So I’ve been a little busy lately focusing on my breathing. No. I’m not doing yoga. I had a pulmonary embolism a couple of weeks ago and it’s been a real eye opener. This isn’t my first foray into the world of clots. I had a TIA (self resolving stroke) about 3 weeks after I had my youngest child. That was 8 years ago. So, I assumed it was just a weird pregnancy thing and after a billion blood tests my doctors agreed.
Me two weeks after the PE. I am so grateful for the opportunity to continue my life!
Before I go any further: if you are in hospital right now and desperately looking for information; calm down, you are OK. I know you are scared, I was out of my mind with fears coming from 50 different directions, but once you are stabilized and getting blood thinners your chance of dying from your clot goes down drastically. (I wished all posts I read while I was in the hospital started with that fact! Usually, I was several pages into information about clots, before people would share that.)
Can you get more clots? Yes. Can you die from them? Just like my TIA I am at a higher risk from dying from a clot in the next 3 years. I don’t want to paint a rosy picture for you and say you get one and you are done. That you will go back to life with no risks, no effects and you don’t have to worry:
It makes a big difference in WHY you got a PE in the first place. Being immobile is something we can usually work on. Stopping supplemental hormones? Yeah, I can definitely change that. Get my leg veins worked on? I can only seal off so many bad veins. Had surgery caused it: I would be aware of that as a risk factor. But inherited clotting disorders? The possibility that the strep infection I had influenced my DVT? Yeah, you really need an expert (no matter what we think caused our clots), that you trust and are comfortable with, to help you along this path. This is a long haul issue, not a get it and forget it disease.
I’ve taken a lot of photographs over the years for this blog. It is a strong reminder to appreciate everything. These pictures are of moments I don’t get back but have the opportunity to enjoy again. My new life will be full of those once in a lifetime, gentle and profound moments, too. If you have had a PE diagnosis: you are already a survivor!
I don’t know if you’ve had a big health scare, but I think it’s very human to go into denial about it. Like: for a decade! I’m serious. I even contemplated another pregnancy. I lived in lala land, and for a long time that worked for me. I think it’s the same nagging voice that used to tell me I needed to quit smoking (which I did about 15 years ago) as I lit my next cigarette. It was the “one day I’ll deal with this” voice. This voice of urgency, accompanied by ritualistic denial and procrastination, also appeared 16 or so years ago when I found out I had inherited the bad leg veins that run in my family. I was told they “weren’t that bad” but they would be covered if I wanted them closed. I put it off. I got married, I had babies, I was a completely focused and dedicated mom. But I put it off too long.
It’s human to deny what you are terrified of. But that doesn’t really help you, if you are really needing a lifestyle change (or in my case vein surgery and to stop my hormones!)
A couple of months ago I dragged myself into the doctor and told him I was peri-menopausal and miserable. (I am sorry to let you younger gals in on this, but it is just as bad as puberty. Mainly: Hell.)
I got to visit Hawaii last year. Such wonderful memories!
He had the answer: take estrogen. You’ll feel like your old self! And I did.
I took the estrogen. I felt awesome! In fact I took the estrogen pills after I was prescribed the cream (which I guess is less likely to get into your blood and try and kill you.) I figured I was only taking half of the dose and I had a half of a bottle left so I’d finish it up and then start the cream. (I’m good about being frugal and it made sense at the time.)
I don’t know if you are vain like this: but I had my hair growing back in (thicker than in high school), my skin wasn’t crepey looking, I was losing weight and I had energy. It was really fairly miraculous. I loved my estrogen pills! Plus, all the annoying girl stuff that was happening: constant pain, unusual “times of the month” and the super short fuse I’d developed was gone.
I find these little time capsules, called photographs, amazing. All of these small moments become amplified as I look backwards. What new and wonderful things would I have missed, had this blood clot been fatal?
