Jun 282013

Dear bidet, you have no idea how much I have missed you for the past 24 hours.

After struggling with inclusion body myositis for more than 17 years, it was a bout of constipation that finally sent me to the hospital. After 17 days, I owed too large a debt to my toilet to ignore the problem any longer.

I checked into Scripps Green Hospital late in the afternoon. I was in my Permobil C500 power chair, but I was forced to abandon that for a gurney. The hospital staff seemed shocked when I told them that I could not stand up and transfer, they would have to find a way to lift me. A Hoyer lift I suggested. They shook their heads. “We will get a lift team,” one orderly said.

Silly me, I expected to see a few rejects from the San Diego Chargers show up. Instead, it appeared that their lift team consisted of anyone who was not on break at the moment. I tried to explain that I had contractures on my left arm and left leg and that I would be no help whatsoever, not because I did not want to, but because I could not. Nevertheless, they each grabbed a limb and said “one, two, three!” and lifted. I have a fairly high tolerance for pain, and even when something really hurts I try not to make too much of it. I literally screamed out loud at the top of my lungs. But on a positive note, they didn’t drop me to the floor. This process was repeated when they transferred me to the x-ray table, then transferred me back, then to my final destination––a bed in room 466.

At last! Oh how wrong I was. You see in order to cure my bout of extreme irregularity they were going to administer “GoLghtly” which is mostly used to prepare for a colonoscopy. It makes you Go, but certainly not Lightly. In my case it was a way to force the issue. After drinking a couple of quarts of the stuff, I was ready for the next phase at about 3 am. A nurse’s aide came in response to my call button (eventually) and I explained what was about to happen. She extended her arm and wondered if I needed help to the toilet. Obviously the second shift had not been told about my condition. When I told her that I could not walk, stand, or even roll from side to side, she left quickly in search of help. Help consisted of two more aides and a bedpan.

Their technique was simple, but brutal. They would shove me to one side of the bed, rolling me in the process, then put a very uncomfortable plastic thing beneath and roll me back the other way so that I was perched on top of it. Now my pain was complete. In order to shut me up, they brought in several more pillows and placed them in areas that bothered me the most. Of course the entire process had to be repeated to remove the pan. And both processes were repeated five more times during the night.

By morning, I was declared “fixed” and a nurse asked if I would like to have breakfast. You would not think I could have an appetite after all that, but since I had not eaten for nearly 24 hours, I let them bring it to me. I don’t need to tell you what hospital food is, but fortunately it was not possible for me to eat any of it. My dysphagia means I must be sitting upright but the hospital bed wouldn’t take me to that position.

“Can’t you just sit on the edge of the bed with your legs dangling over the side?” the nurse asked. Once again I had to explain about having no upper trunk support. So they put the breakfast on the over-bed table and shoved it up close to my face. Of course I could not raise my arms high enough to even pick up a fork, let alone get something to my mouth. When the nurse returned and saw that I had not eaten anything, she offered to feed me a few bites. A few bites was all it took to send me into violent coughing spasms whereupon she promptly decided I needed a consult with a respiratory therapist and a speech therapist. For that matter, why not also have occupational therapy and physical therapy? (I was on Medicare with a good supplement after all.)

So, for the three hours before lunch, I was visited by all of them plus a case manager, charge nurse, resident doctor, dietitian and nutritionist. Then came lunch and once again they tried to feed me, and once again it was nearly impossible. By then they were ready to fill out my discharge papers and send me home. But there was one last minor detail. They had to get me out of the bed and onto my wheelchair. This time they did get a Hoyer lift, but none of them had used one before, so it was a part scary/comical procedure that lasted for the better part of half an hour and ended with me kind of in my wheelchair.

Now I am back at Huntington Manor, sitting in my very comfortable Permobil, secure in the knowledge that soon my two caregivers will use the overhead ceiling lift to painlessly lift me from the chair and place me in my bed.

I had asked one of the nurses why the hospital was not better equipped to handle people like me. Her answer was that they had all kinds of patients, not just people like me. Of course that is true, however local grocery stores also have all kinds of people shopping there, but that does not prevent them from having wide unobstructed isles, handicap parking out front, and automatic doors. Time and again I read of people complaining about the inaccessibility of healthcare facilities, yet nothing is ever done about it. if I were a little bit younger I might take this up as a cause. It is not that I am too old for the work, it is just that I know I would never see any progress during my lifetime.

