it was too good to be true- a rant by lulu

[Lulu]

hey y'all

this is an update to my post the other day about not being able to stay hydrated......i'm still not able to stay hydrated, or maybe i AM hydrated & i just feel wonky....my own word for POTSy....but IV fluids really help me--the near-syncopal feeling goes away, i'm not shaky, the palpitations decrease, i have better thermoregulation, i just feel better. i was thrilled to have the ER doc i saw wednesday give me a temporary standing order for fluids til i can see my PCP. (still no word from Dr. Grubb's office) at ER, got 1 litre of fluids and felt better. no reason they can find why i should need them (all my evaluations were "normal" except i felt like crud before & felt better after fluids)....i'm to follow up w/ my doc. ok, fine. got standing orders, thought this would be great to get me thru.

but today i tested that theory.....went to hospital to get fluids, was sent to the floor, where a very nice but confused nurse got a good line in and gave me blankets and juice. it was wonderful! no waiting in the ER and trying to answer a bunch of questions that just make the questioner look at me like i have 14 heads. i even got a warm blanket and a slow drip, which is best for me.

and then..... her supervisor came in and said if i came back i'd have to go thru the ER and she had called so and so on call and so & so the ER supervisor and they agreed 100%>>>i have to go through the ER & they had the ER doc's orders revoked. sigh. the nurse supervisor also asked me "why do you think you need fluids?" double sigh. i had no response beyond they help me feel better. i felt accused and blamed. and like i was a drug seeker or something. oh, yeah, i can't get enough normal saline or figure out how to make my life more complicated, so i keep coming to the hospital. it's my favorite thing in the world. NOT! i realize this is probably "CYA" on their part, but i felt really bad (emotionally) when i left. i still do. (can't you tell? LOL)

the truth is i just can't drink enough in my waking hours to feel right. i'm just so tired of explaining myself everytime. i'm so frustrated, too. those fluids wednesday night got me through two days of nursing clinicals and a four hour work shift. yeah, i was tired as heck, but i made it! i KNOW i need the IV therapy, i don't know why and i'm now on a first name basis with the ER nurses.

i'm just venting, i hope you'll pardon this. i know you all have been there, in some shape or form. i truly believe it's my dysautonomia triggering these episodes & the fluids help. i just wish i could do a Vulcan Mind Meld with these folks, especially when i'm not feeling well, all POTSy and wonky and tired. it's so tiring to explain. and i'll in all likelihood need at least one more "infusion" before wednesday when i see my own doc.

i have begun each day since that "can't stay hydrated post" with pedialyte, more in the afternoon and 16 oz of water each hour. i wear a watch that vibrates on the hour and i go drink 2 glasses of water. i have to stop about 8-9 pm or i have to stay up all night with bathroom trips. i don't know what else i can do but wait. after 8 years of dysautonomia i should be used to this, right? having to wait, getting poked, having doctors tell me they don't know what's wrong or that nothing is wrong or worse, ask ME why i "have so many things wrong with me."

i just can't give up. i feel like i'm better than i've been, but still have so far to go. sorry for the self-pity rant. i'm on the edge of despairing. i'm glad you all are out there. and while i really am not happy that some of us are having bad days today or the past few days, it helps to know i'm not really alone.

what do you do when the doctors (or nurses) won't listen to what you need and seem to thwart you at every turn? i'm feeling outmaneuvered. all ideas welcome. my biggest fear is they will deny me fluids if i go again to the ER. (it will be my 4th time in as many weeks, 3 this week alone.) could they do that? my own doc told me to go to the ER.

peace and light,

a grumpy, but hanging in there lulu

[MightyMouse]

Lulu, rather than try getting fluids at the hospital, you should be seen by your doctor. If you both feel it will help you (as you said, you've not been able to drink enough fluid during the day, which should be reason enough, no further explanation necessary for nosey nurses), then you can get set up to go for IV infusion at an "infusion center", or possibly even get the services at home via home health services. If it's something you'd be getting just as needed, then home health might not be a good match b/c you'd have to have a regular schedule and typically can't just call and say "now would be a good time for an iv".

Good luck! Also, if you're a pt of Dr. Grubb's and you're not getting a reply, consider sending your question via fax.

Feel better.

[Ernie]

Hi,

Did you try DDAVP? It helps stop the urination and keep your fluids in your body.

