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Sharon703 
Last week I went in for my weekly hematology visit and learned that my INR was about 3.5. I hadn't done anything different in the preceding week, other than maybe one additional glass of wine. Although I was apprehensive about it, my hematology nurse practitioner cut my dose in half and had me skip a day of coumadin and come back in 10 days. I was very worried that then I would not be therapeutic and risk having problems with my pulmonary embolism, but I followed her orders. For the entire week I was absolutely exhausted; I actually had less energy that week than the previous 13 weeks since my surgery. I slept so much and yet it never felt like enough.
Then this Monday I met with a vascular surgeon about my DVT in my right leg. I'd had another ultrasound of my leg at the end of October and my hematologist nurse practitioner couldn't adequately explain to me how and why they thought they could no longer see a blood clot in my leg. In fact, she'd forgotten whether she'd even told someone in her office to call me with the results. Needless to say, I was not comfortable with the lack of information.
Thankfully the vascular surgeon was very nice. And I do mean really, really nice to me. The first thing that he said is that I "dodged a real bullet" and was lucky to be alive with all the pulmonary emboli in my lungs. He was able to explain to me that my echocardiogram showed that my heart was normal. He said that I was very lucky that was the case. He event spent time explaining to me how the emboli went through the right side of my heart. I was so thankful to learn all of this.
He also explained that in fact the DVT in my leg had resolved already at 8 weeks and that the technician did do the ultrasound of my entire leg (my hematology nurse practitioner couldn't tell me). The DVT had been in 2 deep veins that ran up and down my right leg, but the blood is flowing through again now. The vascular doctor explained to me that post thrombotic syndrome is a term that is thrown around alot and was "made up" so really my issue is that I have some vein damage from the DVT that is causing the swelling and pain. He also said that he always recommends compression stockings; that they should always be the full pantyhose/tights style instead of thigh highs and knee highs, and that they should always be worn a minimum of 2 years. He said that after 2 years I can decide if I still need them if I get pain and swelling when I don't wear them.
Also, before I even said a peep to him, the first thing the doctor said to me when he looked at the fact that I had surgery and then DVT/PEs is - "let me guess, you were on birth control pills?" Again, now this is the 4th doctor that has told me that the BC pills caused this. It really upsets me to hear this. I just don't understand how my primary care physician who prescribed these for me did not know this could raise my risks.
So the vascular doctor said that I need to plan as if I will always be high risk for DVT and PE for the rest of my life. Its possible that I won't have any problems now that I will never take BC pills or any estrogen ever again, but there is no research to substantiate a lower risk for women like me. He said that I can return to regular activity (except anything that would bruise or cut me) in terms of my leg, but I still need to check about my pulmonary embolism and my surgical incision. If I plan to fly, he said that I should ask the hematologist about aspirin therapy (once off coumadin) and that I need to stay really hydrated, get up and walk and do the leg exercises in the seat, and to wear the compression stocking. The doctor also said that I was always welcome to call him with any questions that I might ever have. I felt so much better having spoken to him. He was able to easily explain to me about my leg and made me feel at such ease in knowing the good news that my DVT was really gone and not just an error.
So I was feeling really pretty great about this news on Monday. And then I went back to my hematology nurse practitioner yesterday to do my INR and now I am too low and not therapeutic. Argh!!! I am so frustrated with her. I told her last week that I was concerned that she was cutting my dose back too much considering that I had been on the same dose for almost a month and had been in range of 2-3 the whole time. So this week she says "oh yeah, maybe I did cut you back too much." :( So now I am back to taking exactly what I suggested last week. It scares me that I might know more than her on this stuff with my body. She is just so very flaky. She is nice and I like her as a person, but she scares me sometimes when it comes to her lack of organization with my health.
Overall, I feel very blessed to be healing so quickly. Although I still have a fair amount of incision pain, and a rash now on my incision, and some lung discomfort and the costrochondritis symptoms, I am so much better than I was 12 weeks ago. I am so very fortunate that my body has already reabsorbed the DVT and many of my pulmonary emboli in such a short amount of time. I'm trying to remind myself that each day I am getting better now instead of getting worse.
Comments
Sharon,
Praise the Lord! I am so glad you are on your way to healing! I have learned that some on the pain that we feel is the lungs healing themselves! My husband postpones his trip to L.A. for the beginning of next week! That really heals me alot; and I can sleep better knowing he is there to heal out. God is Good.
Your INR should level back out pretty good; so I wouldn't worry about it to much. I really enjoyed reading the stories posted on your facebook-thanks for doing that! I am sending all my neices and family to the site! hugs, Cathy
1bobcat
Aww Sharon!!!
You have a great dr! Yeh thats always the first question of any dr i see now even like an ENT is like "oooo were you on birth control" Jeez it amazes me more each day that they give this crap out like candy! But im happy for your news and I understand your frustration with the hematology nurse! Mine nice but flaky too, one day im all happy cuz im eating good again and my inr is 2.3 and I say "oooh im sorry its low ive been eating more veggies lately" and shell say "oh yeh please lay off the veggies...we dont want you too low" AND THEN! i go back in two weeks and low and behold my INR is 2.1 and shes says "perfect...keep taking the same dose" UMMM HELLO whats the difference... UGH!
cupcakedecay