Saddle Embolism firsthand experiences
Posted , 6 users are following.
i am 27 and was diagnosed with a large saddle embolism 5 days ago. I had been having shortness of breath, a rattle in my right lung, fatigue, pain when breathing deeply since around thanksgiving. . On january 23rd i went in for a CT and was wheeled from the CT scan room straight to the ER. I was released after three days in ICU on Eliquis. i am just looking for personal experiences to calm my nerves. i see a pulmonologist tomorrow.
0 likes, 9 replies
brucegt logan51654
Posted
first i hope everything works out for you. i'm sure it will as once you have been diagnosed you are/should be out of any danger.
it's been 18 months since i had multiple small clots. (pe's). it has been a long recovery for me and very frustrating. but for some it's a short recovery with few side affects.
please keep in mind that everyone is different. what applies to me won't be the same for others.
see what tomorrow brings. ask questions. lots of questions. and if your aren't satisfied with the answers ask again!!
good luck.
peter54321 logan51654
Posted
Hi Logan,
Well, the worst bit's over and from here on you get better. As Bruce says, it is an entirely variable process, some recoveries are fast, some not so fast. It will improve though. One key thing to do for your appointment is to make a list of questions, because as soon as you get in front of your pulmonologist, your mind will go blank! Mine was multiple bi-lateral clots in 2015 and was a proper mess. Recovery took a while, but post recovery scan shows all clots have gone.
Good luck for your appointment. See you when you get back.
Peter
TGrove logan51654
Posted
Everyone is different. It took me a couple years to feel better, but a lot of people feel much better within months. The worst part might be the emotional aspect. Most of us go through anxiety, so try to stay calm and know it will get better. It just takes time.
brucegt logan51654
Posted
I'm an Australian. My DVT/PE experience happened while visiting the USA. The specialist in the USA suggested some form of councelling on my return home. When I got back to Australia my specialist also suggested counselling on my first visit to him. I never thought I needed counselling. It's a man 'thing'. "I'll be right". 18 months later I'm now seeing a counsellor. Don't under estimate the mental issues you may have. Get help if you think you need it.
logan51654
Posted
My appointment wasn't what i expected. Apparently i have several clots in each lung and they're putting me on oxygen. The hospital never even mentioned anything other than the saddle embolism. I am frustrated and scared.
brucegt logan51654
Posted
logan51654 I had very low oxygen levels when I got to ER. I was very agitated and somewhat 'loopy'. They say due to the very low oxygen. My understanding is that it's the low oxygen levels that will do the damage to your system. In fact I was a real mess in ER. Vomiting and LOTS of pain. I have 4 ongoing issues. Blood inflammation. 30% loss of lung capacity. Nerve damage. And chronic fatigue.
From my understanding once you are on 'thinners' you are 'safe'. Then it's a matter of sorting out the side affects. It may take sometime. Be patient. Take things slowly. I hiked and climbed. Traveled overseas a lot, (once or twice a year), that has all stopped. But I'm way better now than I first was. It's a slow journey for some. But you will get there. Keep asking questions and if you don't get the answers look for someone else.
ben91586 logan51654
Posted
i am a little over four months since my multiple pe's and it has been s very slow recovery. my biggest problem has been extreme fatigue and sleep deprivation due to anxiety. i have great doctors and all tell me i will get passed it. but it is so frustrating as i used to be so active. i do find it is important to write down all of your questions for your appointments. and don't search on line as it makes your anxiety worse.
brucegt ben91586
Posted
Yes fatigue is also my real issue. The fatigue plays on your mind and limits what you want and can do. I have found out the hard way that the mind plays a key roll in recovery. Don't be afraid to ask for help.
logan51654 ben91586
Posted
i have a 7 month old so i am used to no sleep. my biggest thing is i can't take care of her the way i should. her father, my boyfriend, is amazing and does as much as he can but he is night shift. so it is harder. everyone is treating me like i am going to kill over anytime i stand up. my boyfriend acts me anytime i stand up what i am doing. i am 27 years old and i am being treated like a dementia patient. they keep tabs on me. i am also struggling with the fact i will need to be on oxygen out in public.