[Lulu]

Thanks, Ernie & MM for your suggestions--

i feel better in the light of day today. (and cuz i got a L of fluids last night) boy, i wrote a whole lot last night! i wasn't in a real good place. i am still afraid they won't give me fluids at the ER for some reason, even tho my own doc has told me to do it. and it's my only shot to make it thru til i see my PCP wednesday. do you think they would turn me away at the ER?

unfortunately, we don't have IV centers in my small town (outside of a specialty clinic in the hospital), but maybe they have such a place in a near-by bigger city? i'll ask my PCP. i will definitely ask my doc about geting set up at outpatient for "REAL" through him (i think they didn't want to do what the ER doc said...some politics or something weird was going on) or the doing my own at home if i can get a port-a-cath (i know how to do central lines & am not sqeamish about doing my own needles). I don't know if the DDAVP is an option because if i retain the urine, i get kidney and bladder stones. i'm not sure what it would do to me. but i'll surely ask my PCP & urologist what they think.

i have noticed a somewhat decrease in the "output" tho i'm still drinking the same or more, and i still feel weird when i'm "down a quart." i expect dr. grubb will have some ideas for me. i did get a call that my msg was in his/beverly inbox and someone would be getting with me. so he has the message, will just have to wait and see, and remember to breathe. the waiting and wondering and worrying i think is even harder then POTS/NCS itself sometimes. does anyone else feel this way?????

whose sig file reads "today is the tomorrow i worried about yesterday and all is well?" that is brilliant for me today. wise words.

love and light,

a far more stable lulu, but still worried lulu

[Laura]

Hi Lulu, I am sure that you likely are, but thought I would ask anyway.... with as much fluid intake as you are having, are you being very sure to take in a lot of salt as well so that you retain the fluid? If you don't have enough salt, you'll end up more dehydrated despite the large fluid intake as you'll simply be voiding it out. Just thought I would check..... Laura

[Poohbear]

If I were in your shoes I would go back to the ER explain that your oders had been revoked by the nurse upstairs and you don't understand why and ask they be re-instated.

Another avenue that might help is to contact the hospital social worker or quality review. You could call the hospital switchboard and ask who you need to direct a complaint to. When you get that person, explain that you have a condition that most Dr's and staff are not familiar with but that you do need IV fluids, your order was revoked & you need help getting it re-instated. If they ask why you need IV, I would tell them that the amount of fluid you drink is not working & that this may be due to the fact that with dysautonomia it is also common for hypovolemia to be an issue.

I agree with Laura on the salt issue too.

[Jenn202]

LuLu - I have been through what you are going through for years and years....

I finally found my POTS Dr, and then seeing Dr Grubb to confirm last year, they helped me get IV fluids in my home through a Home infusion company.

Boy I know the feeling..they make you feel like you LOVE to sit in hospitals and get a needle stuck in your arm for IV fluids, like you are some IV junkie!!!! It makes me so incredibly furious and if you look up this topic you will see I have vented about this many times...

Its ridiculous.... Dr's give out toxic, damaging drugs all the time without thinking but to get an order for some stupid sodium chloride or lactated ringers is like we're looking for cocaine!!

I;m not sure if you have a POTS Dr or an understanding GP? I would go through them..... I wish everyone could see dr Grubb b.c it is such confirmation that we are not crazy....and his write up is so validating when I bring it with me to appts.....

Anyway, I hope one of your Dr's can hlep you get this set up at home...

BTW: You have been checked for all possiblities such as diabeties insipidus right?

Also make sure to add salt to your liquids.. I use celtic sea salt rather then processed Sodium chloride...

Celtic contains lots of good minerals your body needs... Also Electromix By Alacer has all the esential electrolites without the sugar and other additived that they put in Gatorade/pedialtie and all the other store bought stuff...

You can get Electromix at your health food store.....

I hope you feel better, Keep us updated!

[Lulu]

again, my thanks for the caring advice. i don't salt load due to extreme hypertension and Dr. Grubb doesn't recommend it. plus it's damaging to my kidneys, which have been thru the wringer with 15+ stones. i do like the idea of talking to a quality review person and laying it down for them, which may gain me nothing but the satisfaction that someone is hearing how unhappy i am about this.

the orders of the ER doc were revoked by the head of ER, so that's a dead end. i can guess why: CYA. they want to have me do a bunch of tests, draw blood, pee in a cup, run an EKG, (Ie. be seen in ER so they can EVALUATE me) all of which have come back normal every single time--it's not something these minor-leaguers are gonna figure out or understand, so they just badger me into going in through the ER and asking questions i can't answer again. if my own doc had actually ordered outpt fluids instead of "go to the ER as needed." we wouldn't have a problem, but he didn't and hence the politics of a small town hospital.

