My Melmoirs

     Since the pain around both of my clots did not subside over the weekend, I emailed my clot doc early this morning and not only did she (finally) get back to me, she spent two full hours with me on a day when she wasn't even seeing patients.  Strangely enough, when we're in a room together, all of my anger flies out the door and we totally reconnect and communicate so well.  If only I had her cell on speed dial and was her one & only patient ;)        There was a lot of information packed into the two hours and medical terminology that I'm not even familiar with...yet still, no answers.  The good  great news is that she was able to rule out the worst-case scenarios.  Unfortunately I can't tell you the names of what she was worried about because that was some of the terminology that flew over my head, but one of them was an adverse reaction to lovenox where it makes the clots grow more.  She also had an EKG "rhyt...

     Well, what I had feared came to fruition last night.  I found myself waiting for hours in Brigham & Women's ER for nothing and still do not have a single answer.  Let me take you back to the beginning of my day yesterday...      I went to my local hospital first thing yesterday morning for my glucose test.  After the second blood draw, I don't think the tech put the bandage on tightly enough because by the time I got home, a large part of my sleeve was soaked with blood.  I suppose this is to be expected on the lovenox, it's just never happened to me before.  Cut to a few hours later, I began experiencing acute, intense pain shooting down my left arm (the arm with the bigger clot and also the arm used for the blood draw.)  This pain was different from the 'clot pain' I've been having - especially in it's acuteness and the way it was shooting down my entire arm.  But the place it's originating from is exactly whe...

     Yesterday I went for a bilateral (both sides) ultrasound for my blood clots and to see my hematologist.  I was super anxious heading into the U/S appt. because I have been experiencing quite a bit of 'clot pain' on my left side for a little over one week now.  Usually I have a very high pain tolerance and can take it all in stride, but clot pain for me is a little different because it is so out of my control and it's nerve racking because we're running out of ways to counteract it...and did I mention that they both lead up to my jugulars?        I had a new U/S tech this time and I could tell right out of the gate that she was not going to offer me much info on what she was seeing.  Despite my best efforts to butter her up and solicit some results, she remained evasive.  The reading physician was also different from my usual, which leaves a small margin for interpretation differences.  The final report was given to...

     First things first:  I had my CF check-up yesterday and it went very well.  My PFT's were exactly the same as they were in October, so alternating the Tobi & Cayston (CF-specific inhaled antibiotics) is succeeding in keeping me afloat.  I am especially grateful that I dodged two recent bullets:  Myles' nasty cold and the awful stomach bug I had last weekend.  I feel like I can breathe a sigh of relief (famous last words, right?)        Referring back to my last post about the prednisone, what was supposed to be a short two-week taper turned into a indefinite course of treatment.  What happened was that 5mg helped my symptoms a lot, but the first day that I decreased the dose my symptoms began to flare.  So my vascular specialist suggested I remain on 5mg until she speaks to the new rheumatologist (which I've realized won't happen until we're in crisis mode.)  At first my CF doc was not too keen on the...