Getting Admitted To The Hospital

[SeattleRain]

I'm wondering how those in the US are able to get admitted to the hospital. Every time I go to the ER I already assume that unless by some miracle they find something, my vitals will be normal. Every time it's the same: "We'll get the results of this bloodwork then get you home, okay?".

I feel like I'm declining exponentially and need tests done yesterday. My next cardiologist appointment is on the 9th and that's after a cancellation opened that up for me.

Any suggestions would be appreciated. I hate spending $900 to go to the ER for nothing unless they're actually going to admit me and get me into cardiology for more tests...

Thanks in advance for the responses

[Katybug]

I have never been admitted to the hospital for any POTS related issues. What is it that you want them to do that requires admission to the hospital?

[bustersacc11]

I understand as the days go by when we feel things should be getting done but are not can be frustrating. Especially, when we feel so ill. We want to be treated and feel better. These scheduled appts cannot get here fast enough. Time goes so slow.

Only thing I can think of is if you have a primary care doctor, can you talk to them about your concerns. Maybe they can get you in a little quicker by having a physician talking to another physician about your case.

From my experience with ER's, they were not going to admit me unless they could not get my emergency issues stable or if stabilized required some sort of extended observation or treatment. Otherwise, I was discharged to follow up with my primary dr.

[SeattleRain]

Well it's been almost 11 months since my onset of symptoms. In the first 8 months, I had an echocardiogram, zio patch, holter monitor and ER blood work/xrays. The process has been painfully slow. I feel like I'm wasting time while doctors drag their feet. I feel like having a full cardiac work up - tests that I haven't had yet. I also feel like if we don't find anything there, I should have something like a full body MRA to look at the blood vessels in my legs. I hate how all my doctors tell me my heart's fine because of an echocardiogram I had almost a year ago. I feel like asking "And when does that test expire?"

[boymommy3]

I recently went to the ER and after telling the doc my symptoms and issues she said they were there to make sure I didn't have anything life threatening and that outside of that I would need a much larger workup with my GP.

So they did labs and an EKG and sent me on my way and because all of that was fine they sent me on my way.

I would tend to think though that if they thought your heart was enlarged they would have told you so. Did they say anything at all?

Sometimes docs offices have cancellation lists that they will put you on or if not, you can just call daily to see if they have had any cancellations. Maybe you could try something like that with your cardio.

I pray you get answers soon!

[Katybug]

I totally get what your frustration is with how slowly "the system " moves. All of my docs (except for my immunologist) are only good for 3 month follow ups, sometimes 6. Although I pick and choose my subjects and my docs, I do sometimes push for a more clearly defined plan and understanding of how the doctor sees things going. One of the things that makes our treatment hard is that most docs only change one thing at a time so we know if we are being helped or having side effects from the change. I also think that the docs don't always understand that a plan in their head doesn't help you understand how they are going to try to help you.

Are you concerned that POTS is a misdiagnosis or are you looking to find the root cause?

[SeattleRain]

Thank you for the responses.

The April 9th appt. with my cardiologist was from a cancellation so I'm getting in ASAP. Before it was May 15th.

My cardiologist and his partner that conducted the TTT said in my notes I do not fit the diagnostic criteria for POTS. That was incorrect and I ended up correcting him on it because I meet the diagnostic criteria. The problem is it's Hyperadergenic POTS and if that were the case, I would likely have really high standing NE levels. I just re-took the test so am awaiting the results but it's unlikely I'll have high levels.

Most of my symptoms seem unique to me and don't know of many other dysautonomia/POTS patients with the same symptoms as me. So, I would think it is a misdiagnosis and think they're jumping to conclusions way too prematurely. I think my symptoms warrant further testing and that's what I'm trying to push for.

[SeattleRain]

To further cement my point - we wanted to get a Total Blood Volume test done but the company that makes the test kits stopped making them weeks before I was to get tested.

The only place in the state that does the test no longer does it now, and this same company is the one that provides the kits to Mayo, Cleveland, etc - so I assume they don't have the kits either. SMH!

