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.
I havent posted hear in a while so I should update everyone on whats been going on! I was extremely frustrated because I was (and still am) having extreme joint pain and have been through the ringer of tests and nothing has shown to reason for my unprovoked PE. My PCP does not want to believe me that the joint pain is actually due to the Xarelto and not some sort of arthritis and has sent me for MORE tests! I have a follow up with her at the end of April to go over everything she ordered.. I am also very frustated because I am currently seeing a bunch of doctors and no one seems to be communicating with one another. I go for one test and the other doc wants me to go for the same test but they BOTH send me for it! Very frustrating.. I went and saw a vascular surgeon which was a waste of my time to say the least.. She said they cant do anything for me unless I need surgery and sent me on my way.. She was asking lots of questions and I was telling her I still had pain in my back (original PE symptom I had) and she said dont worry it is just pain from all the damage the clots did.. The next day I get an urgent call from my hematologist saying they need to see me ASAP and i need a same day appointment so they can see me. I go in and I guess the vascular surgeon told him about my pain and he wanted to do another CTA to make sure I wasnt clotting still. What I dont understand is why would you tell me not to worry but send a note to my hematolagist saying that its an emergency? Ugh!!! I saw my hematologist that day and we talked about the risks of the CT with the radation because I had multiple Xrays done before I was diagnosed and I had my CT to confirm the clots about 2 months ago so lets hold off on the CT.. We aggreed on holding off and I will call him daily to update him on how im feeling. The next day I get a call from his office saying I NEED to do the CT and that they already preaproved it with my insurance and to set up the appt to get it done. I got it done despite asking questions and good news it showed no new clots (as I thought) and i followed up with him yesterday. Last weekend I developed a horrible headache, one ive never felt before so I called my hematologist to see if he was concernes it could be clot related and he told me go to urgent care and get checked out. I do that and of course they cant do anything for me because I cant take many pain killers because of the blood thinners and I refused a narcotic pain killer. I followed up with my hematologist yesterday and he said he wants me on xarelto for long term to life because we dont know why the clots formed and ended up in my lungs so it would be better to be safe thana srry and he was going to talk to a pediatric hematologist to se if he missed anything. He also set me up with a headache doctor to make sure my brain wasnt bleeding. Headache doctor started me on steroids for the current migraine I have and I am being sent for an MRI of my brain along with some ''bubble test'' to see if I have a hole in my heart and he wants me to get trigger point injections to alliviate the chronic headaches. I have set all of those up and was going to be seeing my hematologist in 3 weeks to go over the new blood work he just sent me for. As I was coming home from the dentist today I get a call from the vascular surgeons office saying that they talked to my hematologist and they aggreed I need to get another CT but of my abdomen and pelvis.. WHAT?!?!? I am refusing to put myself through more radiation seeing I JUST had a CT last week! WHy didnt you just do it all at one time?! I am awaiting his call to ask him why this test.. you just did ultrasounds of the same area and it showed everything is normal so what the hell? I am still extremely frustrated along with being drained both physcally and emotionally.. I have accepted the fact that I will probably be a lifer on xarelto and thats okay.. however lets stop ordering tests that are unnecessary or you could have done all at one time! I am trying my hardest to stay strong but I dont know how much more I honestly can take!
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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.
If you call your doc with back pain, chest pain, etc, they’re usually going to tell you to go to the ER. It’s a liability thing and they just don’t want to risk it given your history.
I got a new pcp about 9 months after my PE. It made a big difference. I think for me the change in doctor’s just psychologically gave me a boost which made me actually feel physically better.
The biggest problem for me is trust, trusting the doctors. Are they right? Are they going to make a mistake? Is this pain an ordinary post pe pain or am I in trouble again. That's how my mind was, But it was my inability to trust.If you can trust the doctors then you can relax more .But easier said than done.I can trust now because all the pains and aches have gone away.
I noticed stages, The first was love of the health professionals and gratitude, upon discharge because of the lack of information and the pains and aches in the first 10 weeks to three months this turned to fear ,lack of trust and anger.Now that I am in a better place pain free its calm and serenity.I think there should be a post discharge debriefing on what to do and not to do and what to expect in the couple of months afterwards, Remember you are in the best of care try and focus on the positive.
Recovery is a long process and it takes time for our bodies to recover. I freaked out over every pain post-PE & wound up in ER twice. I had 2 CT scans within a month...all because I didn't trust that the med (Xarelto) was working. But, it does work and, according to their literature, 98% report no new clots. After almost 3 months, I trust the drug is preventing new clots from forming.
As for side effects...I had headaches, flank pain, fatigue & dizzy spells and I think it was primarily because I wasn't drinking enough water. Once I hydrated--at least 68 ounces per day--most of my symptoms went away. I still get tired & flank pain, but not as frequently as I once did. Moving helps, too. What keeps me feeling "like myself" again is walking, drinking water, eating healthy and avoiding stress. That's what worked for me after a long period of stressing out & a big part of that stress was obsessively reading everything online about PEs. I've stopped that & feel better. Now I'm back to living my life. Takes time, but you'll get there. Just focus on doing whatever you can do to take care of yourself. Hugs.