  25 Responses to “A visit to the hospital is not for the weak kneed (or weak anything else).”

  1. I am so sorry you had to go through this. I’m glad you are back at Huntington Manor where they understand your limitations. Hoping you are feeling better.

    Donna PM-2007, IBM-2011

  2. My Oh My!
    glad your comfortable again…. And writing!

  3. I’ve had similar experiences in this country. Not nice at all. Stay strong

  4. Something is wrong with this picture. We advertise ourselves as the having the most state-of-the-art medical facilities… And we do not have a Lift readily available for patients who cannot assist the medical staff? One more subject for me to air.

  5. I feel for you! I have been thru the same things you mention. I am now very afraid to go to a doctor or hospital!! I wish I could continue to paint since I love it so. How do you still do it? My hands and arms are much too weak.

  6. Mike, this account is positively horrid. I can only say that your taking the important step of recording the experience in a public forum is extremely valuable. Again your talents and the cursed IBM means that you are contributing to information no on else is providing for public education. I am thinking of you and proud to be a member of your genetic family.

  7. This sounds like a positive nightmare. So sorry you had to endure such an experience. It does make one wonder about our healthcare system….

  8. Oh Mike, what a terrible experience! Jack was hospitalized after a bad fall a few years ago and went through similar experiences for 6 days. I wrote to the hospital administrator to bring his attention to a bad situation and he actually agreed to see me. I had a meeting with him, the director of nursing and the VP of nursing. Of course none of them had heard of IBM, but at least they listened. But, (you know what that means)

    after another fall last year he was admitted for “observation” for one night. I told the charge nurse on the ward to treat him as if he were quadriplegic – he could not get out of bed, he could not use the toilet in the little bathroom, he needed help eating. Most of what I said was heard, but there was a terrible situation with a commode chair (which they did not put over the toilet) and the CNA walked off and did not come back and he called me loudly (cause I was in the ward waiting area). When the charge nurse heard, the CNA got Hell, and they had to search for a Hoyer lift to get him off the commode, then both CNAs just walked off mumbling. Some things never change. I am so sorry that you do not have an advocate to go with you when emergencies happen. And some hospitals MUST learn how to treat their “customers.”

    Again Mike, so sorry this happened to you. Let it be a lesson – never get a rare disease!

    All the best, Maureen

  9. been there, done that. it’s particularly pleasant when the staff decides your problem is fat and lazy and just being uncooperative. i really wonder how i’m going to end up. my future is very scary.

  10. Myositis sufferers are the most misunderstood group of patients. We each have different levels of problems and doctors just don’t see what we go through on a regular day of activity. I can stand and walk with a walker as long as my knees are locked…if knees arent locked, it’s like someone flips a switch, my leg muscles shut off and down I go..I need paramedics to get me back up. if I’m lying down, I’m like a beached whale. Very confusing for caretakers when hospitalized and hard for me to explain. I understand perfectly everything you experienced and the frustration of trying to explain that our muscles just don’t work the way we’d like them to.
    After fracturing my back in one fall, then tearing groin muscles in another fall, I had to spend a total of 4 months in rehab facilities to get back on my feet. In each facility, it took me no less than 2 weeks to “Train” nurses, CNAs and therapists how to deal with my unique issues.
    I plan on printing out this article and it’s responses for my doctor to read…we need to get medical professionals to understand our dilemma.
    Thank you for sharing your experience. I hope you never go through anything like that again. Please stay well.

  11. Thank you for all the comments. As I re-read my post I feel the need to emphasize that the staff were not trying to cause pain. in fact, they wanted to be as helpful as possible. But they simply did not have the facility, the equipment, or the training in dealing with this type of disability. I have been told by one mobility specialist that myositis patients are especially difficult because we can be nearly totally paralyzed and still retain full sensation, unlike people with many other types of paralysis.

  12. This month’s print issue of New Mobility highlights the problem of ADA compliance by medical providers. Unfortunately the article isn’t available online, but here are a couple of excerpts:

    “It’s impossible to assess the exact breadth and depth of noncompliance, but a safe assumption is that the great majority of health care providers in the United States are in violation of the ADA…Of eight subspecialties surveyed by Dr. Tara Lagu and her research team, gynecology–at 44 percent–had the highest rate of inaccessible practices.”

