Hello,
After being diagnosed last week with my third DVT before age 25 I was looking for some support and found this forum extremely helpful to read - thought I would join.
Background story:
First of all it is important to know that I have had lymphaedemia since I was born - along with this came cellulosis (skin infections), occasional pain and trouble walking.
My first year of university (2 weeks in to be exact) there was a firedrill and I couldn't catch my breath (I thought I was just suffering from anxiety). I was currently on crutches and suffering from a leg infection (aka unaware of any additional leg pain due to my antibiotics). I rushed to the ER and was diagnosed with DVT and PE (complications arising from my oral birthcontrol and lymphaedemia).
After a hospital stay and the mandatory 6 months of warfarin I was free!
Less than a year later I had what I thought was an asthma attack (again on crutches) - and was shocked at the diagnosis of DVT and PE again (left lung both times). This time my hematologists decided that I should have anticoagulant care for the rest of my life - no big deal I was used to the INR checks every 10 days.
I had been stable for 4 years when this year (January) I had to have my spleen removed (rare complication from my lymphaedemia). I had anticoagulant bridging (fragmin and warfarin) stopping fragmin the day before my surgery.
After my successful surgery (just over 2 hours) I felt great. The second day after surgery my leg was sore and I thought it was strange so I told the nurses. I had just restarted warfarin and was still receiving fragmin shots. My leg felt progressively worse every day after surgery (which I kept telling the nurses), but I was still discharged after 4 days.
My first two days at home were miserable. I was racked with the worse pain in my life (woke up screaming etc)- I couldn't find a link between the way my leg was feeling and any of the other leg pain I have ever suffered from. My parents, having seen me suffering from leg pain before waited it out with me. My partner agreed another DVT would be unrealistic I had been on fragmin the whole time.
Eventually I went to my GP for better pain medication - she poked my leg and then sent me for an ultrasound. After having watched many ultrasounds on my leg I knew I had a clot by watching the screen. However, I was still devastated when the technician confirmed this fear. I went through the motions, over to hematology and received fragmin shots. I found out that they had only given me the prophylactic fragmin shots that anyone after surgery receives - the nurse admitted that given my history I should have been receiving a much stronger dose.
Took my fragmin for 14 days (then I am supposed to return to warfarin). However, I am still in extreme pain. I had another ultrasound - showed that my clot was diminishing. I think I might have PTS. And last night, unable to sleep decided to look up this site to see how others deal with the pain.
Anyways, thank you for welcoming me to this community.