following up regarding CHOP tests

It’s a very nice feeling that they haven’t forgotten about me…it’s difficult to figure out the right combination of following up without being too annoying…

Even after all of these years of being sick, I don’t think I’ve found the right balance. Now I just err on the side of not contacting. I just sit back and hope that the people who said they’d help me haven’t forgotten.

And a few months later, without my prompting, I get a nice email from RG 🙂

I’m happy RG hasn’t forgotten me–

***

RG,

Thanks for getting back to me–I’m sorry to hear about the delay of the testing, but I’m very grateful for any help at all–I completely understand that things can come up sometimes–I appreciate beyond words that you’re being diligent about following through 🙂

Did you ever hear anything about shipping blood from Canada? Since my father did agree to send some blood, ideally I’d like to do that if we still can–

Overall, I’m doing ok these days…some days, worse than others. Yesterday, I was so tired I just could not get out of bed, even though I had a doctor’s appointment…I think I slept almost 24 hours in a row. That just happens sometimes.

This morning I started a new medication, Immunovir, which is some kind of immune modulator–I don’t really understand what it is, but it’s supposed to help with t-cells and natural killer cells. I guess its been available in Canada since 1971, and some people swears by it. I figure I haven’t got anything to lose–I might as well try it.

(If anything interesting happens with my t cells and nk cell blood results, I’ll let you know–I’m going to check all those numbers again after i’ve been on this for a few weeks–)

I can’t remember how much I’ve told you about my case, but i’ve been on antibiotics for a long time…too long, in fact. I’ve actually cultured positive for VRE and VRSA, so clearly I’m developing some big time resistance to antibiotics now (which isn’t surprising). Without trying to sound like a drama queen, but these cultures remind I am running out of time…how much time, I don’t know, but clearly I need to find a way to help boost my immune system before I run out of antibiotics–

(I’m hoping to get approved for IVIG, which has helped me a lot over the years. There have been some medical papers written regarding IVIG therapy possibly helping those with a NK deficiency, but because my Ig levels are normal it’s very difficult to get insurance to pay for it (though you’d think they would finally realize it’d be much cheaper to give me IVIG than my keep being hospitalized, these antibiotics, etc–not only would IVIG be good for me, it’d be cheaper for them in the long run too–)

Maybe I need an interferon, or maybe even this Immunovir will help? Maybe…

Thanks again for everything, and thank you very much for thinking of me. Please let me know if there is anything else I can do to help.

Warmly,
Teddy

On Apr 2, 2012, at 3:39 PM, RG wrote:

> Hi Teddy – I wanted to follow up with you and let you know that we received the blood samples and processed them. I’m still waiting for the data to be generated. There were some issues out of my control over here. I was told I should have it back shortly. I hope you and David are doing well. >
> RG

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 who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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