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.
Where do I begin? Usually at the beginning right? But where is that?
A little back story. This time last year I was pregnant, atleast I thought I was, my baby had already died but I didn't know. I finally found out on the 13th November followed by a D&C on the 2nd of December. Fast forward to January and guess what I was pregnant again!!
The pregnancy. Everything was going fine until 22 weeks, just a few days after my 26th birthday, I started feeling unwell as though I had a chest infection, I went to the GP and was prescribed antibiotics and steroids, but less that 24 hours later things got worse, it was unusual for me to get a chest infection in June anyway! What was happening? I was rushed to hospital and taken into resus, the doctor gave me oxygen and discharged me, I then went to the baby department to have my baby checked, as soon as they looked at me they rushed me back to resus, this time a different doctor came to see me, everyone was baffled of what was happening, no amount of oxygen was working, I was finally sent for an xray which came back clear. So why couldn't I breathe? Eventually I was sent for a CT scan, that's when it was discovered that I had 3 blood clots on my lungs, by now I was so ill, gasping so hard to breathe, then I began vomiting up blood. I honestly believed that the resus curtains were the last thing I'd see. A lovely woman named Amy came down from intensive care to see me, she took one look at me and told resus to get me up to intensive care NOW! I was taken to intensive care and by now I was begging them to help me to breathe, I was begging to be put into a coma and to have machines breathe for me, they considered it but they said if they did my baby would die and I could die. Honestly in that moment I didn't care, that might sound evil but I also have a 6 year old who needed her mummy and I was so scared I just wasn't thinking. I was put onto a machine that did most of my breathing which was safe for the baby, and I was awake, they began injecting me with blood thinners to reduce the blood clots, eventually it slowly began to work but I was still so scared, I didn't know if I wanted to die and it all be over or if I wanted to get better. After a few days I was moved from intensive care to critical care, eventually I was getting more better that I was moved to a different hospital to the respiratory ward. After a further long 12 days, I was allowed home, a few days later I was readmitted into the respiratory ward for an infection that I'd picked up from hospital. Eventually I got out and I thought I was getting better, I had my daughter on the 15th September, she's now 7 weeks old (born 4 weeks early) for a while I had no pain at all, but for the last week I've been getting pains in my chest and back (under the rib cage) I am still on blood thinning injections, but honestly every time I feel the slightest twinge of pain, I get so scared that it's all about to happen again, and this time will be the time that kills me and takes me away from my two baby girls.
The Doctor. I've seen the doctor but they don't seem to understand they suggest I have counselling but I don't see how someone who's never been through it can really help? I think it would be better talking to people who have survived the same sort of thing and who are healthy now?
Smoking. I do know I need to give up smoking because I believe that's causing some of the pains I've been getting this past week, but it is so hard.
I also suffer. Asthma, which doesn't help matters because if my asthma plays up I don't know what's going to happen next.
Talking about it. I've spoken about all of this with friends and family and my partner but nothing they say seems to help. I feel like I'm losing it, I feel like if I don't gain some control this is going to take over my life. I never used to be scared about death until I was put in a situation that brought me close.
Please help. Any advice or stories from others that have been through this would be great.
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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 sometimes in the thick of it, you just have to tell yourself over and over again that you're on anticoagulants and so you're protected from further clots. It's really hard but you kind of have to find a way to just focus in on the most rational thinking you can manage. Eventually this all gets easier. It helps to have distractions. Try to get out there with your friends and family. While they can't understand (how could they), they are helpful in that you can try to redirect your thoughts so that you're engaged in what's going on with them, how they are, etc. It gets very easy for our worlds to get super small after such a life threatening event. So you almost have to will yourself out of some of that.
Congrats on your baby. You'll be ok. Seriously, everything you describe is pretty par for the course for most of us.
Truly consider counseling.
Both things were very helpful for me (although, I realize that they may not be for everyone). A therapist can be so helpful, just because they can help you recognize and cope with what you're feeling. It can be nice to talk to someone who won't take anything you say personally (like maybe a friend or family member can). It's also a relief to be able to talk to someone who hasn't already heard it all ... how many times can you talk to a spouse or friend about anxiety and fear and what happened?
The antidepressants were great because, until I started on them, I wasn't aware of how much energy I was using every day just to keep my head above water and keep moving. With the meds helping with that, I was able to turn some energy to healing and taking care of myself. It was really nice to get that additional emotional support for a while... I stayed on them for about two years.
I mean, you've fought SO hard to be here for your family and your girls physically. Now, you just have to put the same amount of energy into being here for your family *mentally*. You're right that the emotions and anxiety can just run you over, if you let them. It's up to you to gain control over this... and it is something you CAN definitely do.
If therapy and meds don't work for you, consider meditation, massage, exercise (whatever you can manage), journaling, and etc. Whatever brings you a moment of peace and helps you remember life *outside* of your clots. But, truly, your doctors are suggesting therapy because they really believe it can help you ... it's isn't that they don't "get" it.
Hang in there... it can be really challenging both mentally and physically for a while. I tended to get an increase in symptoms when I got more active and when the weather changed and it was too hot/cold/humid. You'll probably have symptoms come and go for quite a while. If there is something drastic that seems different with your health, that's the time to check with your doc. Otherwise, give yourself a little time to see if whatever you're feeling resolves.
One other note... I also have mild asthma. My asthma doc was the one who finally sent me to the ER to get the clots diagnosed. Honestly, at this point, I'd say that I'm back where I was before the clots. I don't think there was any long-term effects on my breathing at all. But, yeah, it can add a complicating factor to recovery, for sure.
Read around on this site and I'm sure you'll find a lot of stories that really resonate with you. Hang in there! It will get better.