Yes. My doctor mentioned blood clots. But either I’m super stupid or he didn’t explain exactly how common blood clots are (and therefore your chance of sudden death) and that they are not only a serious but… common… issue. I have always heard about the clot issue. I had been shrugging it off since I was old enough for “the pill”, and I don’t think I’m alone in that.
My pulmonary embolism started in my leg. My foot (out of the blue) became really, really sore. I’m a mom. I always put myself last. This wasn’t any different. But by the third day my entire leg was sore. I couldn’t relax the muscles in my foot or leg. It was like having a charlie horse but nothing would make the muscles release. I couldn’t put weight on my leg to walk. I had my husband drop me off at the ER. I have some medication that might cause muscle issues, so I was focused on that.
As far as history, my family on my dad’s side, including my younger brother, have had to have their leg veins closed. My vein problem is hereditary but… mine never really bothered me much. Sure, my legs swell up on long flights and long car rides, but then they go back down. I have had compression stockings, but those are so incredibly difficult to get on and off that I rarely wear them. I think it was a combination of risks that added up to my clot.
It took them two hours at the ER to even see me. I’m 45 years old. I don’t fit the profile for blood clots. They did an ultrasound on my leg and found nothing. But: while they were pushing around on my leg it stopped hurting. My d-dimer test was positive (this is a test that indicates that there is a possibility of a clot). But there were a few things that could cause that other than a clot.
At this point I’ve been at the hospital for several hours. I’m tired. I am not getting any answers and my leg is finally relaxing. I was ready to go home. The ER doctor was getting ready to discharge me. He came in, and we were discussing my release, when he asked me whether I’d had chest pain recently… “Why yes, yes I have.”
(This is the other reason I haven’t been keeping up with my blog!) I am so incredibly stressed out! Three years ago my husband lost his job. Then after a year he got it back, only to work out of state for a year and a half. I raised our two children, on my own, during that time. Then, suddenly last summer he lost his job AGAIN! Eight months before his retirement! It’s been Hell. But when I get stressed I get angina (chest pain) and I’ve learned to ignore it. (Don’t worry his job is stabilizing again and he’s about to finish his 8 months.)
Did I have chest pain? Yes. Is that unusual? No. But it was enough to have him delay releasing me and to send me in for a CAT scan. And THAT was when they found the clot in my lungs.
As far as my symptoms: I had very mild chest pain in my right lung. The pain in my leg was 100 times worse but my leg was only slightly swollen. My oxygen level was at 100 percent. I was not having trouble breathing. My pulse rate was high (115 or so) but it’s always high. Now I had noticed, for about a week, that my lips looked a bit blue. I was sick with strep throat at that time so I thought it was just from being sick or maybe the new lip balm I was using. I will never overlook that again!
Me as soccer mom! I didn’t think I could make it through a year and a half of single parenting, but I did and we still made time for soccer!
The strep is a constant problem with my kids in elementary school. We’d all been on antibiotics. I was on my third set of antibiotics. The strep my kids bring home is no joke. But that was part of why I got the pulmonary embolism. I had been sick for almost 3 months. I was laying down a lot. I had helped my son in from the trampoline the day before the leg pain started. He’d hurt his ankle and I was supporting a lot of his weight to get him into the house.
All of these little things apparently caused the perfect storm in my body. Just simple little things that led up to a serious problem. It made me extremely aware that just a few things can bind together and create chaos. I need to be very cognizant now of everything when I get ill.
Halloween 2017. I had a blast decorating our home and yard! I was a jester (or maybe a “not so evil” clown…if those do in fact exist.)
Had this doctor sent me home, I would have gone home, the clot would have grown (which is apparently the tendency of clots) and I would have died. I would not have come back to the hospital until it was probably too late.
God be praised that that scenario did not happen!
If just one question had not been asked…wow, I wouldn’t be here.
My kids are young. I am not ready to say goodbye! It’s really hard for me to wrap my head around what could have happened: Me in a box in the ground and my family completely adrift in mourning.
