May 22, 2011

How to Be Comfortable & Safe In the Hospital

If you have POTS, you may spend more than your fair share of time in Emergency Rooms or admitted to the hospital, for treatments or diagnostic testing. I have been in the hospital too many times to count since I first started developing POTS symptoms last year, so I've accumulated some tricks to help me and my family be more comfortable during a trip to the hospital.

1. Bring all of your daily medicines and vitamins with you to the hospital in the original bottle if you can. This makes it easier for you to remember exactly what meds you take and the doses you take, and the pill bottles usually have the prescribing doctor's name and phone number on it, which can come in handy when you are seeing a new doctor in the ER who may want to consult with your regular doctor(s). Also, if you take meds on a very specific time schedule, it can be pretty hard to get your meds in a timely manner in the hospital. First you have to get one of the doctors in the hospital to put in an order for the medication with your nurse, then the nurse has to order it from the pharmacy, then the pharmacy has to fill the order and deliver it to your nurse, then your nurse has to find the time to bring it over to you and most hospital nurses have six or more patients to tend to, so they are very busy. I've noticed that the nurses usually give out meds only three times a day - AM, lunchtime and bedtime. If you need a pill an hour before dinner - good luck with that!

Most hospitals have a strict policy that does not allow patients to take their own medications from home, because if there is an emergency the doctors need to know exactly what drugs you have taken and when you last took them.  Plus they want to make sure you aren't sneaking some illegal drugs while you are under their care.  Sometimes you can ask your doctor to write an order for the nurses to allow you to take your own meds. Sometimes you can't, but I will confess to taking my own meds at my regular dose and time when the hospital staff just can't get their act together. I learned the hard way after waiting 2 days for my asthma meds, and then having a bad asthma attack before they showed up with the correct asthma drug a half hour after the attack started.  Screw the rules, don't let yourself get sick if that's what happens when you skip your meds.

2. Bring your own easy to put on pajamas or sweat pants, with no metal on them. They might force you to wear those hideous drafty hospital gowns, but you can usually get away with wearing your own PJ bottoms, and sometimes they will even let you skip the gown and just wear a t-shirt or tank top.

3. Bring slippers or socks with rubber soles. Hospitals don't like you walking around in bare feet or sock feet, unless the socks have rubber treads, to prevent slips and falls. Many hospitals now give you thin socks with rubber treads, but they smell like gross plastic and some have latex in them, so watch out if you are allergic to latex.

4. Be friendly to your nurses and aides, even if you think they are jerks. Most nurses in the hospitals are totally overworked and tired, so cut them a little slack. Also, they are your key to happiness and comfort in the hospital, so try to get along well with them if you can.

5. If there is a nurse or aide or phlebotomist (person who draws your blood) who is truly horrible to deal with, you have a right to ask to speak to the nursing supervisor or charge nurse in your unit or floor, and you can explain the situation and ask for your nurse to be switched to another patient. Keep in mind that they could be short staffed and you may not get a new nurse, so you are only pissing off your existing nurse even more, and the new nurse you may get will know about your problem with the prior nurse, and may not be too thrilled to help you after that.

6. Many hospital charge $6-$10 dollar per day each for rental of the TV and the telephone.  If you are in the hospital for several weeks, that can add up to a huge bill really quickly.  So I try to get a room where my cell phone works, and I bring my laptop to watch free movies my family borrows from the library for me.  If the hospital has free internet, you can even watch lots of TV shows and movies for free on

7. Ask for a window bed if at all possible.  The best time to ask for this is when they are working on the paperwork to admit you.  Tell them you get kind of claustrophobic if you don't have a window, and it would make you more relaxed if you had a window view.  Quite often, you just get the first bed available and you have no choice.  But if you are going to be there for a week or more, considering asking the head nurse on your floor to move you to a window bed if one becomes available during your stay.  Keep in mind this creates extra work for the cleaning staff, because they have to clean the window bed space before you move there, and then they have to clean your space after you leave it - so be sure to dole out lots of pleases and thank yous.  Also, if you have a loud roommate who screams all day and night or someone who has a bad infection, it's O.K. to asked to be moved as soon as a bed becomes available.

8. If you have food allergies, ask to speak to the dietitian and don't be afraid to call the kitchen to make special food requests if the dietitian never shows up.  For example, if the hospital kitchen keeps sending up fish and it's just disgusting, you can tell them you have a fish allergy so they won't send you the fish anymore.  Yes, this is lying, but I'm not running for sainthood here - just trying to share my tricks for having a comfortable hospital stay.  And I am allergic to some fish, so I'm not lying when I say it.  similarly, if you can't eat gluten, tell them that and don't always believe them if they tell you certain menu items are gluten free.  Ask to see the ingredients or the packaging.  I had a major NYC hospital telling me that Cheerios were gluten free, and they are NOT gluten free because of the gluten contaminated oats in them.  They also told me their chicken was gluten free, and while plain old chicken is gluten free, their chicken has spices and flavorings added that did have gluten in them, which I discovered when I asked to read the packing labels listing the ingredients.  Your best option is to have your family bring stuff form home if you have lots of food allergies, but that is not always possible.  Things that can't be contaminated in the kitchen are a good choice too - like baked potatoes with the skin still on them, bananas and boxed items like juice and yogurt.

9. Ask you doctors questions about the tests they want to run on you.  Make sure you know the rules about whether you can eat or drink beverages before the tests, and stick to those rules.  Try to have a game plan with your doctor - why are you in the hospital and what are you trying to accomplish while you are there.  What's the time frame in which your doctor expects all of your tests can be completed?  If you get very nervous during enclosed tests like MRIs, ask your doctor to put a note in your chart telling the nurse to let you have a small dose of Xanax or Benadryl before your test to keep you calm.  If you have never taken either of these drugs before, ask your doctor to let you try it at least once before the test so you can see how it makes you feel.