[khaarina]

I doubt the hospital will do anything. They will likely do only the necessary tests to make sure you are not going to die before you can get in to see your primary again, and those will probably not be the tests you are hoping to get. I say this from experience. I went to the ER twice. Once two years ago when all this started, I thought I was having a heart attack or stroke or something. They tested me (ekg, blood and urine, vitals, etc.) then sent me home with a referral to a psychologist. They thought I was having a panic attack. What a joke. The second was about 6 months later. I went to a different hospital this time. My heart rate was 180 and I was a mess. They did the same thing as before, only this time they gave me some Lorazapam to try to get my HR down and even though they couldn't get it below 100, they sent me home with a referral to my primary to get on thyroid meds. Believe me, the hospital docs won't care about what is going on with you or the cause. They just want to get you out of there.

In my experience, Cardiologists aren't usually so hard to get into quickly, but it may be different where you live. Have you considered finding another Cardiologist? I know it's a pain to do that, but it might be worth it, especially if you think he is not doing enough for you. Remember, they work for you. If his interest isn't your best interest, it may be time to demonstrate our greatest power: the ability to give them the boot.

[Altruism]

I get admitted from ER to Cardiology every time, all I have to do is stand up. My hr goes immediately above 140-150 and they panic. Try that. Overlake ER in Bellevue it is. No one helped me there, however..

See dr Thyerlei, she is awesome and so worth the long ride.

[Chaos]

Frankly, at least where I live, and I've heard of similar stories elsewhere...even if you get admitted to the hospital, the days of being able to be admitted for testing and getting a lot of workup done at one time are largely gone. Especially if it's something as vague as what most of us have. NOT that our symptoms aren't scary and disabling and needing attention. But the condition is just not mainstream enough that most docs are going to take us seriously.

When I was still working, I couldn't believe what they were sending patients home with, just to have them come back a couple days later, or sometimes the next day. Really was a revolving door many times. While I totally get your frustration, and have been there myself, it's not only the docs fault because the ER docs feel like their hands are tied as they can't get a lot of tests approved any more unless it's to prove you aren't going to die.

[misstraci]

I'm sorry Seattle. I wish someone would move the process for you more quickly. I've been to the ER about seven times over the past three years and each time, I am treated as if I am a hypochondriac. It's very belittling, Never been admitted, just given fluids and sent home feeling miserable as ever. you have no idea how much I dispise the medical community right now. I've had a basic work up by my GP when I first got sick which included lots of blood, an echo, ekg, mri and everyone who sees this thereafter says "you've had a good work up, there's nothing else we can really do". I am currently at a point where I am just beside myself. I'm angry and just feel like there is something there that someone is missing. I don't feel like I have 'just POTS', and if it is, something is causing it, but what...... I hope you are able to get more cardiac tests done. I was supposed to have a nuclear stress test but my insurance denied it. I just went to a new neurologist and had an eeg and called to get my results and she said they can't give them over the phone, long story short, i go in yesterday only to pay $40 for 15 minutes of his time for him to tell me the test was normal and reiterate I should drink plenty of fluids, ***. I am going in circles, everyone is disbelieving, and meanwhile, I feel like I'm dying and no one can see it, feel it, or understand what I'm going through. It's like being autistic and having this own little world that no one can touch/understand.

[Katybug]

Have you clearly expressed your concerns to your cardiologists? Do they know that you feel like you are misdiagnosed and that things are moving too slowly?

[Joann]

Seattlerain,

I understand what you mean when you say you feel like this is different. I have some symptoms that others don't and I don't have many of the symptoms that many here have. But then I have heard that POTS is different for everyone. So.. maybe it is. Then again, I it could be something more that is causing the POTS symptoms. Unfortunately, getting medical professionals to listen to us is very difficult. They have their preconceived ideas and often don't want to look out of the box.

I believe most hospitals will not admit you, and if they do they often just do the basic tests and let you go. I have been admitted three times, and each time I thought finally, now we will figure it out. That didn't happen, they would run whatever test they thought it could be, stablize my bp and send me home. Even when I told them I was not any better and wanted them to check more. Add to the fact that recently insurance has more stringent rules, and are covering less. I just had a ttt test denied because they said it was not medically needed! REALLY. Like we do these tests for fun. I was told I had to have proof I faint. Well, I have high bp, not low so I don't faint.

