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    • #16440
      Michelle Gonzaba
      Participant

      Whether they are short or long, hospital stays are never fun. While they do give us a chance to heal and rest, there are plenty of things that can be unpleasant.

      For me, bed baths were not the highlight of my stay. The staff was professional, but I always felt super uncomfortable when they were done. Especially when they decided to give me one in the middle of the night. I never even thought about bed baths and I wished I had before I got one; maybe I would have been more mentally prepared.

      What were some tough parts of your hospital stay? What advice would you give to someone who is going to stay at the hospital for the first time?

    • #16450
      Jonathan A
      Participant

      I had never ever gone into a hospital in my lifetime.   After 6 months of searching for a diagnosis for all my 8 or 9 disabling symptoms and eye issues too, I cancelled my upcoming Cigna appointment and went to Desert Sam Hospital URGENT CARE to get a DIAGNOSIS.  They could not diagnose me  … made things WORSE  … transferred me to two other hospitals.  I spent February 4 to June 12, 2020 in three hospitals for over 4 months.  The nurses very nice and understanding, especially when Antibiotics given caused total hearing and speech loss for all four months, ..necessitating communicating by paper pads and white boards/markers. So my take away…….

      BRING A BLANKET  …very cold rooms and tiny thin flannel 50″ by 50″ pseudo bed blankets.  I needed to keep asking for two blankets EVERY NIGHT….. one for bare, cold legs and feet  … other wrapped around my neck & shoulders to keep warm all my exposed neck, short sleeves, and open gown back.  ALSO A WARM ZIPPER FRONT OVERSIZED HOODIE for cold nites  …. and even COLDER THERAPY ROOMS !!!!

      BRING YOUR PAPERWORK & EXTRA COPIES  ….  of all medicines, contact numbers, and documentation of all the tests, emails to doctors,   and symptoms of your unplanned illness.   After 8 months of undiagnosed MG,   and  complete loss of speech and hearing for 4 months  .. due to Antibiotics side effects from contracting three varieties of PNEUMONIA in that cold first ICU, a floor nurse at St JOSEPH’s hospital FINALLY recognize my OCCULAR M.G. Symptoms trying to watch TV  …. and I gave her my email and papers of my symptoms  …. and she diagnosed and read my M.G. symptoms right off … and got me tested and IVIG Treatments.   The doctors in the outside world had just BLOWN ME OFF …as a “POOR HISTORIAN”   … as I had too many symptoms for one disease….. even three neurologists consulting at first hospital were CLUELESS about M.G.

      BRING EYE MASKS   … they NEVER close the room door (bright hallway lights enter), turn off lights when they leave, or close a bathroom door (leaves the light on)  … so can’t sleep  … or turn on side away from light source.

      BRING YOUR 7 inch computer notebook and  cell phone …..  along with an extension cord, charger, and list of your banking codes, family email addresses/phone numbers, and websites.  I was trapped for 4 months SUDDENLY by one trip to URGENT CARE.   My bills needed to be PAID ON-TIME.  For the first 6 weeks I was wrist restrained to bed rails … ?? nightmares of being trapped- Banner reports of “self intubation” ??  found a year later  ..on websites with help from my home care nurse.

      BRING YOUR notebook with its camera  …. for three months,  they would not let me drink or eat ANYTHING  … all by tubes.   It was NASTY  … all those damn food ads on tv.   When I finally passed the OREO COOKIE TEST (camera up your nose to see if you could still eat and swallow), I took picture of each meal for three days in memory of my STARVATION.   Also photos of all the cream of condensed mustard soup poops on my blankets  …. to remind my self  NEVER  EVEN AGAIN.  Nurses not great at condom catheters. They  keep falling off as soon as you put any “p” into them  …. one huge very wet mess  ….. especially when my wrists were strapped to the bed rails and my feet and legs were pushed together  .. and locked into these white ski boots attached to the footboard of the hospital bed. (Later computer googling said the boots were an English invention to keep blood circulating in legs  … that were imprisoned in hospital beds).  So all the wet condensed soupy poop had nowhere to go but UP between my legs onto my font side, sheets, and blanket   … and I have the notebook camera photos to prove NEVER EVER AGAIN !!!!!