10.  Ask you doctor to print out copies of your tests results as soon as they are ready.  Most doctors can do this with the click of a button when they are seeing you in the hospital.  if you wait to get home to get your records, you will probably have to pay a fee of 25 cents to $1 per page and it could take months.

11.  Be friendly to your roommate if you have one.  They are probably just as bored and homesick as you are.  You know what they say, misery loves company.

12. If you are in the hospital for more than a few days, it's important to bring some photos or reminders of home to keep your spirits up.  My family always sends me cards and I always tape them to the walls - especially the cute handmade ones from my little nieces and nephews.

13.  Open the windows in your room if possible.  Hospitals are filled with germs and some fresh air is good for you.

14.  Speaking of germs, make sure everyone who examines you or touches your IV equipment or draws your blood washes their hands and wears protective gloves.  It's not only to protect them from your germs, but it's also to protect you from the germs they could have picked up form the 100 other patients on the floor that day.  If you see someone changing your IV lines with no gloves on, or not wiping the connectors with alcohol before connecting the IV to you, or trying to stick you with a needle without cleaning your skin first, say something!  I had a nurse actually try to hook me up to an IV line that had fallen on the bathroom floor, and she didn't even wipe it with alcohol pads first.  This is disgusting, and not to mention very dangerous.  Most nurses know better than to do that, but you never know who you're getting, so keep an eye out to protect yourself.  I asked her to change the tubing and she refused, so refused to allow her to hook me up to the IV, so she called my doctor to tattle on me, and when my doctor came in and I told her what happened, she reported the nurse.  The IV tubing actually had blood all over it, which was probably mine from the surgery I had that morning, but your can't just assume it's clean when you are in the hospital.

15.  Before you sign any discharge papers, make sure you are really ready to go home.  Do you have a game plan for following up with your doctor?  If you need a wheelchair, has the discharged nurse arranged for that?  If you need a visiting nurse, when will they be able to come to your house for the first visit?  Do you have all of the prescription slips you need?  Do you have a way to get home?  Do you have your follow up appointments scheduled?  Are you ready to go home, or do you want a second doctor to review your record to see if you still need to be an in-patient?  Don't sign the discharge forms until your are 100% ready to go.  In most states, you have the right to a review of your discharge if you disagree, but keep in mind you may also have to fight with your insurance company later on if your doctor says discharge and you refuse.  One time, I had an attending doctor who only spent about 1 minute looking at me and had never met me before.  He said I was ready for discharge, even though I wasn't.  My nurse must have known he was being an idiot, so she told me "you know they can't send you home if you are having severe chest pains."  Funny enough, I was having severe chest pains and severe tachycardia, so they called in a cardiologist to look at me when I refused the discharge and he put me right back in bed and decided to keep me as an in-patient for another week.  It's not that I really wanted to hang out in a stinky cramped hospital room all week, but I was not well enough to be at home at the time.

Checklist of Stuff To Bring to the Hospital (most items are only if you are admitted for more than a day or two):
-all of your medication and vitamin bottles
-your regular doctor's phone number
-your insurance card, one credit card and your driver's license
-pajama/sweat pants
-tank top or other shirt with large sleeve holes (in case you have an IV in your arm)
-rubber soled socks or slippers
-your own pillow
-your own body soap, shampoo, conditioner, deodorant and body lotion (the ones the hospital give you may smell gross or you could be allergic to it)
-magazines or books to read (you can donate them to the hospital when you are done with them)
-playing cards or other quite games to keep you occupied
-cell phone (it may not work)
-iPod so you can drown out the noise of the hospital and fall asleep to some Jack Johnson or other mellow music
-laptop, especially if they have internet in the hospital or if you have movies you can play on the laptop
-snacks from home that you can't get in the hospital (consider asking a friend to bring cupcakes or cookies for your nurses too - kissing up to your nurses is a good thing)


  1. LOVE these : )
    I use most all, but the lying saying you have a fish allergy is brilliant!!!!

  2. As a new POTSie, I'm not exactly sure when it's appropriate to go to the ER. I've only ever gone when someone makes me or I lose consciousness. I haven't figured out the signs leading up to an episode, so when is the hospital necessary? Tachy or Bradycardia? Chest pains? Trouble breathing?

  3. I would say you should go to the hospital when you don't feel safe or comfortable managing your symptoms at home. Chest pains, shortness of breath, tachy and brady are all serious symptoms that should not be taken lightly. It's especially important to go to the ER during an episode if you haven't figure out what is causing you to have POTS like symptoms. Have your doctors ruled out serious heart problems, lung diseases, etc.?

    For me, I went to the ER usually because of shortness of breath. Now I have oxygen and a nebulizer machine at home, as well as a finger meter that measures my oxygen saturation levels. I have learned to use these tools at home to avoid many trips to the ER, but there are times when I still can't handle the shortness of breath at home, so I end up in the ER.

    The other thing I learned is that some (not all) of the doctors in the ER weren't going to do anything to help me anyway. Sometimes I would lay there for an hour or two gasping for air before anyone even came to see me, so that weighs in to my decision to go to the ER or not. Are they even going to be able to do anything to help me?

    Each POTS patient is totally unique, so I can't say when you should or shouldn't go to the ER. When in doubt, err on the side of caution and just go. Once you have a better understanding of what triggers or what is causing your symptoms and how to better manage them on your own, you may feel the need to go less often, but don't feel bad about going to the ER. You gotta do what you gotta do!