    “While hydraulic barber chairs have been available for more than 100 years, fewer than 10 percent of health care facilities provide accessible or height-adjustable exam tables. Digitized scales built into the floor to weigh institutional laundry hampers are in common use, yet hospitals and clinics refuse to install accessible wheelchair scales.”

    “The net effect–for people with disabilities, at least–is that the importance of common medical tools like exam tables and scales are downplayed, perhaps because they have nothing to do with ‘fixing’ the disabled patient. But they have everything to do with maintaining health.”

    My perspective: It doesn’t matter how well-meaning they were. They have legal requirements that they are not in compliance with. They have ethical requirements as health care providers to, at minimum, do no harm.

  13. It’s so important for the people who love and care about someone who goes into the hospital – for any reason – to be advocates. I’ve been through this with my Mom, Dad, step-mom and step-dad and what has been apparent in every hospital stay is that someone from the family who will speak up must be present. Things slide when an advocate isn’t there. Things as simple as giving someone a call button when there is no way they could manage to push it, or as in Dad’s case, placing the call button four feet away. Or how about not bringing what they need to breathe? Advocates are critical – because when you are in the hospital it’s really hard to advocate for yourself.

  14. What a disgrace………………… I am so sorry you had to endure “professionals” who don’t know a whit about your situation… and definitely,,,, grocery stores, costco…. everywhere but a hospital…. If you need anything, please let me know. DeAnna

  15. Mike this is an article that should be published by major media outlets. Would you gibe permission to have this post copied and distributed?

    • Sure. The wider exposure this issue gets, the better.


    • Dagmar,
      Mike’s writing ability shines through in this article, yet is no surprise to those of us who have for decades enjoyed his articulate, clear-eyed work.

      Few know that Mike was one of the original Mad Men, who abandoned Detroit and NYC to go West to California. He developed concepts and wrote ads for Pontiac, among may other big names.

      His work products about the disabled indeed deserve a much wider audience. Best of luck in making it so.


  16. Mike,
    I have to thank you for taking the time to post your nightmare experience. I shared it with my family and have to say I am terrified to go into the hospital!!! You are a very eloquent writer.

  17. It’s obvious that your keen sense of humor was essential to getting you through a horrible ordeal.

    I wonder why it was necessary for you to go to a hospital to administer GoLightly. I assume you have a Hoyer lift in your apartment and a better means of evacuation than a bedpan. One or two nurses should have been able to take care of the whole process while you remained in your room. It would have been much more comfortable for you, less work for the nurses and much cheaper without the hospital.

    • This is part of the larger debate which, like most of these debates, leaves those of us who actually are affected by the decisions completely out of the process. It would be far better for people who are disabled to be treated in a home setting or an assisted-living setting without the need to travel to a facility which is not equipped to handle them and which is a warehouse of deadly diseases. The process I went through could have easily been done here in assisted living by one visiting nurse assisted by one of my caregivers. The one thing that would have been important would be to have a physician monitoring the process in case there was need for rapid intervention. Of course our system has been carefully set up so that that cannot happen easily. There would have been no need for the entire admission process, discharge process, or any of that retinue of ancillary service providers who eagerly popped into my room to be sure they showed up on my final bill. Since Medicare and my supplemental insurance will pay for it, they probably think I will not even notice. But I will. And I will continue to voice my outrage over the stupidity of our entire health care system, especially as it applies to those who are disabled or chronically ill.

  18. My mom has late stage IBM and her hospital (and ambulance) visits mirror this one. The most common issues are the disbelief one cannot sit up or stand on their own, the inability to address with dignity for the patient transfer and toileting needs. Finally 2 years ago I began describing her as having a rare form of MD and that she should be treated like a quadriplegic (No, she can’t tuck her arms in or sit up or press the darn bed buttons b/c of where they’re located…) We’re on hospice now and still at Emeritus Carmel Valley’s AL facility. I still had to explain her condition, but once explained, hospice has done its own research and shared information across their team. That’s been refreshing. Anyway, I have no answers for how to fix this problem but I am very glad it’s being documented here.

