Too too Tuesday

[kim22]

cagoldi I’m sorry, that must be so hard for her.

[kim22]

Closing set for noon on Friday! I can’t believe we are really doing this!

[mwhip]

Wow kim22! That's so soon!

chrisy01 did they say why they took those responsibilities away?

[Sunny41]

I'm at swim lessons catching up here

[lahdeedah]

Exciting! kim22 This is going so fast for you all. I’m on the “hurry up and wait” train. We don’t close until end of April.

[chrisy01]

mwhip and wedding they updated something in our system and since this job doesn’t list (because it’s still not 100% written yet) the system automatically removed it.

My current managers did nothing to prevent this from happening or help me resolve it.

I’m miserable

[chrisy01]

wedding I have a meeting tomorrow to discuss it

[lfig]

How exciting kim22!!

ETA: exciting about the closing...not the kidney stuff...boo to that!

cagoldi I’m sorry for your sister’s news. That’s so heartbreaking for her.

[Sunny41]

cagoldi that is tough to hear. I hope she finds peace with it.

kim22 Friday is so soon! And I'm really sorry any the kidney update

chrisy01 why did they take away responsibilities from you? ETA I see it was answered. They suck!

[lfig]

cagoldi how much do you know about IGG levels? S’s dr is out till next week but her results from her lab work came in and I’m curious about that being high. I will obviously follow up with him when he gets back in the office, just curious if you knew much about that since you seem to be our resident expert in this arena. Lol.

[Sunny41]

Something clicked in the last 2 weeks and E is rocking at swimming. I think he will be able to try pre-swim team next fall if he wants.

lfig SD is considering applying for a summer job at the Cypress Creek Refuge in So IL How flexible are you with hours for your summer people? She is with us every other weekend and she has a week trip in May plus we have a 4 day trip in June.

[lfig]

Mar 19, 2019 18:55:53 GMT -6 Sunny41 said:

Something clicked in the last 2 weeks and E is rocking at swimming. I think he will be able to try pre-swim team next fall if he wants.

lfig SD is considering applying for a summer job at the Cypress Creek Refuge in So IL How flexible are you with hours for your summer people? She is with us every other weekend and she has a week trip in May plus we have a 4 day trip in June.

Not very. Lol. I could barely take off for my sister’s wedding (where I was MOH) several years ago when I was working seasonal.

But every place is different, so if she gets an interview, just tell her to be upfront about her previous commitments. They may be more flexible with it.

[kim22]

Mar 19, 2019 17:49:27 GMT -6 lahdeedah said:

Exciting! kim22 This is going so fast for you all. I’m on the “hurry up and wait” train. We don’t close until end of April.

I think it’s different for us because the house we are buying is vacant and we don’t have another house to be out of. We used the fast closing to our benefit in the negotiations too. Also, I saw the mortgage stuff before and the monthly payment is quite a bit lower than I expected so that is exciting.

[Sunny41]

Mar 19, 2019 19:02:27 GMT -6 lfig said:

Mar 19, 2019 18:55:53 GMT -6 Sunny41 said:

Something clicked in the last 2 weeks and E is rocking at swimming. I think he will be able to try pre-swim team next fall if he wants.

lfig SD is considering applying for a summer job at the Cypress Creek Refuge in So IL How flexible are you with hours for your summer people? She is with us every other weekend and she has a week trip in May plus we have a 4 day trip in June.

Not very. Lol. I could barely take off for my sister’s wedding (where I was MOH) several years ago when I was working seasonal.

But every place is different, so if she gets an interview, just tell her to be upfront about her previous commitments. They may be more flexible with it.

That's how I see most jobs. I wish she would think about coming here for the summer. There are more opportunities. But maybe next year she will think about an art internship. She is also not an outdoor person so I thin she just heard about it and was hoping.

[lfig]

Mar 19, 2019 19:11:04 GMT -6 Sunny41 said:

Mar 19, 2019 19:02:27 GMT -6 lfig said:

Not very. Lol. I could barely take off for my sister’s wedding (where I was MOH) several years ago when I was working seasonal.

But every place is different, so if she gets an interview, just tell her to be upfront about her previous commitments. They may be more flexible with it.

That's how I see most jobs. I wish she would think about coming here for the summer. There are more opportunities. But maybe next year she will think about an art internship. She is also not an outdoor person so I thin she just heard about it and was hoping.

I’m not an outdoorsy person either. Lol! I don’t even really like camping, yet I manage 19 campgrounds.

[lahdeedah]

Mar 19, 2019 19:07:48 GMT -6 kim22 said:

Mar 19, 2019 17:49:27 GMT -6 lahdeedah said:

Exciting! kim22 This is going so fast for you all. I’m on the “hurry up and wait” train. We don’t close until end of April.

I think it’s different for us because the house we are buying is vacant and we don’t have another house to be out of. We used the fast closing to our benefit in the negotiations too. Also, I saw the mortgage stuff before and the monthly payment is quite a bit lower than I expected so that is exciting.

Gotcha!

[xolastunicornxo]

I’m so sorry for your sister cagoldi.

kim22 yay!!! Congrats!!3

[tallb]

That's so hard cagoldi, I'm sorry.

kim22 yikes about your kidney. Exciting about the house though!

[cagoldi]

That all happened so fast, kim22. Exciting!

lfig since they are infusing IG, I would expect her levels to be high. It would be a fair indication that the treatment is working, aside from your observations about her improvements.

Because they weren’t treating an underlying immunodeficiency, it sounds like they never bothered to get her baseline with the usual draw, administration of the pneumonia vaccine, then a redraw exactly a month later.

