Getting Admitted To The Hospital

[Lethargic Smiles]

I have standing orders for fluids from my PCP. I just call the hospital and go to an infusion room (where people get IV antibiotics/chemo) and receive fluids. This is pretty much all the hospital can help me with.

The one time I was admitted to the hospital is when I had a 102 fever, severe dehydration due to vomiting, and my CRP was sky rocketing. They were worried something was seriously wrong. I ended up in there for 5 days and they never figured out what was wrong. The CRP went down on its own. It helped being admitted because I could get meds through an IV since I couldn't keep anything down. Other than that, I don't see a reason being admitted to the hospital would help. The doctors were willing to learn about POTS and were eager to help me find doctors who could help me, but really nothing was learned from this experience.

[Joann]

I know I have commented before, but I am currently having some major problems, primary can't figure it out and has told me to see specialists. Of course specialists can' t see me for a couple months. So I am waiting until my symptoms are bad enough to go to er.

I know that sounds terrible, but I am getting worse and worse at home and I know it is not going to just get better on its own. I would love to go to ER right now, but I am sure they would release me after running a few things. So when it gets so bad that it may be life threatening I will go. Currently, I cannot bend at all or lift anything or I get intense pressure and pain between my breasts (below the sternum) and under the ribs, it can also go in the back around the same place. The pressure builds and I feel like I will not be able to breathe. Each day, I can do less movement and bring it on. But no one seems to care. I called the Cleveland Clinic doctor that I have seen in the past and feel like I was getting the brush off.

Sorry, but I am so disappointed with the medical field. I am just waiting to get worse, to hope to get some help.

[Lethargic Smiles]

Joann, it sounds like this is already your thought process, but if you are this concerned for you health, just go to the ER in my opinion. I know it isn't the common wisdom here since often there's nothing they can do to help you. However, if the annoyance of explaining dysautonomia and the exertion of an ER visit sound less terrible than going longer without seeing a doctor, just give it a shot. Explain you feel like something is seriously wrong and cannot deal with the pain any longer. Something needs done. The worst that will happen is they'll say they can't help you.

[MomtoGiuliana]

I agree w Jackie that if your symptoms are getting worse you need medical attention. Do you have any dr you are under the care of that you can call? For peace of mind, going to the ER is an option if you are not getting any response from your doctors regarding these worsening symptoms.

[Joann]

Well, I called my insurance 24 hour line and they said call your primary again. I did and I am waiting for her call back. I told the receptionist the specialist can't see me for 2 months and I am getting worse and that the pharmacy filled a prescription I am allergic to. So I will wait for her response. But my primary will do lab work, otherwise she refers you to other people.

MomtoGiuliana and Jackie M - honestly in the past two weeks I have often felt like going to ER. The hospitals nearest to me are really small, so I am thinking the next time I go, I will go farther to a larger, research hospital, maybe they will help.

I also have to wait to have a ride there. Sad, isn't it, my family wants me to try and wait this out. I don't know what we are waiting for, a miracle or for it to get bad enough to be taken seriously? Thanks for suggestions

[Freaked]

Been to the er like twenty times and was kept in overnight I think...4 times? 3 times when my heart was racing for ages or I had bad chest pain, and one time for neuropathy where my vision and reflexes had gone funny on one side. But they've seen me so many times now that my vitals or heart rhythm would have to be bad for them to keep me in; the other day I collapsed on the way out and they just helped me up...and out.

My doc said he'd get me admitted, but never happened. Only surgery or critical patients get beds really, here at least.

[MomtoGiuliana]

Joann--glad you called your dr again. Let us know how you are doing.

[Lethargic Smiles]

Although I tend to agree with others that the hospital probably won't be fruitful based on my own experience, I think going to a larger hospital is a smart idea if you go the hospital route. You know your body better than any of us, so do what YOU think is going to help you most. If that is going to the hospital -- do it! Even if it just gives you peace of mind, that is something more than you have now.

I'm sorry to hear about the long wait for the specialist and how your family wants you to wait it out. That must be frustrating to not feel validated by them when you're working so hard to be a trooper. I think I'd just tell them I need to go and they don't have to agree, but could they please drive me so I don't have to pay for an ambulance ride.

I have two thoughts on the insurance situation..

1) If you explained your symptoms got worse and you were afraid something life threatening was going on, they'd probably pay.

2) If they didn't pay, hospitals have financial assistance programs that complete free you of the bill so long as you meet income requirements. Could you call and be vague -- just asking what the financial requirements are for their program? Typically you can use them once a year or once every other year. I've had some hospitals want documentation such as last years tax returns and some hospitals who just want my last pay stub. When I say I don't have a pay stub, they typically call and just ask how I get by and such, and once I explain I live with my fiance and my parents help us with groceries, they accept me.

Would getting medication to help with pain control until the specialist appointment be an option?

[Joann]

Jackie- thanks for the suggestions. As for the pain medication, they cannot give me pain medication because they are not sure what is causing this. It is really odd, I can be totally fine standing and walking, but if I have to lean forward to do something, the pressure is unbelievable and continues to build. If it happens too much I will get pain that stays in area also. Primary is trying to get someone to look at me sooner, I am just trying to make it through the weekend.

The problem with the specialist, is I don't even know if this is a gastro problem, could be anything.

[spinner]

Ryan, this is a brutal topic for a lot of us who have been to ER with out of control palpitations, debilitating weakness, or shortness of breath.

During those times none of us feel like we can function whatsoever. Even so, hospitals are extremely reluctant to give up a bed to anyone who is not in some sort of "grave" situation that is life threatening. I was admitted to a hospital for two days last year but thats the only time, but ive been to ER probably 7 times in the last 2.5 years.

Several times ive gone to ER and just sat in the waiting room hoping i didnt faint and just waited it out. Lol, ive sat there reading a magazine and other people have wondered why, but ive just said "im making sure i dont pass out" or whatever. I did that at Cleveland Clinic once during a nasty flare and they more or less insisted i get checked in (they have an awesome ER system) but alas nothing "life threatening" of course.

Theres one hospital im aware of that brilliantly has set up a BP machine in the waiting room and they'll check your BP for free. Also you can get 02 if you need it. More oxygen never hurt anything. I have an oxygen concentrator i bought off craigs. Use it occasionally but make sure obviously i dont overdo it at a high level. It helps when im "struggling to breathe" (the politically correct expression, because if you go into ER and your oximetry is 99 percent theyre going to tell you youre not having breathing problems, missing the point entirely that youre struggling to breathe, even if youre getting enough 02.

Breathing problems are something altogether different. You can say "im having trouble breathing" but doctors only go by oximetry and heartbeat and EKG etc. So unless they suspect anaphylaxis or serious arrythmia etc they'll observe you and release you. Theyre also checking for bloodwork and hydration. And you can always get hit up with the "patient has anxiety" diagnosis when they have no idea what else to say.

Its a catch 22 but if you genuinely feel like you need to stay overnight I'll be honest that I'd tell them that you'd been passing out or something equally serious. Otherwise they might write down "panic attack" if they dont observe your heart or BP

going wild.

I have continual bradycardia but ive never been admitted for it.

Have you tried clonapin? Gatorade? Magnesium? D3? Most everyone has something that smooths them out during a crisis.

But consider the idea of simply going to ER waiting room if youre feeling awful and hanging until it passes. Better to be there than not if it gets worse, and if passes you can simply head home and save a lot of money.

My two cents.