Since I know how frustrating it has been for ME to not get an update, I figured I’d send one out to all of you.
I went to Dr. D’s office this morning so the NP could check my incision and so I could show him my uvula (you know, the thing that hangs down in the back of your throat? Mine’s swollen and yucky looking.). After he looked over everything, N and I pretty much poured our guts out about how frustrated we have been with not knowing anything and no one seeming to bother keeping us in the loop. He said he completely understood and then paged Dr. D so that he could give us any information he could. This is what he came back with:
On Wed. Dr. D decided he wanted a little more data before taking me back into surgery on Thursday. He contacted the Mayo Clinic to see if they had some pictures that could show more precisely where my blood vessels are. They apparently did not have that information. So now he is working with Dr. P (my cardiologist), who has put him in contact with an EP at Children’s here in Dallas, Dr. S. So now Dr. D and Dr. S are talking and trying to figure out what the best plan of action for me is… No one knows when this will be decided.
I went ahead and decided to go in to work for the second half of the day. I figured it would help keep my mind off of things and I had a bunch of stuff I needed to get done anyway. Not long after I arrived I got paged over the loud speaker to come to the office. Having no clue why they would call me down, I wandered in. Turns out Dr. P was on the phone for me! I had not called her, but she felt like it was important to let me know what was going on so far (novel concept!).
She gave me almost the same exact information I’d gotten earlier in the day, but she did add a little more. She said that Dr. S is trying to figure out if the benefit of the bi-ventricular pacing outweighs the risks of putting me through yet another surgery. When Dr. P pointed out that my heart function has improved since getting the ICD he said “but is that because of the device, or because of the meds?” Well, I can honestly say I believe it’s the ICD. I had been on the meds for quite some time with no improvement. But shortly after getting the ICD there was significant improvement. To me, there is no question. But this is apparently where the doctors are now.
So I still know nothing, but at least I know who is talking about me behind my back and what the hold up is. I don’t know when I will know anything, but I’m hoping we’ll be more informed than we have been up to this point. I seriously doubt I’ll find out anything over the weekend. It would be nice, but I won’t hold my breath. I’ll let you know if I turn out to be wrong.
On surrogacy news, everything is still set to go for starting stims on Sunday! Woo hoo! Getting closer! 😀