So my guess is her IG levels were near normal/normal to begin with, and the additional immunoglobulins you’re getting labs that are high.

Low levels are a concern, but higher levels really shouldn’t pose any kind of issue.

In the absence of any other weird values, I wouldn’t be concerned at all.

If anything, in a round about way, you kind of learned there is no PID so that’s pretty good!

[lfig]

Mar 20, 2019 8:41:26 GMT -6 cagoldi said:

That all happened so fast, kim22 . Exciting!

lfig since they are infusing IG, I would expect her levels to be high. It would be a fair indication that the treatment is working, aside from your observations about her improvements.

Because they weren’t treating an underlying immunodeficiency, it sounds like they never bothered to get her baseline with the usual draw, administration of the pneumonia vaccine, then a redraw exactly a month later.

So my guess is her IG levels were near normal/normal to begin with, and the additional immunoglobulins you’re getting labs that are high.

Low levels are a concern, but higher levels really shouldn’t pose any kind of issue.

In the absence of any other weird values, I wouldn’t be concerned at all.

If anything, in a round about way, you kind of learned there is no PID so that’s pretty good!

Thank you!!  That is what I was suspecting.  They did get a baseline which was like 550.  Then took it yesterday and it was 1405.  But I suspected that might be why.  I just wanted to make sure.  

[trtlcrzy]

I’m sorry for your sister cagoldi, that would be a hard pill to swallow.

kim22 !!! So soon!

[cagoldi]

Mar 20, 2019 8:49:15 GMT -6 lfig said:

Mar 20, 2019 8:41:26 GMT -6 cagoldi said:

That all happened so fast, kim22 . Exciting!

lfig since they are infusing IG, I would expect her levels to be high. It would be a fair indication that the treatment is working, aside from your observations about her improvements.

Because they weren’t treating an underlying immunodeficiency, it sounds like they never bothered to get her baseline with the usual draw, administration of the pneumonia vaccine, then a redraw exactly a month later.

So my guess is her IG levels were near normal/normal to begin with, and the additional immunoglobulins you’re getting labs that are high.

Low levels are a concern, but higher levels really shouldn’t pose any kind of issue.

In the absence of any other weird values, I wouldn’t be concerned at all.

If anything, in a round about way, you kind of learned there is no PID so that’s pretty good!

Thank you!!  That is what I was suspecting.  They did get a baseline which was like 550.  Then took it yesterday and it was 1405.  But I suspected that might be why.  I just wanted to make sure.  

I’m guessing that was her IGG total? Did they give you any breakdown by subclass?

[lfig]

Mar 20, 2019 8:55:56 GMT -6 cagoldi said:

Mar 20, 2019 8:49:15 GMT -6 lfig said:

Thank you!!  That is what I was suspecting.  They did get a baseline which was like 550.  Then took it yesterday and it was 1405.  But I suspected that might be why.  I just wanted to make sure.  

I’m guessing that was her IGG total? Did they give you any breakdown by subclass?

Nope, no breakdown.  Just that total.

[cagoldi]

Mar 20, 2019 9:02:31 GMT -6 lfig said:

Mar 20, 2019 8:55:56 GMT -6 cagoldi said:

I’m guessing that was her IGG total? Did they give you any breakdown by subclass?

Nope, no breakdown.  Just that total.

That’s a good value for total. 550 is a bit on the low side if that’s what she started with, so all the more reason to believe that you and your doctor chose the right course of action.

[lfig]

Mar 20, 2019 9:13:39 GMT -6 cagoldi said:

Mar 20, 2019 9:02:31 GMT -6 lfig said:

Nope, no breakdown.  Just that total.

That’s a good value for total. 550 is a bit on the low side if that’s what she started with, so all the more reason to believe that you and your doctor chose the right course of action.

Thanks!  This gives me peace of mind since the dr is out till next week!  The chart showed it was "high" for anything over 1280.  The numbers I gave you a few min ago were estimates based off memory.  Lol.  But I just looked it up...

On 1/4/19 it was 556
On 2/18/19 it was 578 (this was literally right before her first infusion)
Yesterday it was 1405

I appreciate your input!  I am still learning about all of this.  So now I am wondering if this improvement means that she has an auto immune issue that just isn't defined yet.  Seems like that was what the dr said was an option when trying to figure out the "why/what" of the hand issues and lack of use.

[tgrimes]

lfig H’s total is now in the low 400s. That’s after revaccinating with the prevnar. The immunologist said that is normal range for kids. Since she’s receiving infusions it makes sense that it has gone up.

[cagoldi]

Mar 20, 2019 9:27:54 GMT -6 lfig said:

Mar 20, 2019 9:13:39 GMT -6 cagoldi said:

That’s a good value for total. 550 is a bit on the low side if that’s what she started with, so all the more reason to believe that you and your doctor chose the right course of action.

Thanks!  This gives me peace of mind since the dr is out till next week!  The chart showed it was "high" for anything over 1280.  The numbers I gave you a few min ago were estimates based off memory.  Lol.  But I just looked it up...

On 1/4/19 it was 556
On 2/18/19 it was 578 (this was literally right before her first infusion)
Yesterday it was 1405

I appreciate your input!  I am still learning about all of this.  So now I am wondering if this improvement means that she has an auto immune issue that just isn't defined yet.  Seems like that was what the dr said was an option when trying to figure out the "why/what" of the hand issues and lack of use.

Autoimmune issue, perhaps, but a comorbidity of a primary immunodeficiency, I think that seems unlikely if one infusion was enough to raise her total that much.

Without doing the pneumonia vaccine at the same time as the initial draw, it’s not really possible to say for sure.