      HAVE A BROTHER TAKE phone photos  … that is how I finally found out my nightmares were real not dreams.  They did  wrist restrain me  …. so I could not escape or sleep on my side  …. or get rid of the snakes encircling my chest and neck.

      PLENTY OF PENS,  PAPER PADS, two spare reading glasses,  along with a holder/case.   YOU ARE TOTALLY BORED and they keep pricking your finger, giving you shots & pills, drawing blood, do portable X-Rays, and metering you  … even at 5:15 am after you had JUST FALLEN ASLEEP…. after a bad night of people leaving doors open and turning on lights.   A EYE COVER MASK IS ESSENTIAL  …. or ask the nurse for a hand towel every night as a mask.

      BRING SMALL,  DISPOSABLE BOOKS to read  …. You are BORED …. your time is measured …. waiting for the next MEAL  … if you ever get one … three months later.  Also there is a lot of useless SHIT on TV  .. trying to pass itself off as “entertainment”.  When you still have UNDIAGNOSED MYASTHENIA GRAVIS  …. after the first two months in two hospitals  …. your eyelids get very droopy … and your fingers/forearm is too weak to hold your good eye open for long period of time  …. to see the far away tv.  Ask the ACTIVITIES NURSE for an old magazines to read …. from downstairs  …. if you are wrist restrained in cuffs for two months also and they won’t allow you to get out of bed to eat or go down and be entertained by other trapped victims and activities support people.

      INSIST ON A WEIGH -IN for every THERAPY ROOM VISIT.   In the first 6 months of my search for a MYSASTHENIA GRAVIS diagnosis  … I lost 43 pounds … then more when I was not allowed to eat any real food for three months  … but ballooned up when they started piling PREDNISONE in me …. adding weight gain, acute insomnia, and precipitating diabetes …which I never ever had.

      CALL BUTTONS ARE VERY INEFFECTIVE  … and terrible slow   .. especially when your crotch and the sheet is full of wet smelly poop and watery shit (from no real food)  .. for 30 minutes plus.  TWIRL  AROUND, SWITCH FINGERS,  or REMOVE the WIRED FINGER THINGIE  on your left hand …. you get much quicker service  … if they think you are dying or no pulse.  CAN WORK ALSO with your air hose that keeps falling off your slit throat.  My Milton Bradley TUBBA RUBBA Game has more secure hose connections than hospital hoses  … you can twist and lock TUBBA RUBBA Hoses.  When your CHEAP hospital hose keeps falling off  .. when you twist and turn trying to sleep  .. help arrive sooner  .. when you get a poppy crotch  … and no one anywhere  .. despite repeated call button pushes.

      WRAP THE CORDS OF YOUR CALL BUTTON and YOUR TV REMOTE  … around your side bed rail.  If you can not find your button or remote  …. you can not get out of bed to search for it  …. especially  .. when they won’t let you out of bed for three months (except for board transfers to gurneys to test appointments on other floors) and I had to relearn to stand and walk again.

      BE FRIENDS WITH YOUR NURSES …They are very helpful, can get information, can explain why the HELL you just got two more syringes  .. when you don’t do that, or what are those capsules that you have never ever taken ever ever.  Also they KNOW or can find out. Doctors are a NO-SHOW   … if they ever appear  … usually at 6am  … or 6:15am ..after you have finally fallen asleep. Ask any doctor  questions QUICKLY  … while they are still putting on their gloves  … as they tend to disappear in under three minutes.    Also beware of male respiration therapists in red  ….. ASKING IF YOU WANT TO BE SUCKED.  I had never gone into a hospital in my long life  .. so was totally clueless of what they kept asking  … and I could not talk to reply  … after the first CLUELESS hospital that could not diagnose my MYASTHENIA GRAVIS kept me sedated  … and then slit my throat  … without telling me what they did or were planning to do.  WHAT DO YOU MEAN  ????  asking IF I WANT TO BE SUCKED ?????  No one had yet to tell me  … why my throat was slit and I was covered in hoses, Iv’s, and a green tank that would follow me to therapy  … after I had to go there to learn to rewalk  …. after three months locked to a bed.

       

       

       

    • #16477
      Craig
      Participant

      If you’re able to eat & drink, order an extra drink or two with your meal. Having that extra orange juice or apple juice on the table is handy at 3:00pm when the nurse shift is changing and they’re all busy, or at 11:30pm when everything is closed, or if you dinner gets delivered to someone else.  Getting your hands on a package or two of crackers, cookies, a fruit cup, etc makes a handy snack.

