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.
Hello everyone:
Well, I finally got the results from my blood tests and they found that I have one gene for Factor V Leiden. I'm about three weeks from diagnosis and back to work. Today was really tough because I was having this constant pain in my chest. At the same time, I had to manage twenty four students. I called for a sub. and took a break for about thirty minutes. It's really scary.
Quick question: When you had your blood tests, did they check for possible cancer? I'm curious because they did that with me.
Dar.
Well, I finally got the results from my blood tests and they found that I have one gene for Factor V Leiden. I'm about three weeks from diagnosis and back to work. Today was really tough because I was having this constant pain in my chest. At the same time, I had to manage twenty four students. I called for a sub. and took a break for about thirty minutes. It's really scary.
Quick question: When you had your blood tests, did they check for possible cancer? I'm curious because they did that with me.
Dar.
As part of evaluating continuation or cessation of Warfarin, the hematologist did require that I get separate cancer screenings from a separate specialist.
If I had one thing to do over again, I would have had the bloodwork done sooner, as you did, rather than 11 months out. I was found to have FVL Heterozygous, and that was just one more contributing factor to the "perfect storm" that made an SVT, for which I was sent home untreated, turn deadly within a few short weeks. There is a bit of comfort in learning the "why" and "how" parts, even if still trying to recover from the "what".
I was tested immediately too. I was 41 at the time, (2011) and with good insurance, so they checked everything, from genetic testing to a full torso scan for cancer. That was kind of scary because I had to spend a few weeks thinking not only about dealing with the DVT/PE, but also wondering if I had cancer! My primary referred me to a hematologist to handle all of the details, but he also kept appraised on everything they did (I have to admit, I have an exceptionally awesome GP). In the end, the scans were all clear (which I have to admit, was good to know). I was on estrogen based birth control at the time of my PE, and that's probably the largest contributor to my PE. However, I too am Heterozygous for FVL also, and even though the clots in my lungs have resolved (they did that within a few months), thanks to the extensive clots that developed in my leg (that caused the PE), being over 40 and being Hz FVL, my hematologist wants me to stay on coumodin for life.
I was reading in one of your other posts about being healthy before the PE. Me too. I was pretty fit, never smoked, and had been running 3 miles per day plus doing Jillian Michales workouts just days before the PE (in fact, it was probably a sprained ankle combined with a long drive home that triggered the DVT's). I'd never been to the ER before the PE (even for horse riding accidents!). So, I know how you feel. Every doc and nurse I've seen since I had my PE has asked "How did this happen to YOU?" Truth of it, it sucked... It took me a full year to be back to "normal" (I'm a college prof, so also a teacher :-), and even then, I'm probably only 90% of what I was before.
HOWEVER, that's 90% better than a lot of people fare with this, and it DOES get better. The important thing is to rest when you need to. If you're on blood thinners, trust in the fact that they are protecting you from further clotting, but also recognize that it's going to take a while for you lungs to heal, and for your body to adjust to what happened. It is a pretty serious trauma, it's tough to bounce back. I still sometimes have to lay down and take a 20 min power-nap to make it through the day. But it's also taught me to stop and smell the roses a bit more. I was working 24/7 before and was a perfectionist about everything. Now my body has forced me to stop and rest and just chill from time to time. It's probably something I needed to learn to do anyway.
I should also say that the people on this board like RMB, TNT and RetNavy really helped me through it all. I came back to visit a few days ago (haven't been on the boards for probably a year), and found that just posting and getting one reply really helped! It also helps to help those who are experiencing things we've made it through :-)
Hang in there!
KS
Indwen
Yes, I was tested for cancer first. Ultrascans etc. Very scary as they couldn't work out why I'd had PEs. It was 6 months later I had the genetic tests and founc out I was FVL Homozygote. It's a couple of years later and things are looking OK (other than recent unrelated bike crash - but that's nothing to do with FVL). Best wishes for the future. I hope all turns out well.
Andrew
indwen