I had a follow-up with a new specialist yesterday. He explained in a little more detail exactly what happens with clots and recovery. He told me that I am NOT a walking time bomb and should not feel that way. He said that most people who die from a clot, die within the first 30 minutes, so the fact that I made it to the hospital meant that I already had survived the clots I had. He said that my life expectancy is not shortened by this and that although my weight is a factor, several things have to come together for this to happen. It’s not about my weight alone, according to him.

He told me that the clots in the lungs dissolve quickly because there is much more and better circulation there. The ones in the legs take more time. I have noticed a dramatic improvement in my breathing over the last couple of days. I’m still a little more out of breath than usual, but not anywhere near where I was last week. Because clots in the legs can take a lot of time to dissolve, I now have a pair of compression stockings on order! Lovely, I’m sure, but necessary. I went for the “stylish” black ones over the “fake beige” ones. Just in time for summer. I will have to wear them from the time I wake up until the time I go to bed for 3 months. I will have another echocardiogram and ultrasound of my legs in three months also, and a follow-up with this specialist again. I cannot have the cochlear implant surgery until he clears me for it, hopefully at that appointment. I told him about an episode I had 3 years ago where I also had an elevated D dimer and was checked for clots, but they didn’t find any back then. My hearing specialist sent me to a hematologist at that time to investigate if there was a chance that something was going on with my circulatory system that could have caused my hearing loss. That doctor basically said there were too many things that could elevate the D dimer to narrow it down and that the numbers would have been much more elevated if I had any sort of true clotting disorder. Nothing more was pursued at that time. I asked this doctor if this new episode might indicate anything along those lines. I’m not sure if my Autoimmune Inner Ear Disease diagnosis is what my hearing doctor considered the most likely thing (but it could still be something else) or if he is certain that’s what it is. The doctor I saw yesterday told me I need to fill in my hearing specialist on what has happened and asked to see the records from the previous hematologist and wanted to know if there was anything specific my hearing doctor thought might be a possibility in this realm. I was glad he was interested, although my hearing is already damaged to this point, I guess it would be nice to know and especially if there could be any other health implications for me.

I also asked about diet and exercise. It can be tricky to change your diet while on Coumadin. It can affect your dosing and the effectiveness, so if I make a change, I have to let my anticoagulation team know and they will work with me to try to adjust. As far as exercise goes, he told me that first I need a period of recovery (a couple of weeks or so) and then I can start working out. I have to keep my heart rate between 100-130 when exercising. He doesn’t want it to go over that. He said at first it won’t seem like I’m doing anything at all, but I need to be consistent and eventually it will take more to get my heart rate there… and more….and so on…. It is good for me to have a specific guideline like that to follow.

I have received several notes and also some ideas for diets to look at. I really appreciate the info. Please keep praying for me as I recover and as I try to finally find a way to lose some weight and get as healthy as I can. Please also keep in mind the situation with the insurance company for the cochlear implants.