Anyways, I am not saying to not go to ER. If you feel like you need medical help immediately go! But otherwise, I think we all have to search for that one doctor who is willing to listen and think out of the box. And often we have to wait forever to see these doctors. I am still in awe of how Kris on this forum has gotten all of her doctor appts. in this past month!

I hope you feel better and hope you find a doctor to help you. I am still searching for that doctor and my answers.

[Birdlady]

One time my husband was admitted to the hospital from the ER because his HR would not come down and his TSH was very low. They thought he was in a thyroid storm. All in all, the week long hospital visit was worthless. They wasted both our time and money. You are better off talking to your GP or cardiologist and being assertive about testing you want.

[lissy]

Sorry for your frustration this is 5 years for me and a few ER visits prior to that....I've been to the ER hundreds of times and never admitted. I even discussed the issue with family docs, specialist and have been told if its not life threatening then there is no need to be admitted. So I'd say if you don't have very good insurance or cash and the ability to access a teaching or research hospital being admitted really serves no purpose Hospitals are meant for stabilizing and not discovering a chronic illnesses cause unless its plain and simple to find. The tests local hospitals perform are not going to finally find the answer, I've even been through almost every specialty dept for every body system.

I have been tested through Cleveland Clinic not *all tests performed I think there are 3 more to do... and from what I have heard the treatment is usually the same. I have low blood volume.

If at all comforting the BASIC blood work will show major life threatening issues and EKG's and echos are fairly accurate. I have started questioning having blood draws now because I know I have low blood volume and being tested unnecessarily is probably making that worse since I am not taking meds to treat it.

Doctors seem to have this way about doing things if you have a illness and theres a medication for it just take the med and live your life they really don't want to hear you say "Well ok I have this but WHY??? Its really messed up and I have argued, proved my points, cried, and anything else I thought would work but the fact is I'm sick and all I can do is pray, read as much information I can, and leave doctors that put me at a stand still if I can't get no further in my mission.

I, like many of you for some reason have this burning need to know WHY and want to find the root cause of this problem or we all would be over in the chat-chat section. This is not common in the general population most people go to their doctors get Dxed with something take a med if that don't work try some more and just go on......they don't search, question, worry constantly..I see it 1st hand with my own family I have a mom with heart failure shes in her 50's she has no desire to know whats causing it she takes her meds and just lives. I have a father completely falling apart he may weigh 130lbs always in pain ,trembles with fine motor skills, coughs constantly...and has tachy all the time, but ya know what he works everyday and won't go to the doctor. I have told them please find out what is causing your illness it may help me or my children but they won't.

Sorry to go on and on but maybe something is wrong in our brains we seem very different even with our thinking if a whole group of us got together in person I bet we could answer more medical questions than the average doctor.

So I will leave it at that I hope your upcoming appointment leads you to a comfort inside.

Lissy

[lejones1]

I have to agree with some others than the hospital may not be your best bet. ER docs are not really meant to be diagnosticians, they're meant to save lives in urgent situations. And it's rare for them to know anything about POTS and autonomic issues. The one time I've been to the hospital with this, the ER doc treated me like I was magical unicorn or something - "Oh wow, I've read about POTS but never actually seen it!" That's not really who you want to be running tests on you. Even if POTS isn't your issue, it sounds like whatever is going on is rare. If you get admitted to the hospital, you'll be seen by whoever happens to be in rotation that day - not someone who specializes in your issues.

Have you considered just making a ton of doctors appointment? Try to get in with multiple cardiologists, GPs, maybe a neurologist since you do have a POTS diagnosis (even if you think that's not your issue, maybe they could help you rule it out), until you find ones that you trust and are willing to pursue your case. I saw over 15 doctors before I was diagnosed with POTS (I rarely get palpitations so I never thought to see a cardiologist). My gynecologist, of all people, was the one who finally helped me get a diagnosis - she made me appointments with other doctors in her system and told them that even though all my tests thus far had been normal, she was convinced I wasn't making it up. It sounds like you haven't found any doctors you really trust and I think that's so important. I know it can be expensive and time-consuming to doctor shop, but I think it's a much better alternative than trying to go through the ER and worth it once you find the right person. Look for autonomic specialists but also just ask around among your family and friends for names of doctors they trust, doctors who are willing to investigate unusual cases.

