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Heard back from Grubb's office


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well, this is pretty cool and also kinda scary.

Cool part: Beverly just called me here at home at 930p because she was concerned about my recent exacerbation and hadn't been able to get a hold of me before now. WOW!! :angry: i was really touched that she called and talked to me for half hour or so. i don't care when she calls....it was good to be in contact!! :angry:

the scary part: she wants me to double up on the cymbalta (which i'm not sure how that will help/hurt, but i'll try i guess, since i'm already on a low dose) and she's suggesting perhaps taking procrit shots 1/wk to build blood volume. i'm leery of adding another med. :D i'd almost rather have a central line put in than start another med. in fact, i would.

of course, she wants me to call friday after seeing my PCP and check my lab values again. and get checked for DM and DI. she doesn't recommend salt-loading and is concerned that the procrit will also raise my blood pressure. (and gulp, would they give me yet another med to combat that?) so, i know more now, but paradoxically, still have more questions. Beverly did think she'd have an opportunity to talk to Dr. Grubb about this by Friday. so maybe i'll get some more answers soon.

my husband posits that i'm getting the cart before the horse by focusing on the IV therapy. maybe i am, but i just have *this feeling* that that is what i need. and why shouldn't that intuition be reinforced by the fact that everytime i've gotten fluids, it has helped and i've been asymptomatic for 24-36 hours?

if i'm not positive for DM or DI, i don't understand the reluctance to prescribe IV therapy for me, especially when it is working and helps me feel better. i do realize there is a risk of infection, but i'm nurse in training and can certainly handle keeping a port sterile. i just don't want this to get any worse and i want something that works with my body & alleviates symptoms.

sorry to be like freaking obsessed with this lately, but my quality of life has gone from pretty normal to the pits inside of 8 weeks and i don't want to go back to where i was before, with no ability to do anything hardly. :angry: i've just got to believe there is a way. but i'm just scared. B)

thanks for listening,

peace to all of you,


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I know it is scary to try a new med especially for POTS patients because we are so sensitive. Procrit has changed my life so much for the better. It is a pain to get my blood drawn and give myself a shot every week, but it is totally worth it. I haven't passed out since I started it and my tachy is 90% better! I am so grateful for Dr. Grubb for putting me on that. In fact my biggest problem is my EDS whereas it used to be my POTS. I don't know but maybe they are reluctant about the central line because there is a greater risk of serious infection and insurance companies may not be as eager to cover it as other things. I haven't noticed a big increase in my BP, but it just doesn't drop as much when I sit and stand, but my BP is very resistant to increasing. I am on a lot of meds to raise my BP and the highest it has ever been is 103/60. Good luck!


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