  19. Thank you Mike for posting a description of what we face in the hospital and doctors offices, which are rarely ADA compliant, and never IBM friendly. I am sorry that this happened to you I have been catching up on appointments lately, and have skipped sitting in the waiting room, standing on scales, and using the restroom as none were accessible. I stopped going to one doctor entirely because of these issues, as well as very heavy doors. I am terrified of having to go to the hospital or nursing home. Two years ago I was ambulanced to the ER after a fall. The initial X-rays and cat scans were excruciating, as I was manually transferred to tables and ordered to “scoot” over. This was the first of many times I had to explain that I couldn’t “scoot.” Part of the problem was weekend care provided by substandard part time staff. They tried to send me home with four broken ribs and badly injured back. In my pain I still had to be my own advocate and insist that I could not leave. I was admitted to a non ADA room with a staph infected roommate. I tried to explain many times that I could not sit up myself (I couldn’t even lift my head from the pillow!) and that I had to do so to eat or drink without choking. The aides stood by and watched me figure out a way to painfully maneuver myself into a position whereby the head of the bed could lift me into a sitting or transfer position. Every time. They refused to leave the bed up high: hospital rules. I had to request a walker, commode to raise the toilet height, wheelchair, and appropriately sized, smaller chair. No cushions or risers were available. The wheelchair was comfortable for sitting, but when I went to the bathroom, it disappeared, “hospital rules,” no wheelchairs allowed in patient rooms. I learned how to center the commode over the toilet myself after the CNA left it overflowing. When Monday arrived, the regular, professional, compassionate x ray tech warmed me with blankets, and suggested a vertical, pain free X-ray, which should have been offered originally. I also insisted that a professional phlebotomist replace my bleeding IV connection, which I knew was not “normal.” There might also be rules that the call button and telephone be placed 4 feet from the bed; I had to continually ask for them to be replaced nearby. My AFOs (I don’t think anybody understood why they were needed) were placed out of reach, and the walker eventually moved far enough away so that I couldn’t escape on my own. I was given nothing to eat for 18 hours except painkillers which I cannot tolerate. By that time I couldn’t keep anything down, and my other meds need to be taken with food. The gluten free diet, when it arrived, was horrible and difficult to swallow. I refused the diabetic food as I am neither diabetic nor overweight. The nurses were wonderful, but I believe their hands are tied as their suggestions must be approved by a doctor’s orders – much later. The hospitalist concept was new to me. How awful to be treated by someone you have never met. The only treatment given to me was painkillers. I asked for ice and heat and showers. Weekday techs were competent. With the exception of one wonderful woman, the CNAs were at best incompetent, and at worst, rude. “Joan” tried to seat me in the oversized and underheight chair. “Hospital rules.” I explained that I would fall to the floor if I bent my knees. Assuming that I was lazy, fearful, or lying, she said, “Honey, you’re gonna have to bend those knees sometime, so you may as well bend ’em now.” The doctors and nurses were careful about infection control, using antibacterials between patients. However at the end of the day, from my position My roomie and I watched a janitor wipe the bathroom, the room sink, floors and finally, the IV stand – all with the same rag. When I could finally get myself up, I took antibacterial wipes from the door dispenser and cleaned the sink and commode myself. A CNA caught me in the act and reprimanded me; you guessed it, it was against hospital rules. By the end of the stay, as the wait for toile ting help grew longer, I was able to sneak out of bed to go. Thankfully, as I was never offered a bedpan or depends. The rule seemed to be the routine use of absorbent bedpads. The indignity of this, coupled with the potential for infection, was unbelievable to me. What would I do next time? I have written instructions prepared, including an order that although I have IBM, I am to be treated as a quad lift wise, who feels pain and needs the bed, seating and assistive devices to be as high as possible. I would bring my own food and drink. I hope that someone follows my instructions if I am not able to speak. If I am mobile, I will break the rules and write the correct diagnosis, a description of my abilities, needs, allergies, etc. on the room’s whiteboard. Also a disclaimer that I don’t have MS, MG or M anything else that somebody’s relative or friend has, except maybe muscular dystrophy. I do suggest at every appointment that medical facilities make accommodations for IBM. I have witnessed no changes to date. The easist change would be having one hip chair in house, and an adjustable examining table. An in-service for staff presented by MD or TMA reps would be ideal. I am not an ADA expert but the violations must be considerable and as I do not observe change I can only assume that enforcement is nonexistent. I wish I could do more about advocacy, but even this reply has taken me several hours to write, and I will pay for this, or anything requiring a chunk of time or an extended single positon, dearly in terms of pain, fatigue, loss of grip. I hope someone who has more ability and energy can take up the charge, whether reform occurs in my lifetime or not.

