Pulmonary Embolism: Want to connect with Blood Clot Survivors:

Posted by camoz7156 @camoz7156, Jan 20 6:55pm

Im new to this forum and look forward to speaking with everyone. I hope this can be a help to all.
I was diaginosed with a Bi-Lateral PE and had over 100 clots in boths lungs and left leg during COVID. I was diagnosed with a Bi-Lateral PE and 100 clots in both lungs and left leg. After doing a ton of blood work and not really getting answers the doctors leaned on COVID. After 2 test both came back negative. So after a week in the hospital and really no answers I was released.
Me and my wife had to fight to get me in to see doctors we thought would be helpful to find out what was happening to me. I was told I had APS and a couple weeks later told I didn't. The doctor told us very proudly that I no longer had APS due to me not being able to have a miss carriage. After switching doctors I thought we were on the right path. Turns out after wasting 4 years and me saying I had enough we pushed for one last hope.
My neice had been sick for a while and getting the run around. Her mother had reached out to the Mayo Clinic and fell in love with everything there. After hearing the stories and praise I thought I should go out on a limb and try also. I am so glad that we did. We have been mind blown at how professional everyone is and how they spend time breaking down everything to you. After being told by the doctor at Mayo she thought what I had been misdiagnosed it kinda knocked all the wind out of my wife and I. Then the doctor picked up the pieces and started showing us why she said this and how the local hospital/doctors I been going to where wrong. Im happy to say its going to be a long road but we are slowly getting where we need to be.
I leave this post with this. If you ever have a dought or want a second opinion don't be scared to go and get it. It just might save your life.

Interested in more discussions like this? Go to the Lung Health Support Group.

@camoz7156, it is great to hear of your experience at Mayo Clinic after what must've been a very scary ordeal. I have moved your discussion to appear in several related groups including Lung Health, Heart & Blood Health and Post-COVID Recovery so that you can connect with other blood clot survivors like @scraik @jwb1948 @thankful @kndaustin71 @olafsonj123 @kjcarlson @ladyaceintx1 @cherrry @maryj65 and more.

You may also be interested in this related discussion:
- Looking for others with Pulmonary embolisms https://connect.mayoclinic.org/discussion/looking-for-other-with-pulmonary-embolisms/

@camoz7156, how are you doing now? Are you on any treatment? What precautions do you take to avoid future embolisms?

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