      Try to go with the flow.  Your scheduled MRI might not happen because someone more sick than you needs it.  My thymectomy got postponed a week even though I was on the gurney, premedicated in the pre-op area because someone came in through the emergency department who needed the surgical robot more than I did.  Keep in mind that the sickest person goes first in a hospital; if you’re not first that’s actually a good thing.

      Try to nap in the afternoon and go to sleep early at night if you can (actually sleep any chance you get)

      – they’ll come by to take vital signs every few hours – midnight, 4am, etc.

      – if they want bloodwork they’ll come for that at like 4 or 5 am so the results can be back when the doctors start rounds

      If it’s a teaching hospital, you’ll see a lot of medical students who are getting what might be their only look at a myasthenia patient in their careers.  You can say no, but if you can do the muscle tests and the eye ice pack test and etc for them it might help them diagnose someone else down the road.

       

      • #16478
        Craig
        Participant

        The hospital works on shifts, typically 7am-3pm, 3pm-11pm, 11pm-7:00am.   Things kind of stop at the shift changes while the nurses and doctors hand off to the next shift.  Most stuff happens in that 7-3 shift.   Activity ramps up at 4-5am as they get things ready, 7-3 is the busiest time, and then things start to slow down after 3:00pm – the nurses will still come by and check on you, you might get CTs or MRIs but a lot of the testing and even treatment functions (plasmapheresis, EMG testing, breathing tests) were all primarily first-shift activities.

        • This reply was modified 4 months, 3 weeks ago by Craig.
        • This reply was modified 4 months, 3 weeks ago by Craig.
    • #16482
      Marguerite Thibeau
      Participant

      If you have speech or swallowing issues have aback up way to communicate like a notebook and pens.  Tablets or devices that you can stay in touch with the world and be amused by, like ebooks or audiobooks when you eyes get tired. Most libraries have free downloads.

      Sometimes I needed help getting what I needed. One hospital wanted me flat on my back, so I asked for oxygen as it reduces my “load” helping with my allergies. They said it wouldn’t help! So I asked for a Respiratory Therapist who understand and got me what I needed.

      When I was in for my first MG symptoms, the doctors insisted I was having strokes, despite test to the contrary. I asked for a Neurology consult and was told it would take another 3 days. Sp I asked for a Speech Therapy Eval as I presented with slurred speech and swallowing issues and swollen soft palate that they wouldn’t consider, so the had one come quickly since I couldn’t eat. He got it in minutes, and went and told them. They proudly came in and took credit!  So think outside the box and get what you need.

      I needed a nasal feeding tube and was assured after 20 minutes of failing to insert that they were using the smallest one. I said no more interns trying , I wanted the most experience person in thes hospital, probably for Pediatrics and a Pedi tube. Shocked, they complied. It was done in 5 minutes.  I also insisted on picking the food mixture as I wanted to know what I was getting.

      As for what you need. Explain why you question, appreciate their help, enjoy the staff and be friendly and thankful. It matters. They work miracles.

    • #16483
      Craig
      Participant

      Margeurite, this a great point:

      I said no more interns trying , I wanted the most experience person in thes hospital, probably for Pediatrics and a Pedi tube. Shocked, they complied. It was done in 5 minutes. “

      I went through a similar thing when I was on Soliris and developed meningitis-like symptoms.  They did a spinal tap, and by “they” I mean a med student did their first one on me.  They got it done right as I was hurting my limit so it worked out, but it’s okay to speak up

       

       

    • #16551

      I wish to address your medical care; the need for your medical team to allow both you and your advocate to participate in your care.  The medical care team should advise you what tests, procedures, and treatments they are planning. They should advise you why and what they expect to accomplish.  The medical team needs to listen, answer questions, and discuss your/advocate’s questions and input.  Always insist your specialists be contacted and allowed to consult on your treatment.

      Communication is often the biggest problem during your hospitalization. Request that your nurse be included during any physician’s visit/exam. Your nurse needs to be able to give a report of past and current conditions. Your nurse needs to hear your physician’s findings and orders for your further care. It often happens to me that communications between nurses and my physicians are extremely poor.  The nurses may be unaware of simple orders, i.e. you can go back on a normal diet, or you can be discharged. Your various physicians do not know the orders of each other. Another pet peeve. Your doctor advises you of an order, but it is documented very poorly or not at all. You advise your nurse, but she is clueless. It often takes an extremely long time for the order to be worked out.

