Wow, what a diference a drug makes. I definitally know I'm taking dabi as oppose to warf, all the side effects I have learn to hate are TOTALLY gone. I wake up in the morning rejuvenated, like the sleep I get counts, not in a fog like I was CONSTANTLY, some days it was like pea soup,I hated driving in that state, Seems my body temperature is way higher then it was, not feverish but where it's suppose to be(specially makes a dif. during this Canadian winter).
On the physical side, the swelling is almost gone and like I mentioned on previous posts, it stays down...
Overall, I'm almost back to what I use to be, just have to work on tonning and bulking a bit.
Emmotionly, I will miss MTB, it's not that bad now(it's still winter)but come springtime...
We'll have to wait and see.
Taking life day by day.

Dero,

What is Dabi, pardon my ignorance?

Glad you are feeling so much better. I remember being freezing cold the entire time I was on Coumadin, so I relate to what you've experienced coming off it. I am sensitive to cold anyhow (and Victoria is not tropical despite what people try to say about it), therefore the time on Coumadin was truly torture for me.

What the scoop on risks with taking Dabi (whatever that is)?

Did you ever get a copy of the magazine article that you were interviewed for? I'm sure you would have posted a link to it if it was available by now.

Glad to see this forum is slowly building, as is my May-Thurner Syndrom forum...it takes a lot of time and patience, but the rewards of providing such a supportive place for people to meet and chat far outweigh the effort and patience required.

-Diane

Eh Diane,
How have you been lately? Yes more people are joining the forum and yes I understand exactly what you mean when you say "it takes a lot of time and patience, but the rewards of providing such a supportive place for people to meet and chat far outweigh the effort and patience required." Plus I would had loved to know of somewhere like this to go when I was originally diagnosed.

As for dabi, (* see http://en.wikipedia.org/wiki/Dabigatran*)
it`s real name is dabigatran etexilate which is another anticoagulant that is on it`s third phase(as a new drug before being accepted by the FDA).
-not a vitamine K atongonist.
- no monitoring need
-takes 12 hours to get in your system and 12 hours to get out of your system (renal way)
- for long term users, it is not as hard on your liver compare to warfarin.
-some people are stilll leary(doctors and out patients) because warfarin as it is, has been around since 1952(if I recall correctly) and dabi has been under study for 10 around years.(the three mandotary study phases)
so yes the long term effects, are not all known...

But what I like is that 2 weeks after I started on this study I re-discovered "life" or as close to what I knew it as, well without the biking, it`s still an anticoagulant.

To let everybody know how things are...
Had bloodwork last thursday and it was 2.0 (doing my happy dance)
Blood pressure and heart are good, Angele the study coordinator tells me that I have a heart of a 35 year old man, if only I would have the leg of a 35 year old man to go with that. (sigh...)
Anyways, spring is here and the period I have been dreading is here, I have been busy with work so no time to miss MTB, 'cus this would be the time I would start hitting the trails...
We'll see.
SO, physically and mentally things are good!!!
See if Ican keep it that way...

*Have some meetings coming up, with some important people regarding the Canadian DVT association, I'll let you know if and when anything developpes...
Be well.

Well another good INR, 2.1 today, I keep doing my happy dance,seems that 10/10/9/10/10/9/10 is the dosage that Boehringer(drug company that is doing this study) likes to see, even though I'm doing warfarin placebo(sugar pill).
Work has been extremely busy lately, so I have not been able to further my quest in starting this Canadian DVT public awareness campaign.
As soon as something does happen, you will be the first to know of the details...

Be well.

Ok, so here I am at the TAT Unit for a 9 month check up,kind of appt that should last 15, 20 minutes talking with my doctor(hemaetologist) but in the last few days, I have been having these chest pains and shortness of breath(yes the PE alarms are ringing in my head),so I mentioned it to Dr. Martha ,stetoscope to lungs breath in ,out... She tells my Dr.(Dr Forgie) and in comes Dr. Forgie with a puzzled look on her face, querries me and tells me that I'm on my way to the lab for a CT-scan and d-dimer test... First time I had a CT-scan,that leaves a bad taste in your mouth, (yuk!!!) and that is so weird that warm feeling that travels through your body and the speed, anyways the tests came back, d-dimer NEGATIVE and ST-scan NEGATIVE what a relief!!!!
YAY!!!!! Leaving the TAT Unit 4 hrs later with PE out of my mind, need to setup an appt with my GP for a physical, need to find out what this pain is,must have known... a month before I stop working for the summer.
Aside from this day at the TAT Unit, the leg is stable, it only swells when I work long days, standing on it. Wearing the fugly (compression sock) really helps enormously.
Last week's INR was 2.1
So overall, all is good.
I'm alive and I can walk, that's what counts.

As if...
DVT itself is not enough to worry about on a daily base, sunday morning, as I entered in my bath tub I took a spill and slammed my DVT leg on the edge of the tub. It felt like I had just gotten hit with a 2X4 just bellow my right knee, the bump from it was like I had two knees on that leg...

So like a good boy, off to the ER I go to get it checked out, after bloodwork(2.3 INR), xrays(no broken nor chipped bones) and what else? 7 hrs later I left the hospital with a bottle of pain killers(well a script for it) and a pat on the back for being a good DVT patient and a clean bill of health, oh and a THROBBING leg and a bruise that is getting bigger as the day goes by...