Also, this may sound strange, but try to understand things from the doctor's perspective. Some doctors are really unsympathetic jerks, but a lot of them are just unsure of how to help and following protocol. Autonomic disorders aren't very well understood even within the medical field. For a lot of us, we have tons of tests that come back normal. We have such weird symptoms that affect so many areas of the body that it's hard to put together. And doctors have to be careful of over-prescribing testing when it's not warranted - it's expensive, puts a burden on our healthcare system, and in some cases puts the patient at unnecessary risk. I'm not saying this justifies doctors giving up on patients or blowing off their symptoms or sending them away - but I do think if you go into appointments trying to understand where they're coming from, it can help a lot with rapport and getting them to trust you - and that can help a lot in getting the tests you want.

I'm sorry to hear your going through this right now, I know it can be miserable and frustrating and feel like the whole medical field is ignoring you. I've had days and weeks where I felt so sick I would think "there's no way I'm going to survive this", and I think a lot of people on here have had periods like that. But thankfully, it's always passed. I'm sure it can be even scarier for you since you fear you've been misdiagnosed but try to focus on the fact that there's a lot of tests you have had done and a lot of serious things that have been ruled out. And good luck finding good doctors and answers!

[roxie]

Being admitted isn't going to do anything, drs don't know what drs don't know. And when they don't know it they blame you!

You're best bet is finding a dr that is knowledgable in dysautonomia and its related disorders who'll look for the root cause and run the needed tests. For hat though, you have to research and likely travel. However, it might be worth it.

Check the physicians list here and Dysautonomia Friend Finder on FB to see what is close to you and what people are saying about them.

[spinner]

If your health insurance can handle it, go to the cleveland clinic or mayo, etc.

Its not like a normal "hospital" where you have to be admitted. They run tests and try to get you moving along

quickly seeing specialists as information becomes available. You can fast track things if youre aggressive.

Id plan on a couple week stay so get an inexpensive motel, maybe a weekly. If you require hospitalization they

will surely admit you.

You need to find meds that can help you manage and function, and find a doctor who can eventually treat you

at home with the information they uncover.

Be prepared to be detoured into other areas, such as endo, gastro, internal, cardio, ETC.

That would be my advice if you can manage it. Better than going into some hospital where they

really cannot treat you.

MOST ER's only try to "stablize" you these days before springing you into specialization. At the CC, they can

actually TREAT you on the spot.

[Joann]

If you go to CC or one of the others make sure you have everything scheduled prior to going. I went in January and saw several doctors and then I had to schedule my tests and the soonest they could get me in is April and they were starting to look at May because they couldn't get one of the tests in, I said no, give me what you can for April.

And I know this happens a lot. One person, is really really sick. She just spent 6 days in ICU, her doctor wanted her to go directly to Vandy of CC. She chose CC because it was closer. When it was set up they made it sound like she would be admitted after seeing the doctor, instead, they have her coming back twice in April, again in May and autonomic tests in July! And her hometown doctor felt that she is now in Autonomic Failure. She had to be revived several times in ICU.

So make sure you schedule it all, before you leave. I think they are the place to get testing done, but it isn't always as easy as it sounds. Maybe because more of us are realizing we need this and their are so few places.

[dpeeps]

I am in the US.... From what I have experienced of the ER room (only two visits just prior to POTS diagnosis), they are simply evaluating if you are in a "life threatening" state. Once EKG comes back normal, vitals okay, bloodwork ok, they watch you for a little while, then send you home with instructions to see your primary care physician, regardless of how crappy you feel or how scared you are. If you are not currently dying or in danger of dying, the send you on your way. There is also "Urgent Care" which is where you go when you feel really bad and cannot get into see your regular doctor.

