Today is my anniversary!

[mainframe]

Nov 11, 2009, I had my second AVR at Stanford my Dr. Craig Miller. I had a pretty rough time of it. About 5 weeks in the ICU and over 2 months in the hospital. There was a pretty long thread about my stay: http://www.valvereplacement.org/forums/forum/post-surgery/34385-mainframe-needs-all-your-prayers

Since, then, I've had 3 additional surgeries for an infection of the sternum. Fortunately the third surgery did the trick. And an uneventful two or three years since.

Now, I've found out a month ago that I have a brain bleed. (subdural hematoma). I don't know if the Coumadin as I did get quite a bit out of range 3 months ago but I haven't hit my head on anything. In any event I spent the most boring 12 days in the hospital last month. I felt just fine the whole time other than minor headaches since the beginning of September. It took a few weeks to figure it out after visits to the internist, neurologist and even dentist. It was the second CT scan the neurologist ordered the bleed became quite visible. Since I'm on Coumadin, my neurosurgeon wants to just watch it to see I if get better (I am). They don't want to operate if they can help it, apparently I would have to be completely off Coumadin for an entire month should they operate. And they feel that puts me at risk having a mechanical valve and a fib.

Well I hoping to get by this hurdle until the next one.

Chris

 

[Heart Of The Sunrise]

Congrats.. on your anniversary!!. I am 46 months post op...all is well! You have been through a lot. Hang in there!!! I have the On-x valve. My INR rang is 1.8 to 2.2. What is your prescribed range?

 

[VWalk]

Hi Mainframe. Can you define "quite a bit out of range"? Also, do you know what caused you to be out of range?

 

[neil]

sorry your having a rough time mainframe,

 

[mainframe]

My range was 2.5 - 3.5. It was monitored monthly with a blood draw and dosage suggested by an anti-coagulation management group (AMS).. My INR level at some point in July read 5.5.

I've requested a self tester to better keep track than AMS does. I have a class on Tuesday for a new coaguchek.

 

[Warrick]

That's great you are getting a coaguchek and it's very easy, my INR went to 3.2 on friday and with knowing this and managing my dose the right way I had it back to 2.4 last night (range 2-3)

belated congrats on your anniversary too!!

 

[sylviayasgur]

so sorry to hear about this. hope the bleed resolves and you recuperate smoothly.
be well

 

[pellicle]

Gee Mainframe I'm so sorry I missed this ...

...
Now, I've found out a month ago that I have a brain bleed. (subdural hematoma). I don't know if the Coumadin as I did get quite a bit out of range 3 months ago but I haven't hit my head ...They don't want to operate if they can help it, apparently I would have to be completely off Coumadin for an entire month should they operate. And they feel that puts me at risk having a mechanical valve and a fib.

that does sound like a tricky managment issue. I would myself be prepared (were I in your circumstances) to go without AC therapy for the month with just the mechanical valve, but with afib as well the clot risk may be too high.

Has anyone suggested just dialing back the AC therapy to say INR = 1.5 which may still reduce the risks of throbosis from afib but should allow clotting in the brain vessels.

Also, has anyone considered monitroing precursor to clot formation such as d-dimer testing to see if reduced INR can be done (and thus see more clearly if there is risk)? That may assist with quantifying risk more clearly.

Even if there is a short term thrombosis on the aortic valve leaflets that can be dealt with with a PICC delivered treatment of t-PA

Do keep us informed and if you want some boredom relief let me know ... I can "vitual visit" by skype if you feel like a chat

 

[mainframe]

We've lowered my range to 2.0 to 3.0. I'm really trying to keep it as close to 2.0 as I can. I've been telling the AMS group (monitors INR and dosage) what I plan to take dosage wise rather than them reading a chart and telling me. I know how I will react to change in dosage much better then they will. I've been successful the last few weeks of keeping my INR around 2.2, though it fluctuates a tenth or two between weekly blood draws. I have a Coaguchek on the way and should get that this week which should help.

Besides the drawback of having to skip the Coumadin for a month, i'm told one of the downsides of having surgery is that I'll will be more likely to develop a bleed in the future. Both sound bad.

 

[Superman]

Way to take charge! Getting the home monitor will help greatly. Prayers that things resolve rather quickly and life can resume it's normal business.

 

[epstns]

Chris - Sorry my attention here has been reduced (temporarily) of late, and I missed your post. I remember your second AVR well, and I'm glad at least that part of things is behaving. The bleed issue is a tough one, and I'm glad you're taking an active role in managing the situation. I'm doing the same in another medical issue too, and I believe it makes a huge difference in the outcome.

Hope this one works out smoothly and safely for you. We'd be happy to keep you around!

 

[pellicle]

Hi

We've lowered my range to 2.0 to 3.0. I'm really trying to keep it as close to 2.0 as I can

​I think that's reasonable ... do you have any other clot issues in your medical history? (like aside from the afib), also, what valve is it? If not then I reckon you could steer it towards 1.7 gently and get an occasional blood test looking for clot precursors (d-dimer test I think)

. I've been telling the AMS group (monitors INR and dosage) what I plan to take dosage wise rather than them reading a chart and telling me. I know how I will react to change in dosage much better then they will. I've been successful the last few weeks of keeping my INR around 2.2, though it fluctuates a tenth or two between weekly blood draws

that's pretty flat ... flatter than my see saw looks like I can tell ya

I have a Coaguchek on the way and should get that this week which should help.

sounds like you've got your bases covered well ... if you've not used the coagucheck before just be wary of wasting strips with "insufficient blood" errors ...

Besides the drawback of having to skip the Coumadin for a month, i'm told one of the downsides of having surgery is that I'll will be more likely to develop a bleed in the future. Both sound bad.

myself I still would ask why "skip" rather than just drop back ... I mean some level of AC therapy (even if its 1.5) has to be better than nothing.

Just thinking out aloud as if we were yakkin over a coffee about this.

 

[mainframe]

After my first AVR in 2002, I had a issue of DVT. That resolved with a few days in the hospital. Wednesday, INR was 2.1. I think I'm using a dosage that keeps me pretty flat exactly where I want to be until the brain bleed has resolved. The "skip for a month" came from the neurosurgeon. I'm certainly hoping brain surgery isn't in my future. After 1 reconstructive jaw surgery; 2 AVR surgeries; 3 surgeries for my sternal infection that my surgery dance card is full.

 

[dixitworld]

Hi Chris(Mainframe) or better call you a Long Lasting Fighter.

How you will rate Dr. Miller ?

i am also having second surgery this time. AVR was done in 2010 and now 8 years after i am being asked for Aortic root and ascending aorta replacement.
I met Dr. Miller in Stanford and found him much old now.
I am not quite sure if o should go for my second surgery under him.

Other option i have is Kaiser SF surgeons Dr. Pompili and Dr. Vicken.

I have very few days to decide. Not sure what to do being alone in US with no family here , feeling too much worries.