getting bumpier each day up my calf. Talked to Madeline and she has these too. I'm thinking my valve somewhere must indeed have been damaged, as they say happens. Or PTS already?@#$@? There seems to be lots of pressure happening. SOOOO, my GP is sending me to the hospital next Wed. for another Doppler. (This makes #3 since June 20). So that's good news... I won't look a gift horse in the mouth! (Sorry for those of you in other countries--that must sound like a weird expression!!)

My INR last week was 2.9, and this week is 2.4. All seems to be stabilizing out a bit. YAHOO!!

Ok must going... leaving in the a.m. for an early wkd. getaway. Back in a few days!

P.S.

In my newsletter this month I wrote all about DVT; my story, facts, resource links, etc. I know that my story is a light one in comparison to what many of you have endured, but I felt this was important to send to friends, family, colleagues, and joe public to educate, help people understand and save lives!!

If you go to my homepage at www.brendablackburn.com , go to my August newsletter ("What the heck is DVT?") and click it. Be warned... it is lengthy, but important!! Feel free to send to anyone and everyone you know who you feel would benefit. (i.e. those who may not understand this whole thing.)

Note: for the links (many of you will already have many of them), the link may look like the general homepage.. it is NOT in most cases. We ran out of room for characters in the newsletter, so my web guru had to hard code the long link with extension. In other words, don't worry, the right location is there when you click it. You'll see what I mean when you try it.

Re: the podcast. For the signs and symptoms I put it on my podcast this month. You must subscribe to get access, or email me directly at brenda@brendablackburn.com. Again, everyone here will know this stuff, but others you know may not, so if you like I'll send you the mp3 and you can send it to anyone.

Thanks everyone!

I'm back from the wkd.! Had a fab time, but did lots of walking. Even so I did great, with my sock. Although, I didn't have it on today, so my ankle and foot was hurtin'. (Seems like I have even more post-DVT activity happening down there lately!)

Going for INR tomorrow... I'm trusting it will have stayed right where we want it to be. And Wed. will be at the hospital for Doppler #3... don't expect those results until I visit my doctor near the end of next week.

Journal update:

Had 3rd Doppler today. Good news!! Whatever I have been doing is working! Clot and some blockage still there, although, as per the tech., there is a bit of a clear spot in my one of my veins in between the mess. Woohoo! Things have been improving! That's what I like to hear! Wine was in order tonight! A little celebration! hehe

Just got my Monday's INR results today... it was down to 1.8 from 2.4 last week, although they want me to resume my same dosage another week. Will retest on Mon. and will take it from there.

Whoohoooooooo GOOD NEWS Brenda!!! And we so looooove good news!



Hopefully the INR will follow suit and "behave" next Monday. Probably a little lower due to the weekend away, as we always eat and drink differently on these occasions. At least its not way off so yay, its a good day!

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?

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!