Attention Dr. Wonderful: I need you to come to rescue. This is my damsel in distress call. I need help with these C2 gene problem. Please call.

Tara Leigh

Begin forwarded message:

From: teddyleigh
Date: September 7, 2016 at 12:15:25 AM PDT
To: Ryan
Subject: Re: How do I get the Exome data?

Ryan,

Thank you very much for trying to get in touch with the director about the exome data…I’m sure there are delicate politics involved, and I really appreciate that you’re trying…

In terms of another lab, Cincinnati I just found on the web, I’m not sure if they would be helpful or not. Noah did see an immunologist up at university of San Francisco (Dr. Jennifer Peck), who recommended up our case to the genetics department there for further review…it might be worth it to take a drive up there again…maybe they would help (?)

I’m not sure what’s going on with UCLA…of all the institutions I’ve been to, I have to say UCLA is the worst and I’m not sure why they have such a great reputation…when I met immunologists on the east coast, all of them didn’t have too many nice things to say about ucla (particularly for immunology),

but around here in Los Angeles UCLA is the big cheese’ and the arrogance (and frustration) of dealing with some of those people never ceases to amaze me. I feel very lucky to have a very nice immunologist, who is my local ‘go to’ person, who is connected to UCLA, but other than her it’s been extremely difficult to deal with people there…

(For example, today I called UCLA pediatrics for the *third* time to try and schedule an appointment for Noah with Dr. Derek Wong, and I got another brick wall…this time the guy who answered the phone said I didn’t have the correct referral from Noah’s pediatrician, but that’s bullshit cuz the last time I called they had the referral, they said I could only schedule if I have this exome data, now this guy today said I didn’t have the right referral, and someone else was going to call me tomorrow–it just never ends–)

I know you’re super busy, so I really really appreciate your time…a scientist has a lot more clout and respect than a patient, so it really means the world to me that you’re trying–

I asked my doctor to try and find me a doctor who some power in Los Angeles to help me work out this C2 gene problem, but unfortunately I guess no one is interested. I really need a doctor with some power to make phone calls…)

(And…my ultrasound last week shows my lymph node in my sublingual gland is *still* swollen, even though I’m on two IV antibiotics (Vancomycin and Clindamycin), so it looks like I’m definitely going to have to do this third surgery at some point, probably sooner than later…it just never ends 😦

Of all the people I’ve spoken with over the years, I feel like you’re one of the few people who understands how difficult it is to do anything and be chronically ill at the same time…some days I’m lucky if I can just get out of bed, let alone fight all of these battles…

But,

alas,

the fight must go on…I don’t want Noah’s life to be ruined like mine, and even if we can’t solve it right now, if we can confirm the answer than maybe one day…one day…some can fix it…

I’m sorry I’m venting, lol…i just wanted to kick the wall after I spoke to the receptionist at UCLA this afternoon…such arrogance…we need an army 🙂

Warmly,
Tara

On Sep 6, 2016, at 9:58 PM, Ryan wrote:

Hi Tara – I apologize of the delay. I just sent a second message to my former director and hope he responds. If not, we should find another lab to more forward with.

Ryan

On Tue, Aug 30, 2016 at 8:36 PM, <teddyleigh> wrote:

No worries…I know how busy you are, and I’m very very grateful for when you can squeeze me in–

I’m very excited about this C2 gene testing, and I really would like to find a place to send my blood. My main doctor, Jeffrey Sherman, is willing to write the order, we just have to figure out how to write the order and where to send the blood.

UCLA has been a big pain over the years and not very helpful (though I’m hoping that will change)…I actually had an immunologist at UCLA once tell me I was too healthy to have a serious disorder, and I told him I didn’t know healthy people could have thousands of pages of medical records (what a jerk). Anyhow…I just look so healthy on the surface, I guess it’s hard for people to understand sometimes…

Thanks again for everything. I agree I think this C2 gene might be it. I’m excited to test it.

Warmly,
Tara

> On Aug 30, 2016, at 4:21 PM, Ryan wrote:
>
> Hi Tara – I haven’t had a chance to follow up on your email. I’m sorry.
>
> Let me reach out to CHOP again about this.
>
> Ryan
>
> Please excuse any typos — Sent from my iPhone
>
>> On Aug 30, 2016, at 7:08 PM, teddyleigh wrote:
>>
>>
>> Ryan,
>>
>> I hate to bother you, but UCLA genetics is requesting the exome data that was done–do you know who I need to contact to get all of that data?
>>
>> Should I ask Noah’s pediatrician’s office (Dr. Crosby) to contact CHOP? Who should they call?
>>
>> I hope your new job is good well 🙂
>>
>> Warmly,
>> Tara