[khaarina]

I went to urgent care several times because my primary wasn't helping me at the time. In my experience, urgent care doesn't help any more than the ER. They just reffered me back to my primary every time. They didn't even run tests beyond vitals. The doctors who helped me the most where my second primary, who was willing to order test after test and specialist after specialist until he figured me out, and my second cardiologist, who understands autonomic disorders a little more than most doctors, had experience with tilt table testing, and knew what drugs would help (Midodrine and beta blockers). These docs have their flaws and both have looked at me a little sideways at times, but at least now I know what is going on with me to some extent and I have meds that help. The key is finding docs that are knowledgable about autonimic disorders and willing to take on a challenging case. It wont be easy, and you will likely have to go through several docs until you find the right ones, but they are out there. Good luck.

[SeattleRain]

I went to urgent care several times because my primary wasn't helping me at the time. In my experience, urgent care doesn't help any more than the ER. They just reffered me back to my primary every time. They didn't even run tests beyond vitals. The doctors who helped me the most where my second primary, who was willing to order test after test and specialist after specialist until he figured me out, and my second cardiologist, who understands autonomic disorders a little more than most doctors, had experience with tilt table testing, and knew what drugs would help (Midodrine and beta blockers). These docs have their flaws and both have looked at me a little sideways at times, but at least now I know what is going on with me to some extent and I have meds that help. The key is finding docs that are knowledgable about autonimic disorders and willing to take on a challenging case. It wont be easy, and you will likely have to go through several docs until you find the right ones, but they are out there. Good luck.

I went to urgent care and they brought in a wheelchair, forced me into the ER because I was complaining of breathing/chest/heart issues. That was a disappointment, too. Especially since they still charged me for the urgent care visit. Lame!

[Guest wishing&hoping]

I totally empathize with your frustration at being stuck in limbo waiting endlessly for docs to get their act together. I wish there were more dys centers around the country that worked in a multidisciplinary way. Having been in the hospital 3 times for other reasons, it is not the best place to get answers; in fact, with our impaired immune systems it can be dangerous. The last thing you want is a hospital acquired, antibiotic resistant infection. I say that from family experience, unfortunately. As others have said, I would try to really push your docs to get their acts together. Some doc needs to write a protocol for the rest of them!! But since most work in hospitals these days is run by hospitalists, it's the luck of the draw and unless you're at Mayo the chances of finding knowledgeable, helpful docs (not to mention RN care) are slim. I always find when I go to the ER that they shoot me with meds that I can't tolerate and I go reeling out of there, sometimes to the point of bumping into walls, but as long as you're technically d/c'ed they don't even notice!!

I feel for you, though. What a horrible system we're dealing with. Hang in there. I'm also feeling desperate for answers and getting tired of watching my life pass me by without doing what I love...

Hope you feel better soon

[POTS Mom]

I have been to the ER twice and hospitalized once in the past year for issues related to what I now know is POTS. However, at the time all I knew is I was really really sick and needed help. Unfortunately the ER was not the place to get it. All they do is run the standard blood tests (CBC), check your vitals and rush you out the door. I was having tachycardia and severe diarrhea so they did do an EKG, monitored my heart rate and checked for dehydration as well. But when everything was "normal" (my heart rate was elevated but they attributed it to dehydration) they sent me home. The ER will not do any investigating into your symptoms or the cause of your POTS. They are only there to stabilize the acutely ill or injured. Patients like us, as sick as we are (and we are DEFINITELY sick) only get frustrated by the experience of an ER visit. However, I understand your concern about having to wait several weeks to see your cardiologist. I am in the same situation myself. I was just officially diagnosed with POTS a couple of weeks ago after a 2 week evaluation at the Cleveland Clinic last month (for multiple health issues). Yet I cannot get in to a local neurologist for treatment of the condition until May 21st. I am feeling very lost, not really knowing what or how to cope with my symptoms (maybe the folks on the forum can help!). But, in the meantime, I have asked to be placed on the doctor's waiting list. That way, if they have a cancellation, perhaps I can get in sooner. Have you tried that with your doctor's office?