  20. With such a lengthy response, I still left out a detail. The CNAs failed to lift the seat each time they placed the commode over the toilet. Picture what happens when it is used misaligned, over a seat… or not. I am not looking forward to colonoscopy prep at the hospital. Neither am I looking forward to yet another overnight sleep study. (The insurance won’t cover a short outpatient “nap” study.)

  21. go over to the pro publica facebook site and post your experience. There are journalists who follow the conversation there.

  22. I had a similar experience last year, when I had to be admitted to a local hospital for what turned out to be an infection in my ascending colon. I couldn’t believe that a highly-rated teaching hospital was so unprepared for someone with muscular dystrophy. When I went in, I could still stand and pivot to use an elevated commode on my own, with the help of my mobility chair with an elevated seat. But after being bedridden for three weeks, coupled with severe gout (side effect of prednisone withdrawal), I was no longer able to move on my own. Aides were insisting that I pull myself up in my bed, which was impossible even before the hospital stay. I have FSHD, but my quads and hips have also been severely affected. Yes, they dragged me painfully between bed and gurney for tests. In X-ray, the lift team dragged me by a sheet and let my head bang on the steel table. It was exhausting to have to give a detailed account of my disabilites to every person during every shift change. Hostile aides, challenging you at every assertion that you can’t roll by yourself. Arguments every time you need to be pulled up in the bed to get the bed’s hinge at your hip, to be able to sit up to eat. Food trays at shoulder level. And all the while, your own doctor admonishing you that you have to get up and sit in the chair! The one hoyer lift, hidden in a closet on another floor, was operated by batteries that no one had charged for ages. One nurse tried to charge them and after two days, they weren’t holding a charge. And no one knew how to use it. Then they persuaded me to do a few weeks of rehab, or I’d have to go to a nursing home. Again, no clue as to my needs. I kept telling them I’d need to be able to stand as I did before. But the occupational therapists were more interested in having me peel apples. They were fixated on my being able to transfer to a commode, but that was a nightmare as I am unable to lift myself with my arms; after one extremely painful attempt that involved nearly splitting me in two, they quit, but then I was labeled uncooperative. My insurance was threatening to terminate my visit because of this, until I explained that I didn’t do it that way at home! The ‘one size fits all’ mentality was frightening. I was scheduled for more frequent therapy on my legs the week prior to my discharge (three weeks in rehab), but the therapist that was scheduled injured her foot and wouldn’t be coming in. There were no substitutes available. Now they wanted to do a colonoscopy, but I could not swallow the GoLightly liquid with choking and gagging (dysphagia). I asked to have it administered through a nasogastric tube, which at first they laughed at, until the gastroenterologist suggested it himself. After a hellish night of preparation, the actual colonoscopy was a breeze. It was normal, and I was sent home, still bedridden, using adult diapers. A few months later, I had another bout of what seemed to be the same condition, but this time it was my appendix (I think they missed it the first time). And with an open wound, with a wound vac attached to it, they wanted me to do an inpatient rehab again. I try to remain hopeful, but I turned them down. And they tried to make me feel guilty for not wanting to “get better.” My insurance refused to pay for the ambulance ride home, as it wasn’t “medically necessary.” Well, I can’t exactly take a cab or get in or out of a car. I couldn’t get into my mobility chair for a transport. Should I try to find a friend with a truck and hire a bunch of Boy Scouts to transfer me on a litter made from staves and blankets? When the hospital called with a survey after my discharge, I did tell them about their failure to adequately take care of disabled persons. And the nurse supervisor for the floors I was on did call me for followup. She was appalled and very sympathetic, so I can’t say that things haven’t changed. But I don’t want to ever go there again.

    I shouldn’t have been surprised. A few years ago, when I could still drive and walk with a rolling walker, while trying to get a mammogram, I discovered that the hospital did not have elevated toilets. I had to strap a toilet riser under my walker to use whenever I went out. The same is true at my doctors’ offices. My rheumatologist’s office had no exam tables that I could climb up upon. Same with the xray table. They offer you a 10-inch step to climb up on first. There was, and is, no chair in any of my doctors’ waiting rooms that I could sit on, nor an accessible toilet. The automatic doors are not time to allow enough time to get through them before they slam into you. I have told all of them this, to no avail. And now, there is no way that I could go to the doctor.

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