PLus a week off from work, YAY!!!!! (note from the ER Doc)

Oops, maybe I should not be so happy ...

What's next???

PS because of the swelling and pain, I cannot wear the FUGLY, see what the study co-ordinator says.



I'll be ok, I think...

As if, part deux...

Thursday, June 19, 2008

It continues...

So after getting that bump below my knee on sunday (see my previous journal entry)

I had an INR appt. today and I told the study coordinator (Nurse Practionner) that I would like to get my leg looked at, appt set (9am this morning) and as soon as I walked in her office, her jaw dropped, my leg (below the knee) is the same size it was when I was originally diagnosed last aug, so she was concerned...She sets an appt with my Hemeatologist and as soon as she walks in the room, I see concern on her face.

INR is 2.3 and I had a Doppler done, everything was negative, but the sweling is cause mainly from a blood accumulation (hematoma )because I am on anticoags it is more prominent and if kept on anticoags, it would take forever for it to heel.
SO...
I get a week off of anticoagulants and have another appt next thursday for another assessement of the situation.

What this all means is that if I'm on Dabigatran, it will take 12 hrs for it to be out of my system or if I'm on warfarin it will take 7 days.

Yes I say "if" I personally I think that I'm on dabigatran, but others think that I'm of warfarin...

So...

I have another appt. next thursday, we'll see.

So, my leg is sweeling everyday and really aches(throbbing pain) been off of the anticoags since last thursday.
Weird sensation(mentally) while you are on anticoags, you wish you did not have to be, while you are off of them, you know that you are at risk for cloting, maybe I'm just a tad paranoid, but it's still there... (some catch 22 eh?)
But, I have a good medical team and I know that
THEY KNOW WHAT THEY ARE DOING!!!
But that does not take away this paranoia.

Ok, so I had my follow up today, expecting to see my doc and that she would say " that leg looks good and back on the anticoags you go" well it did NOT happen entierly that way, she did say that the swelling had gone down BUT, that I had developped a skin infection on my lower leg(knee to ankle) ( I thought it was the bruising colors, because along with the red there is yellow and purple, like I said it felt and looked like somebody had hit me across the leg with a 2X4 or a baseball bat ) and that she will put me on antibiotics for a week and that I am to see her in teo weeks. She will keep me off of anticoags until then.(antibiotics and anticoags do not mix).
She also told me that Imay not have to go back on anticoags, if I do I will have to start the whole process from scratche, meaning Framin self injections(Low Molecular Weight Heparin) and warfarin until I reach a therapeutic level (between 2.0 and 3.0) and from there go back on the Dabigatran Study...
to be determined in two weeks.

What else can happen???

Ok, so I had my follow up today, expecting to see my doc and that she would say " that leg looks good and back on the anticoags you go" well it did NOT happen entierly that way, she did say that the swelling had gone down BUT, that I had developped a skin infection on my lower leg(knee to ankle) ( I thought it was the bruising colors, because along with the red there is yellow and purple, like I said it felt and looked like somebody had hit me across the leg with a 2X4 or a baseball bat ) and that she will put me on antibiotics for a week and that I am to see her in two weeks. She will keep me off of anticoags until then.(antibiotics and anticoags do not mix).
She also told me that I may not go back on anticoags, if I do I will have to start the whole process from scratche, meaning Framin self injections(Low Molecular Weight Heparin) and warfarin until I reach a therapeutic level (between 2.0 and 3.0) and from there go back on the Dabigatran Study...

...to be determined in two weeks.

What else can happen???

Oh my God... what a mess you are having to deal with. I so feel for you. Now a skin infection? I can totally understand how you'd think the color was from bruising. I can't believe all this is still happening after so long D. I can't believe you have a possibility of having to start your anticoags all over again, with the self-injections to boot. Uh man. You are a brave soul. I am very lucky that we have a DVT program at our hospital (but they are potentially going to close it), and had the injections given to me. Hang in there and try to stay positive. I'll send some good vibes your way and work on visualizing your leg healed.

I have been following your story Dero, and I must just tell you that you are an inspiration to me. Stay as strong and brave as you have been through your whole ordeal thus far. You are in my thoughts.

Ok, this is it, the two weeks are up...
Swelling of the hematoma is down, the redish color from the skin infection is somewhat gone and tomorrow I go in to see my hematologis to discuss about going back on or staying off of anticoags.

I'm sitting on the fence about this one, to be honest...
Sure, off of a-coags means I could go back to riding, but it also means I'm at risk for another clot...


( Male Idiopathic DVT patient have an 18% chance of reccurence after going OFF of a-coags, be it 6 months, 12 months or 2 years.)
Let you know what the outcome of this appt is...

Hi Denis,

Glad your infection is getting better.

Re: coming off co-ags...isn't there a weak/low dose version called Plavix(?) or something like that, that people can do long term? Or is that instead of Warfarin in the short term only? My Dr. briefly mentioned something about it... will have to ask. But hopefully the hematologist feels it will be ok. (18% chance means an 82% chance of all being well!! Just trying to do the seeing the glass 1/2 full thing.) What is the stats for female? I bet it's in this site somewhere and I've seen it!! Is it?

Silly question #999: So should everyone see a hematologist at the end of their treatment or only in some cases??

Looking forward to hearing what happens. Good luck and I hope they really give you lots of info so you can make the best decision that feels right for you.

My next Dr. appt. is Fri.... then I get the review of my latest Doppler I think... provided he has it back from the hospital by then!