Dr. Kaul gave me your information :)

I just wrote this email to an immunologist in Toronto…it looks like his office is in the heart of downtown Toronto, which I hope would be a nice place to live.

Wherever I live, it would have to be close to the doctor who agreed to take my case…its very difficult for me to get around a lot when I’m crashing…

Of course, if I’m in Canada and I’m on IVIG on a regular basis, I may not need to be so desperate to see doctors all the time. I might actually be able to function more, like a normal person…that would be amazing.

Begin forwarded message:

From: tl_kittle
Date: June 8, 2013 1:49:17 AM PDT
To: Dr. B at St. Michael’s Hospital
Subject: Dr. Kaul gave me your information ๐Ÿ™‚

Dear Dr. B,

I’m writing in the hopes of being able to set up an appointment with you later in the week of Aug 12, or the following week if it is possible.

I am a Canadian with chronic health problems who lives in the United States, and due to the financial strain these problems cost I am considering moving back to Canada…very difficult decision, considering I left Canada when I was 11…

I was referred to you due to the complexity of my issues…I’ve had countless infections over the years without an elevated WBC or fever.

My main concern is making sure that I have access to IVIG and antibiotic therapy if I were to move back to Canada, since that is the main reason I’m on the planet ๐Ÿ™‚

I hate to dump all of this on you, but I’m not sure where else to turn to…I’ve been diagnosed with the following:

* primary immune deficiency
* cvid
* impaired response to the pneumococcal vaccine (but normal response to other vaccines)
* positive ANA
* countless elevated sed rates and elevated d-dimers
* low t cells
* low nk cells
* abnormal electrical activity in the temporal lobe
* brain lesions similar to MS
* bacteremia without a fever or elevated wcb, corney bacterium and entercoccus
* as a child, lots of sinus infections, bronchitis, pneumonia
* surgeries

I tend to have a very atypical presentation…I look very healthy, and then I culture positive for something or the doctors find something doing an exploratory surgery.

This is very scary for most doctors…very difficult for them, which is why I mostly just see physicians who have known me for a long time–

I would love to meet with you to hear about my options, for what I could realistically expect (or not expect) from the Canadian healthcare system. As medical care is my lifeline to the planet, I just need to make sure everything is ok before I leave…

Oh, the war stories I could share with you about people with PID in the U.S…I’m sure you’ve heard many of them, but the U.S. is truly a bad place for people with serious health problems unless you’re unlimitedly wealthy. I could live like a queen for what my son’s godfather spends on my healthcare here in the states…or at least, that’s what I’m hoping ๐Ÿ™‚

I hope you are well,

Warmly,
Tara

323-xxx-xxxx

Local immunologist: Dr. Rita Kachru (she’s very friendly and helpful–she explains my case better than I do ๐Ÿ™‚

I attached recent bloodwork…I have thousands of pages of medical records, including immunology blood tests done at various places, I just attached below what I did the other day at Cedars (here in Los Angeles) as an example. 6.5 wbc is actually high for me, but I’m really sick right now. That’s probably why it’s 6.5–)

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About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends whoโ€™ve supported me and for access to literally millions of dollars worth of medical care. Iโ€™m not the bubble child, Iโ€™m somewhere in between.
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