Hi Everyone,
It has been 2 months and 4 days since my diagnosed PE. Im celebrating my 43rd birthday today and really didnt think at the time of my PE I would make it to 43. So I feel blessed to be here. Here is my story, sorry its so long:
Back in May of 2011, May 7th to be exact, I was having some trouble with pain while breathing on my right side. I slept on that side all night so thought maybe that had something to do with the irritation. It got a little worse so I called a doctor and described my pain and he told me to get checked at the ER. So I drove myself there and they ran a D-diamer test and x-ray of that area. Both were negative for blood clots and at the time they didnt mention they were even looking for a blood clot so at that point I was clueless about blood clots, DVT, PEs, etc. They just told me I probably had a muscle strain and mentioned the term pleurisy. They sent me home with Vicadin and another pain killer. I tried not to sleep on that side as it would ache at times if laying on it too long. Then as things got better, I returned to normal life. I am a mom of 3 and very active. I workout/train most days of the week, mainly for triathlon events. Ive done a few Ironmen and marathons. In fact, after that first incident, I started training for an Xterra triathlon race and my second marathon.
Then on March 26, 2013 I woke up with a side stitch. It wasnt bad so I didnt think much of it. I even went for a morning run and felt the slight pain, but ran through it. Later that night the pain started to get worse while breathing. I was feeling very short of breath and my husband and I were trying to decide about going to the ER. It was before 10p.m. and he said lets call 911 and I said, lets wait a bit and see if this will pass. It got so bad I told him to call 911 right away and remember telling him as he was talking to the person to tell them to hurry. I kept saying that and really felt I wasnt going to make it; I could barely get air in. I told him to kiss the kids for me and tell them I love them. A very scary ordeal.
They took me to the ER and did the D-diamer and X-ray again. This time the D-diamer test was still negative, but the X-ray showed something of interest in my right lung. They ordered a CT scan of the lung (not pelvis unfortunately), and there it was, a PE. They admitted me for 3 nights and put me on heparin and warfarin. I had to do 2 weeks of shots to get my INR stable. Not sure why it took a while, but my warfarin is a hefty dose and still is.
Sometime during the first 2 weeks, when they raised the dose of my warfarin again, I started to feel very strange and couldnt think. I was having trouble processing information and doing simple math. I was also extremely tired. I was very worried about how the drugs were affecting me but that passed after about a week of feeling that way. Maybe my body was still adjusting to the warfarin and increase in the dosage. My INR is now stable and I am only going once a month to get it checked. I worry about that as Im not sure how my INR fluctuates during the month with eating some salads, and trying to be consistent, but not always successful. I love salad so to keep it at a minimum is hard for me.
The good news is I have rebounded from the event fairly quickly. Although, mentally, I still have a lot of worry and anxiety about my health and not sure if Im turning into a hypochondriac. But, physically, I started working out again (per the ok of my doctors) and my first workout was April 10th; about 15 days after my PE. I started out very slow with workouts and progressively have gotten back to running and biking a fairly normal pace/distance for me. I am slower than I used to be but am hoping over time to get some speed back. I am nervous about biking and being on warfarin, as a crash would be an instant ER visit, but I dont want to live in a bubble either. I wear a RoadID wrist band that says Im taking Warfarin and just keep it on all the time. Im not sure about the racing scene this summer, but I am signed up for a sprint triathlon in July. I was signed up for it before the whole PE ordeal happened, but Im not sure if I want to race it or not due to the possibility of crashing on the bike. So that decision is TBD.
I am one of the many who have no idea why the PE happened. Lots of testing for clotting disorders which were all negative. No recent birth control, at least in the last 10-15 years. I had ultrasound of the legs while in the ER and there were no clots there. I did have a short flight of 3-4 hrs 3 days before it happened so that could have been it, but the doctors arent convinced. I continue to have some testing done to check for cancer. I have found a few things to look into further that may or may not be cancerous so Im praying for the best.
I feel really pretty good at the 2-month mark, so there is hope for all of you that are still struggling with pain and shortness of breath. My anxiety about everything is still an issue, but that comes and goes. I was doing really well for a while and then lately started to worry about cancer again.
As for the warfarin; whether or not to stop it at 6 months is TBD. Due to the fact that this PE might have been my second episode, as the 2011 incident was never diagnosed since a CT scan wasnt performed, my doctors have some decisions to make in October. I will probably be a bit nervous if they take me off warfarin especially during any travel. But I also dont want to be a lifer on it either.
Sorry for the novel, but it helps me to put my story out there and feel a part of this family of people that have gone through the same thing.
My good wishes and prayers to all of you.