what all this boils down to is i'll have another trip to the ER--tomorrow probably--and just go through the whole thing til i see my doc on wednesday, who should be able to tell me whether i can get a standing order outpt or home supplies or a port a cath. i'm sure he'lll want me to go through a bunch of tests...which is Ok. i'm curious myself as to why now? this is happening. but i want to make sure i get symptom relief and can stay in school. there's worse things in this world than what i'm facing, i know in the big picture this isn't even ablip. but it my life and health and happiness & i just don't want to get turned away for requesting fluids. could that happen? does anybody know? it's not like i'm asking for morphine! i just want to get some relief. ha ha my drug of choice? Normal Saline!! LOL

i hope i get a call from Dr. Grubb's office before i see my PCP. His input would go along way toward helping this along. I'm compiling some s/s, research, recommendations, questions and ideas to talk to my PCP about, including getting tested for DM or DI. my next appt with Beverlly is in SEPT. i have to get some resolution or limp along procedure in hand before then. i'm sure once i talk to my PCP who is way cool and hear from Grubb's we'll be off to see the wizard and having a grand ole time getting this figured out.

thanks again for more help. you all are awesome! may you be blessed!

Love and light,

Lulu

[MightyMouse]

Lulu, yes, my understanding is they could refuse treatment at the ER if they feel there is no need for the fluids.

[dizzygirl]

LuLu---girl I SOOOOO understadn what you are going thru!! w/ the IV stuff.. and the need for needing am IV...I right now amd going into round 10 fighting w/ the insurnace company mostly.. about my needing IV fluids at home.. as well I need my docs to understand thatI need this.. Dr. grubb supports the IV need...yet I'm still having problems!! GRRRRRRRRRR--the staff who have come to my home and to give me my one and only home IV infusion just could not understand why I needed fluids.. and couldnt drink enough to hydrate...and where full of snide remarks that got my blood boiling!!.. My bf actually went arond with them.. they were dumb enough to leave turniket on my arm for about 20 minutes and had an IV in and were wondering why it wasnt working.. I looked an notice it on my arm.. and I'm like I think that this is your culprit.. as I was laying there on the verge of fainting.. and having chest pain!! my bf was PO!

sorry for my mini vent there..

But yes. can you speak with that Er doc who ordered the IV till you get in again??

I understand you frustration dear!! I hope tht you can get things worked out!! something so simple that offers so much relife should not have to be fought for like this!!its a crying shame!! I agree w/ Jenn about the whole drug verse. fluid thing.. oh so true!!

[MightyMouse]

I was asked privately if I was sure about my statement that the ER does NOT have to follow some other doctor's suggestions:

Again, it's up to the doctor who sees you in the ER whether or not they give you IV fluids, or some other treatment, or no treatment at all. The issue here is that the doctor who wrote the orders for you may not be available to see you at the time you show up at the ER--what if, just once, the fluids really *weren't* in your best interest? What if you needed something different--and your regular doctor isn't the one there with you? That's what the ER doctor's job is, like it or not. Granted, I'm not saying that ER docs are always right--far from it. Just that it's their call to make, right or wrong.

I know that you may feel you need the fluids--and you may actually need them... but ER's are not set up to deal with chronic, less life threatening care on a regular basis. You're considered a much lower priority unless you present with symptoms that increase your triage rank to an emergency--such as impaired breathing/o2 saturation, serious arrythmias (most of us with POTS / NCS have more of nuissance arrythmias as opposed to dangerous arrythmias that can indicate a major vascular incident has happened, is happening, or is about to happen), allergic reaction such as anaphylaxis, high fever, seizures, major trauma, etc.

As I said in my prior post, you'd have better luck getting long term assistance via an infusion center or home health care, as the type of service you're asking about is exactly what they are set up to do.

Nina

[Laura]

Hey Lulu,

If you are not able to salt load you may actually have to slow down on the fluid intake in order for your body to retain it and resist dumping your fluids. Maybe you've already discussed with your doctor what ammount of daily fluids are needed for you...too much fluids may not be good for your kidneys either. I would be concerned that with the ammount of fluids you are taking in - 2 cups every hour - that you'd end up much more dehydrated as your body would be dumping. I hope you get some answers from Dr. Grubb or your PCP soon!

[Lulu]

laura,

i have been thinking about that too, the days i back off a bit on the intake i feel a teensy better, but ultimately end up crashing. i double my cymbalta today and it's been the worse yet. does anyone else have probs w/ that med?

on my way to ER for more fluids to see if it helps. thank you all for your concern.

love and light,

lulu