      Always remember that the hospital has a chain of command that is available to resolve any problems or complaints: Unit Nurse Manager, House Supervisor, and Hospital’s Patient Advocate. For example, your nurse call button requests very often takes as much as 30 minutes or longer.  I will always make a 2<sup>nd</sup> request after waiting 15 minutes. When the 2<sup>nd</sup> request is not answered, I place another request at 30 minutes for the Unit Manager to contact me ASAP.

      Anytime something unknown to the medical team/staff is causing a trigger that aggravates your MG, immediately advise them you need help in alleviating that trigger.  One of my pet peeves is prior to a procedure you are placed in an exceedingly difficult, painful, and warm/hot position (drapes covering you). This is due so you are ready for the doctor when they enter the procedure room. I have waited as much as ten minutes and often much longer. I explain why this will aggravate my MG. I request they wait to place me in position when the doctor arrives. Really, it normally will only take around a minute or less.

      I could go on but will allow other members to give some of their advice or similar issues.

    • #16553
      Marguerite Thibeau
      Participant

      Robert, lots of great points in here. It’s great when we can have a family member with us, but if not we have to advocate for our selves, with kindness and appreciation. We are consumers of medical services and they there to help us. Generally they are terrific, but mistakes are made, so be attentive and watch out for yourself. I changed hospitals twice to find a place that was better. Luckily my Neuromuscular doctor is fabulous!

       

    • #16578

      EXTENSION CORD.  A 6 foot extension cord allows you to keep your phone and other electronic devices charged easily.  I also take it when I get infusions. It’s also great gift to anyone going to or in the hospital

    • #17491
      Ralph
      Participant

      I would advise anyone who is planning treatment in the hospital to take a good book or sketchbook with them,

    • #17514
      Ralph
      Participant

      I would advise anyone who is planning treatment in the hospital to take a good book or sketchbook with them, or any thing that will help you to engage in your hobby in your free time. I also consider it important to use a medical mask and sterile disposable gloves in such places, since there are a lot of patients in the hospital and it is especially important to be careful now. In general, staying in the hospital is a rather boring activity and therefore you need to take care of what you will do in your free time so as not to interfere with other patients.

    • #17522
      John Ulfelder
      Participant

      Based on the advice of my primary care physician (PCP) on went to the local hispital emeregency room due to mt to key symptoms; I could not eat or swallow (even my saliva) and my eyelids were drooping badly and interfering with my vision. She and my opthamologist both correctly diagnosed MG as did the hospital. I was admitted and spent 4 and one half weeks in the hospital. I then spent anther two and one half weeks in the rehab hospital in order to get me on my feet abd ready for living at home. We worked hard on trying to regain my swallowing function and I was being fed and medicated by a tube in my nose for a week or two nd then through a tube directly in to my stomach. Fortunately, I regained my swallow function, got back to a normal diet and the tube was removed (now a nice scar)  5 months after its surgical insertion. My ptosis (droopy eyelids) have not improved and I am being counseled to have patience while I continue medication for my MG.  The hospital stay was not restful or pleasant. Nurses and the aides are overworked and underpaid. Not pleasant for anyone especially when you need assistance to go to the bathroom in the middle of the night.

      My advice, two key points. First, everyone confined to a hospital bed needs someone to act as their advocate/ombudsman. You can’t do it effectively while you are ill and subject to the control of the doctors and staff. They need to stay on top of your treatment options and overall care, ask questions and explore options, push for best treatment, and generally be supportive. Frankly, it is a daily responsibility with little time off. My spouse did it for me and I aware of how much of a difference it made for me. Second, despite feeling lousy, trapped in a hospital bed, besieged by well-meaning therapists and ignored by nurses, staff and at times, by doctors, try to hold your temper and maintain good relations with everyone around. They aren’t used to it and will respond accordingly.

    • #17536
      ANITA A. TARLTON
      Participant

       

      I keep my go bag packed and in the closet.  I have pajamas, cell charger, notebook,  pens, toiletries,  etc.

      I’m getting ideas here to add to my bag.

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