Would you believe I’m just now getting around to be able to blog something that happened this morning? Crazy day!
I got a call from Dr. G’s nurse coordinator today (Hannah’s genetics doctor). She wanted to know why we were switching to Dr. E. (the head of the genetics dept whose own nurse coordinator called me yesterday to set up an appointment and tell me Dr. E. is taking Hannah’s case now). Long story short, but there is definitely some politicking (?) going around up there regarding Hannah. From what I gathered, Dr. E. really doesn’t take on new cases anymore, but Hannah is such a unique case that she wanted to take it over firsthand from Dr. G.
I was SO uncomfortable during that conversation because wanted to know why we wanted to switch to Dr. E. and if we sought her out directly. I told her the only doctor we sought out was Dr. S., the Gaucher’s type 3 specialist up in Dallas. I didn’t even know who Dr. E. was before I was told we were being changed. When I explained that when Dr. E’s nurse coordinator called yesterday, she acted as if it was already done, so we just assumed it was right (since our Genzyme rep told us it was coming). Dr. G’s nurse coordinator kept saying how “Hannah is still Dr. G’s patient now” and how we need to choose between Dr. G. and Dr. E. for lead care of Hannah.
I guess I should feel positive that Hannah’s care is being “fought over” and not being neglected. But it really comes down to this — when given the option (and apparently I do have one), would I prefer someone who has studied Gaucher’s disease extensively along with other lysosomal storage diseases and is the director of genetics at this hospital or would I prefer to stay with the genetics doctor we have had all along who isn’t that familiar with it. Honestly, it seems pretty clear what to choose.
Fortunately, we are seeing Dr. S., the Gaucher’s type 3 specialist, up in Dallas on 2/12, so hopefully we will get a lot of insight into GD. I also plan to ask him about Dr. E. and see if she really is as “top notch” in this specialty as it seems on paper.
I seem to be full of comments lately. Originally I did not “mean” to comment on this one, but it has been irking me as I go about my day. So here I am so it doesn’t irk me out of some sleep that I so desperately want (a teething 7 month old and a busy 2.5 year old will do that to you, not that I’m complaining, I wouldn’t trade it for the world).
Anyhow, my comment.
1) I think it was completely unprofessional and out of line for the nurse to call you and put you on the spot like that. It shouldn’t have happened.
2) Weren’t you having some issues, or at least irritations with this Dr. G? Wasn’t he the one who had Hannah’s test results a couple of weeks before he told you? I completely understand why your ped. did not tell you (on top of that, it is many many practices/hospitals policies to NOT tell you any test results that were ordered by a different doctor under most circumstances. So it makes sense to me even if he did see the result on the computer that he didn’t say anything to you). On top of that, wasn’t Dr. G the one that you were wait for so you could schedule Hannah’s first infusion? I think I remember a post where you were quite frustrated and felt like she was being missed. If I was pressed as to why I was changing (or thinking about changing, or going for a 2nd opinion, all of these are your right and duty to yourself and Hannah, it isn’t like this is going away soon, you will work with this doctor for a long time).
Just my 2 thoughts. (For now)