Tuesday, June 20, 2017
Jeff had a follow-up appointment with his hematologist today. I was on PTO and so I went with him. I made the mistake of not going to his second appointment and I had a MILLION questions that Jeff couldn't really answer. I wish we could say that it went fabulously but, unfortunately I think we are both feeling very confused and worried. In interest of full disclosure I must admit that I have major issues trusting this physician. I do not appreciate that he NEVER takes the time to go over my husband's chart before he walks into the room. Today for example we were early, and he had plenty of time to review his chart before he came in. However, he did not do that, instead, like the other two times we've seen him, he walks in, talks all rosy and predicted that Jeff will be able to get off of blood thinners. All the while, I am sitting there thinking, "Good gravy dude, you've forgotten that he has factor five homozygous and prothombine time heterozygous!" As I watch him read the chart I literally can see his face change when he spots it, and he starts to retract his earlier statements, and then he reads Jeff's latest blood test (d-dimer)that measures how effectively his anti-coagulation medicine(ELOQUIS) is working, and tells us that although it isn't super high, it is more elevated than last month. He then says, "No, no, you will most likely be on this forever. And, you might need heparin shots if your numbers go up or if you get another clot." I ask about a million questions(like, what about the follow up CT of his damaged lung you said you wanted six months post event, what about his shortness of breath, what about this number, shouldn't we check it again in a few months?) But we don't really get any answers,and then he tells Jeff that he will see him in a year!!! I can tell Jeff is confused ,but I can also tell he wants to trust that his doctor is telling him what is right for him. As we leave I tell him not to worry, that he knows what a REAL DVT and PE feels like and we would go to the ER if he feels that way again. A normal d-dimer range is below 500, Jeff's was in the 1500's when he was in the ICU. Last month is was 640, today it was 677. So while it doesn't seem terribly alarming, I feel like waiting a year to recheck it or follow up with the hematologist is not appropriate. Jeff is looking into a second opinion just to make sure that there is nothing else we need to be doing as far as his blood disorder. He has been and will continued to be followed by his cardiologist and interventional radiology is taking out his filter on July 7th. The hematologist also told us today that only 60% of filters are able to be removed. I hadn't heard that before today. I want that filter out. I know I will be anxious on the day it is removed because they said it could take anywhere from 20 minutes to 2 hours. I am praying that sucker pops right out. I am praying this appointment doesn't increase our anxiety. I hate that I always see the worst case scenarios in my work. It makes me consider all of the worst case scenarios for myself and those I love. But, as I told a friend last week that was waiting on some tests, "Don't borrow trouble." I know worry and anxiety isn't from God. I know that Satan loves it when I tell myself a story of woe and worst case scenarios. I am praying to stand firm in the truth of what God says, to not be anxious about anything but to pray and turn it over to Him. We appreciate all of the prayers we can get! Thanks for reading!
Posted by Susan at 4:09 PM