I was in the hospital for a couple of days. I was getting a blood thinner shot in my stomach every 12 hours (good Lord those hurt!) But, it honestly was a miracle! It also was a miracle that one of my nurses (who looked my age or younger) had also had a PE. It was so helpful to talk to her. She told me everyone I talk to will tell me how “so and so” that they know died from a PE. She told me to tune them out, and so I have. One out of every three people who get a PE don’t survive. That is a horrible statistic.
I will say it again: I am a survivor! This lady’s blog: https://bloodclotrecovery.net/how-long-does-it-take-to-recover-from-a-pe/ helped a lot when I was first diagnosed. She has endless comments and they really helped me realize that I am not alone! There are comments that start in 2013 and go right up to today. It is so wonderful to stop the free-fall through your fears and grab a cyber-based hand to comfort you. I hope my story will help you in this way, too.
Back before I got the CAT scan though, I was talking to the doctor: “Yeah, but wouldn’t I know if I had a clot in my lungs?!”
Apparently not. And I’m not some weird statistic. Most pulmonary embolisms either kill you straight out, when they hit your lungs or cause mild symptoms which get worse as the clot grows. I’ve read on some forums that the symptoms (like shortness of breath, fatigue and chest pain) of the pulmonary embolism can take a couple of years (after it happens) to get back to normal.
BTW most of these are selfies. I’m the only person in my family other than my MIL who takes photos. If I wanted a photo, that I was included in, in the last 12 years of my life it’s had to be a selfie. “All right, Mr. DeMille, I’m ready for my closeup“ does not happen in mom-ville.
Hospital time is super boring and I read a lot about PE’s, especially since I thought everyone who had them died. If you have had a PE and you are feeling scared and alone look up PE forums. You will find thousands of entries with people of all ages and there are updated new posts almost daily. They were so helpful in the early days of my diagnosis.
So what have I learned in the last three weeks?
1.) There really are miracles and I’m one of them. If you have had a PE: YOU ARE A MIRACLE TOO!
2.) Pulmonary embolism is not a death sentence if it’s caught early and you do not have complicating risk factors. Here is a pretty thorough site that can help: http://www.clotspot.com/pulmonary-embolism-risk-factors-and-prevention.html
3.) This isn’t just going away, and I’m not all better, but I am slowly improving. Some days suck. Some days are almost normal. I am grateful for both. I am alive, and that’s a pretty awesome gift to be granted.
4.) I can’t take estrogen. DUH! And when your doctor mentions clots associated with medicine, your mental answer should not be: “Yeah. Yeah. Yeah.”
5.) I am tired. I get winded easily. It’s bad enough that just standing and trying to do something else (like: making lunches for my kids, showering, talking) is really hard and I need to rest. Sometimes I have to stop before I can get it finished. (There’s no way I could hold a job right now and I’m so grateful my husband is home to help with the kids!) Sometimes: a gift is a horrible occurrence (like my husband losing his job for 6 months) that turns out to be perfect in its timing for something else! Having him home is so huge. I would have put off the ER visit if he hadn’t been here (which means I probably wouldn’t be here!)
6.) Having a pulmonary embolism puts you at a higher risk for another, but that doesn’t happen very often, especially if you stay on blood thinners. However, you should count yourself lucky if you get to the end of the time you are prescribed thinners and get to discontinue them. Some people won’t ever come off of them, but don’t freak out if your need for them ends. It’s a good thing if you don’t need them anymore!
7.) They don’t give you clot busters, or do surgery, unless you are in dire shape. You take blood thinners to prevent the clot from growing and your body works on the clot on its own. Once you start the thinners your clot will not get worse and you are probably NOT going to die, so dial down the anxiety if you can. It doesn’t help. Sometimes the clot never leaves and turns into scar tissue. Your body will reroute around the clot if it can (or if it needs to.) But yes, the clot causes damage, permanent or not: you need to watch for things like infections and pneumonia.
