Hi, I just came home after a massive PE in both lungs. The Interventional Radiologist insert an IVC filter to prevent any more clots from moving up to my lungs. I understand that they are also used when surgery is required. They usually removed with 6-12 weeks. My clots came from my legs.

Tough decisions. Good luck..

Thanks for the info

Right, ask your doctor about whether a temporary or permanent filter is appropriate for you. Also, usually after surgery, they start you back on the shots the same day or soon after, depending on the bleeding risk. They should also have you in these compressions sleeves on your legs right after surgery that automatically pump compression.

Discuss your concerns specifically with the surgeon and ask him/her exactly what the plan is for preventing clots. Knowing that may help you.

I have the stockings all the time... And I will be stopping wafarin 1 week before surgery and doing the injections until the day before and then back on the injections straight after. I am well educated on the medical and risk side of things.

More emotional side I'm looking for some comfort (for lack of a better word atm) and maybe a strategy on how I maybe able to develop a coping plan with this as I'm am scared to timbucktoo

Sorry, I wasn't presuming you weren't educated on the medical side of things, just sharing that it helped me emotionally prepare for the surgery knowing in advance how the surgeon was going to address my clotting risk. I've had one surgery since my PE, and I was really scared about getting PEs from the surgery. So my surgeon tried to re-assure me by telling me all they were going to do to prevent clots, which included the compression "boots" right after the surgery while in bed, and staying over night for observation (it was a surgery where I could have left the same day but due to my clotting history, the surgeon recommended I stay overnight for observation). That helped put my mind at ease.

So, my coping strategy was making sure my surgeon had all the bases covered and informed me what she was doing for me. Outside of that, some of it is just nerves and anxiety you kind of ride out until it's over. I think trying to weigh the risk of not having the surgery helps too. If you don't have the surgery, then what's the alternative? Is the alternative being sick, having cancer growing in your body? If the answer is yes, then does that outweigh the risk of getting another clot despite the precautions, ie stockings, injects right after the surgery, being monitored, etc. Try to stay objective, try to look at things logically. It's hard to do because it is so scary. But that helped me stay focused.

Sorry I didn't mean to sound rude Hun I feel bad if that's how it came across I appreciate all advice

I have been very inside and outside the box of the situation lol but it's rapidly approaching and I think I'm just being a bit sooky lol

I have an amazing head of Gynea oncologist surgeons and head of anaesthesia aswell it's basically left all in the hands of fate really and its even harder cause I'm such a control freak and I can't control this but just prepare for every possible outcome. My b'day is 8 days before so atleast I get to turn 34 lol

Oh don't feel bad. I just didn't want you to think I was insulting your intelligence, ha ha!

Part of preparing for any and all outcomes is being in control, right? But yeah, so much involves putting trust into your doctor's hands and just telling yourself that the odds are in your favor to not clot. I mean, it comes down to having that internal dialogue, over and over again.

I think too, for me any way, once I actually got to the hospital to have the surgery, I was totally in a "Let's Do This Thing" frame of mind. I was on board and ready to get it over with. To be quite honest, by that point, the thing that scared me the most wasn't the risk of clots, but being like that less than 1% of people who die from anesthesia. Your mind really creates a lot of nonsense when you're worried and scared.

Take care of yourself right now. Try to keep yourself busy, hang out with people so you have a break from your own thoughts. It's important to stay engaged and out of your head when you find yourself having intrusive thoughts about all the what ifs. You'll be ok. It's just as easy to think that, then think you won't be ok. So that's where your control comes into play as well. Control how you choose to think about it.

Hang in there!

Hi,

I meant to ask if you were on blood thinners when your second PE happened?

PJ

The clotting and the not waking up are definitely the things scaring the most..... Thanks for all ur advice Hun xoxoxox

I am now on Warfarin for life I was diagnosed with my first in 2012 and my second this year 1st aug and I'm on Warfarin. I only take 1.5mg a day I have really thin blood to start off with so that's why doctods are are worried about if it's my heart or lungs making them.