I love good doctors.
Yes, I have had some trouble with some doctors in the past. There was the one who took a phone call on his cell phone from a friend right in the middle of discussing kidney functions with me. And there was an OB/GYN who told me flat out when I was pregnant with Claire that she had Spina Bifida. But really, I know that everyone has their off-days. I know sure do. So I don't expect doctors to be perfect. I just always seem to get my hopes up...maybe too high...that they will understand what we are dealing with. I want them to "speak my language."
I must say that the not-so-good doctors make me appreciate the really good ones even more. The good ones bring me to tears I'm so happy to have found them. They have helped us more than I can ever express. I'm so incredibly grateful for all the years of hard work they have put into research and study to help people like us.
I've been frustrated after many doctor visits not because of the doctors themselves, but because of the situation: I'm dealing with rare things they haven't dealt with before.
Claire, even after her little non-invasive surgery, is still having recurring UTIs (so incredibly sad, but true), and really, the doctor simply hasn't dealt with this much before...the success rate is usually so high. So we have to keep working on it, as frustrating as it is for both of us.
As for me, the mystery is still out as to why I would test positive for Lupus twice with no blatant symptoms. Although I'm not worried a bit about Lupus, per se, the doctors really recommended that I at least get to the bottom of why my kidneys aren't functioning properly. I know I need to follow up on that, but it just tends to get put on the back burner...everything else seems much more important.
And then there's Lucy. Her syndrome is rare enough that the first doctors we visited after we got her diagnosis had never had a patient with Bardet-Biedl before. When they came to meet Lucy and me in their offices for the first time most of them were clutching the basic BBS info. sheet from the Internet...the same one Dave and I had read when we got her diagnosis.
And that was so hard for me. I was looking for someone who knew more than I did. Someone who could tell me what to expect. Someone who knew how to really help us. Of course it's not their fault they didn't know what to tell me, or that all they could do was repeat the same information I had already read on the Internet. They had simply never dealt with it before.
Having a child with Bardet-Biedl can be very lonely sometimes...at least it was for me at first. No one knows really how to help. You can't know what to expect in the future for your child since every case is different. Even others dealing with the same syndrome have vastly varying takes on life and health concerns because each individual is affected so differently. And the doctors with various practices (endocrinology, nephrology, ophthalmology, genetics, pediatrics, radiology, audiology, orthopedics, etc.) don't necessarily work together, so you have to explain to one the same things another has told you (which sometimes gets all mixed up in the process) and you have to keep all the records straight so the same blood test doesn't get done more than once (this has happened a few times to us) and to enable each doctor to build on what the others have to contribute. It's been a tough, emotional, draining process.
So, you can only imagine how I felt when I finally got in touch a few months ago with some doctors at the National Institute of Health. I knew they were doing a study on kids with BBS and I wanted so much for Lucy to be involved...any help we can get is so promising.
The day I finally talked to one of the main genetic counselors there I felt like I'm sure I'd feel after having been lost in a foreign country and FINALLY finding someone who speaks English. This woman was speaking my language. And nothing feels so good after wading through so much medical mumbo jumbo that just didn't make sense for so long.
As this woman explained what, exactly, they are doing with this study and as I explained the tests and procedures I really hope Lucy will be able to have at some point it was like all the stars were aligning and all was right in the world. I understood her. She understood me. And we discovered that this was a good match.
I have been on cloud nine ever since. I'm so excited to meet a team of doctors who have studied and worked with numerous kids who have the same issues Lucy is facing. I'm so excited that those specialists will consult with each other...from so many different medical fields...specifically about my daughter. I'm so excited that we'll be able to provide Lucy's doctors here in the desert with some good, substantial information from the tests she will have there. And that from there we will have such a good foundation to build on.
We were supposed to head out there last week (the National Institute of Health is in Bethesda, Maryland). But because the dates they found for us happened to be right as school was starting, Lucy was getting potty trained, Dave's work was particularly crazy, and I had a huge stake primary function with 300 girls I needed to be home for, we had to put it off for a month or so. I was dying that we couldn't make it right then (I'm SO compulsive anyway), but we'll all survive another few weeks 'til they can align all the dates again.
All of this makes me (and Dave too) thankful all over again for good doctors. Those great ones we have found here in the desert, and the ones we will soon get to meet.
Yes, I love good doctors.