8.) I can’t do anything that puts me at risk for an injury. The blood thinners are not reversible and if I get badly cut… or fall off a ladder and smash my head… or go sky diving and slam into a tree: I’m going to bleed to death. And the ball park for continued blood thinners so far is 6 months.
9.) I technically (according to the pamphlet for the thinner I am on Xarelto… and from trying to find out on forums) could have my weekly glass of wine with a movie, but my body processes the blood thinners through my liver (where it processes alcohol) and its risky. I’m voting no on that, unfortunately. And then there are things that you have no choice to say yes or no on: aspirin or Ibuprofen, Pepto Bismol… there’s a lot of stuff that can increase your chances of internal bleeding that are on the “no” list that you just don’t get a choice on. Look up your blood thinner and get acquainted with the “no” list for your particular drug. Also, set your alarms for your medication. You cannot screw up your blood thinner timing. It’s important to take it EXACTLY as prescribed!
10.) I have a follow up with a hematologist. Don’t freak out if they send you to a cancer clinic. It’s a dual specialty.
11.) Keep MOVING!!! Your single best bet that you can do to not only help your recovery but decrease your chance of another clot is to get up and move every 2 hours. If you are on a flight: get up and walk the isles. Tell your flight attendant you’ve had a PE. They will support you in stretching frequently! If it’s a long car trip: get out of the car and walk around every two hours and stretch your legs in the car as you travel. As far as altitude changes: check with your specialist. My family lives in the mountains in Colorado. I am not sure I can visit, especially since I get altitude related edema and I already struggle to breath up there. That will definitely be a call for my doctor to make.
My life isn’t back to normal, but I’m also not asleep all day (like I was in the first week and a half.) I’m progressing slowly. Also: (YAY!) my husband got fantastic news about his job today (and we have family who can help me while I recover.)
So. I’m grateful. I love that this gave me the opportunity to really appraise my life and where I am going. I have had to slow down considerably, so I am doing fun, low energy things with my kids that I usually don’t make time for.
Every breath I draw is yet another gift!
Am I freaked out? Oh yeah. Still! But I tell you what, as long as you live through your challenges: you have got to love the new perspective it gives you. So, I love my clot. I love it because I was going to have it whether I decided to love it or not. If that is the case I will look at it with gratitude. Gratitude because if I hadn’t had it: I wouldn’t be continually amazed at every little thing I get to share with my kids and my husband. Gratitude because the odds are not great for surviving this, and I did. So thank you clot for the wake up call. I am grateful for the new perspective… and thank God I didn’t die!
If you have a story you’d like to share about a PE, DVT or a stroke, please share below. It helped me so much to read about other men and women who have been through the exact same thing. We’re strong ladies (and gentlemen!) So much stronger than we realize!
In an update: It’s now September. My pulmonary embolism was in January. My hematologist ran out of tests to run.
I’m negative for any clotting disorder (that they currently can test for.) However, this was my second clot. My granny had multiple TIA’s in her life. So, I’m pretty sure I have something inherited, they just don’t have a test for it yet.
I was given the choice of xarelto for life or aspirin. I chose aspirin. I’m tired of being paranoid that I’m going to get cut or fall from a ladder and bleed to death.
Xarelto has no antidote. If you start to bleed, you can just say goodbye. I’m much happier with the idea of aspirin. My doctor said I would have a 1% chance of a future clot with xarelto. A 2% chance on aspirin. I’m OK with those statistics.
I have nearly come back to what I could do before the clot. All that is left of the evidence of a PE is a tightness in my chest near my heart, but that may be my Fibromyalgia, and therefore unrelated.
I apparently have to continue to deal with super heavy periods. Like: as bad as after delivering a child…every month. No fun for sure. But with Tylenol and iron supplements it’s survivable, and I’m attempting to be grateful for that.
My last thoughts are: it gets better! Make sure you get treated if you end up with depression from your diagnosis. I got it and didn’t recognize it. It co-mingled with all of the other symptoms and my life slid to a halt for a while. I’m doing much better now.
You will heal, keep the faith!