Sharon703's Journal

I’ve been finding it therapeutic to write these journals, so here is another update in my road to recovery.

Last week I met with my hematology nurse practitioner for my INR check and for the first time in months, I only had to do the finger prick test. J I’ve come so far in fact, that the blood lab gang were stunned that they didn’t need to do a CBC for me and were commenting on how far I have come in getting my blood drawn. It was such a good feeling. After seeing these ladies now over the last 22 weeks, many times several days a week, it felt so wonderful to hear others acknowledge the progress that I have made. My INR balanced out and is now 2.3, which is in my target range of (2-3).  My coumadin dosage stayed the same and I am finally able to have my INR checked every 3 weeks. I just about jumped for joy right there in the office!

I also asked the nurse if I should schedule the visit with my hematologist for the end of February since that will be the end of six months of anti-coagulation for me. Also, this will be the meeting in which my husband and I learn not only my treatment going forward for the PEs and DVT, but also the hematologist’s opinion of how risky it would be for me to get pregnant.

Last Tuesday I went for my final appointment with my pulmonologist. I had a second round of the breathing tests and then met with the doctor. Overall, I made some improvements in the last four months. But I am still below the norm on the diffusion testing- how much oxygen is carried in my blood stream. It was my pulmonologist’s opinion that it is what it is now. Basically, there is no need for me to keep re-testing, and that is likely my long-term damage. He also is of the very strong opinion that my multiple, bilateral pulmonary emboli and DVT were caused by my gynecological surgery and taking birth control pills. He feels that I should come off the anti-coag therapy as soon as I hit 6 months and will be stating his opinion in the reports he sends to my primary care and my hematologist.

Overall, this was a great visit. I was again reassured that I have made a great deal of progress, but I walked away still concerned that my doctors are split in terms of their opinion on how I got the DVT and PEs. Since my future care would differ based on whether it was a genetic predisposition or the Pill and surgery, its very hard for me to know what to think. My OBGYN and my Primary Care both think that it was not the Pill and surgery, but that there is a genetic marker that has not yet been discovered for me (since my dad also had a DVT). But my hematologist, pulmonologist and vascular surgeon consulted all believe it was the Pill and the surgery. If that is the case, I would be off the anti-coag therapy very soon. If my Primary Care and my OBGYN are right, then we would need to consider lifetime anti-coag therapy.

I guess that means that my husband and I are back to researching and preparing for the meeting with my hematologist at the end of the month. Once we hear what he recommends, we’ll determine if I need a second opinion.

While all this is weighing heavily on me right now, I am still regaining more and more energy every day and feeling so much more like I did before the surgery. There are some days that I don’t think about it at all during the day. And I find that while I still talk pretty openly with folks about what happened, my whole world does not revolve as much around my illness. Again, what a far cry from where I was just at Christmas time.