Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Was diagnosed with endometrial cancer, which could have been/should have been all gone by now . All I needed was a full hysterectomy and it would be gone.
BUT the malignancy caused clots in my legs and then multiple embolisms in my lungs so I can't have the surgery until the clots are gone.
A couple of questions:
swelling in my clotted leg: heat or ice?
I'm giving myself heparin shots (ugh) and despite being really careful --- slowly plunging the plunger thingy, keeping it at a 90 degree angle and leaving the supposed plunged syringe in for a count of 10, I almost always have some left in the syringe when I push the plunger one more time to release the needle cover. I aim it at the sink but let me tell you, I feel SICK when medicine goes down the drain instead of IN ME! Does anyone have any hints on how I can make sure everything in the syringe gets in me?
I will also say it's not easy to inject in my "love handles" because as a female, you need three hands. One to pinch the skin, one to inject the syringe and a third hand is needed to get the old boob out of the way so you can see what you're doing. I've found it's a little easier if I sit down, and then the skin kind of folds on its own. But ladies, if you have any ideas, let me know. My husband said he'd try to do it, but heck, I hardly trust myself. I want to get this down to a science first and then teach him how to do the injections best.
This is not the way I thought I'd be spending my summer, but hey I dodged some major bullets so far!
BUT the malignancy caused clots in my legs and then multiple embolisms in my lungs so I can't have the surgery until the clots are gone.
A couple of questions:
swelling in my clotted leg: heat or ice?
I'm giving myself heparin shots (ugh) and despite being really careful --- slowly plunging the plunger thingy, keeping it at a 90 degree angle and leaving the supposed plunged syringe in for a count of 10, I almost always have some left in the syringe when I push the plunger one more time to release the needle cover. I aim it at the sink but let me tell you, I feel SICK when medicine goes down the drain instead of IN ME! Does anyone have any hints on how I can make sure everything in the syringe gets in me?
I will also say it's not easy to inject in my "love handles" because as a female, you need three hands. One to pinch the skin, one to inject the syringe and a third hand is needed to get the old boob out of the way so you can see what you're doing. I've found it's a little easier if I sit down, and then the skin kind of folds on its own. But ladies, if you have any ideas, let me know. My husband said he'd try to do it, but heck, I hardly trust myself. I want to get this down to a science first and then teach him how to do the injections best.
This is not the way I thought I'd be spending my summer, but hey I dodged some major bullets so far!
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
What works for me with the shots is I push the plunger in all the way as far as it goes with one push. When those syringes are pre filled, I believe they account for the little bit of medication left in the syringe that doesn't get in your body. I would leave it in the syringe rather than putting it down the sink. You can buy one of those plastic hazardous containers at the drug store where you fill it with your syringes and once filled, it can be mailed to a company that will dispose them. I would dispose of mine at work, in the hazardous bin mounted in or bathroom.
Also, try injecting in your front belly rather than on the side. I inject closer to my belly button area than the sides. That way you see better. I literally stand in front of the mirror when I inject so I can see what I'm doing. I alternate sides when I inject, left side of my belly botton, right side of my belly button. All I do is pinch maybe an inch of skin.
Once you get used to it, it's a very quick, easy thing to do.
As far as your leg, I never used ice or heat. I just elevated it. Some people find heat helps, and some find ice helps. Might want to check with your doc. If your doc said it was ok to walk, try to do that often, even briefly.
Good luck with everything!
It's also possible to inject on the thighs. I haven't done that myself, but it is the common location for pregnant women and it might be easier for you if you've got an inch to pinch there.
For me, I was always much happier with heat on the clotted leg. I couldn't handle it at all on my chest with the PEs, but it felt good on my leg, for sure. You can always ask your doctor too whether he/she recommends heat or ice. For me, the rule of thumb is if it feels good, just run with it.
I love your attitude! You seem to have some good energy, despite all the hard balls that have been lobbed at you so far. Hang in there!
Do you all consult with a pulmonologist, a hematologist or a cardiologist with your PEs?
I did have an echo and a short consult with the cardiologists who were surprised when they met me in person. They said I didn't look like they thought I would based on my scans -- but that was a GOOD thing. They said my PEs must have driven right past the danger zone and parked themselves in capillaries far away from scariness. And they usually don't travel backwards. Yay.
Still, I never thought that cancer would be the least of my worries. Fortunately endometrial cancer moves very, very slowly so we have some time to clear the clots. And I'm almost 64 so I certainly don't need those parts any more!
I will note that I have consulted with a hema, pulmnologist, and cardiologist. The hematologist because I've clotted three times with no actual cause. The pulmonologist and cardiologist because I was having issues with very low BP a few months after my PEs. All of them, I only saw a few times and never again once we'd done what we could.
You could check with the pharmacist on the thigh injections as well ... they could tell you about that and you wouldn't have to wait for a doctor's appt.
I think getting too many docs involved just ends up making thinkgs more overewhelming and exhausting after a while, and really doesn't solve for much, unless you develop specific problems.
Thank you, and all of you for your input. I'm sure I will have more to say and more to ask
I would say compression for the leg rather than heat or ice, if it's OK with your doc. I think ice would be counterproductive. Elevating your leg and flexing and pointing your toes will help squeeze the fluid through.
If you are keeping the syringe in place for the 10 count you are already getting the full dose. I get sharps containers for free from my pharmacy (shoppers drug mart) and just swap the full one for an empty one.
I am seeing all three of respirologist, cardiologist and hematologist but only because of other lung issues, possible ph and chronic clotting. A straight up pe would normally be handed off to the gp after the initial emergency treatment.
I share your amusement at cancer being the least of your worries, with all my scans they've now found three different things that they'd remove if I could breathe better, one of which they say is most likely cancer. But I don't even think about it with everything else going on.