Wednesday, January 4, 2012

The nightmare that won't end!

Hello all! When I rang in the new year last Saturday night, my only midnight wish was that this year would be better than the last... I was wrong!
We are only four days into 2012 and I have had nothing but bad news. I had an appointment with my primary care doctor yesterday and was given quite a blow. She has officially diagnosed me with Post-Thrombotic  Syndrome (PTS) and irreversible nerve damage in my groin/thigh. I was so angry....all the procedures that I have undergone since September was supposed to prevent permanent damage. What they didn't tell me is that approx 90% of patients with and Illiofemoral DVT (which is the type that I have) will develop PTS within 6 months of the diagnoses of the DVT. And since I suffered 3 recurrences, my number jumped up to 99% probability. What this means is that I will suffer from constant pain and swelling for the rest of my life! Treatment is now relegated to pain management and constant monitoring for new clots. When I saw my anti-coagulation nurse today my INR is still far to low which puts me at a higher risk for further clotting. The original clot is still there, the filter that protected my lungs and heart is not, and that scares me too. The mortality rate of patients who suffer a pulmonary embolism (PE) is's a very scary number! I know people who have suffered a PE and survived, but the statistics are definitely grim.
I really feel like I am trapped inside a nightmare and can't wake up! When 2011 finally came to an end I truly had hope....sadly, that hope is gone! I know I have support, but I can't help but still feel alone. I feel helpless and afraid! I feel broken...physically and emotionally! I have amazing friends and an even more amazing husband, but I can't help but think that he deserves better! He deserves a healthy, vibrant and happy wife! Brian is the most amazing, patient and loving person I have ever known...I truly am the luckiest woman in the world when it comes to my relationship with him!! I also feel like my kids deserve a better Mom....a Mom that can play and laugh with them. I know they love me, and I love them more than anything in this whole world, but I can't help but feel like both them and Brian are getting the short end of the stick!
I still have plans to contact that Dr in California, but it won't fix the permanent damage that has been done. I am hoping that he can at least get rid of the clot itself so that I can have a little peace of mind...only time will tell I guess. For now, all I can do is try to deal with this new information and pray!!!

Thanks again for reading! Until next time.....

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