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.
June 13th, 2016 the day my life changed. I woke up with the most horrific chest pain and I couldn't breath. Rushed to the ER and 10min later I am being admitted with a PE the size of my fist in the left lung. How did this happen? What caused the clot in the first place? So many questions and so I spent the next 10 days trying to figure that out. So much blood was taken, so many tests conducted and still no concrete explanation for the clot. I have never taken so many medications in my life. Started with Warfarin but it wasn't working for me and the INR level was like a yo yo. I am now taking Xerelto and so far it's doing alright. The recovery journey has not been easy, in fact, it has been the hardest things I have gone through. Frustration lead to depression because I can't do the things that I used to do. I had a full time Dental Assisting job that I loved, but I couldn't hold instruments because my fingers go numb. Joint pain has taken over my life. I am 39 but I walk and feel like I am 90. I am used to working 40hrs a week and being on my feet all day. Now a trip to the grocery store feels like a full work day. Will I every feel like myself? How do I cope with being depressed? I am on antidepressants but they don't seem to be effective. My husband and I had to move from Florida to West Virginia because he had to get a job that offered medical insurance and a good salary so I could focus on recovering. I honestly didn't believe that it would take this long, boy was I wrong. With all the blood tests, more issues came into light. Hypothyroidism, Polycystic Ovary disorder, and Raynalds Syndrome. I'm trying to stay positive, but most days it takes all I have just to get out of the bed. Thank you to all that share their story, I don't feel so alone now.
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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.
I think too if you have been diagnosed with these other conditions, that could be playing a role although Raynaud's usually isn't serious. Sometimes that tingling and numb feeling can be from medications, other conditions, or even just stress and anxiety. But make sure you are getting treatment for the hypothyroidism and stuff.
The first 3 to 6 months can really be a challenging time in recovery. It can take a while to get your conditioning back to you feel like you have stamina. But truly I think with the emotional and mental part of recovery, people have to really take the bull by the horns and seek help. I went into therapy for a short while about a month after my diagnosis, and it really was helpful to me, to get a handle on my feelings, my fears, and how to cope.
If the meds aren't working, ask for something else. There are tons of meds out there for depression, so there's no reason to stick with one that doesn't work for you. If you've been on it 4-6 weeks (it usually takes that long for them to kick in) and you're not feeling any relief, go talk to your doctor.
Also, yeah, consider doing some talk therapy. It can really help to be able to get your emotions out with a person who doesn't hold any stake in what you're feeling (like a spouse or family member might). If that's not your thing, then try journaling or meditation.
Also, yeah, it can seem like it is one thing after another for a while. I know I had several other diagnoses in the year after my PEs, but many of those have resolved themselves. Also, look at these new diagnoses as POWER. You can't fight what you don't know exists. If you know what it is, you can figure out how to treat it, which means you're on your way back to a normal life.
There's no reason to assume that the PEs are going to take you over and that this is how life will be from now on. Recovery will take a while... that's true... but you're only three months in and you still have so much time to keep getting better. Do what you can and celebrate what you can do. If you look back three months, I imagine you'll realize that you're doing better now than you were... and you'll probably keep getting better.
But, focus on your mental recovery now, as well as your physical recovery. Getting your head on straight will help you see past the stuff dragging you down and get back to your life. Depression lies ... don't listen to it. You're doing well, you're getting better, you will recover.
I am having surgery in November this year. I may have ovarian cancer so they are removing my ovaries, tubes and possibly my appendix. I feel your pain I really do. Feel free to msg me if u wanna chat