Dealing With Prednisone Withdrawals
The huge assignment given me by my doctor to wean off prednisone, the steroid which mimicked the excessive cortisol I had lived with for 14 years, was daunting and confusing. I was given approximate doses to try, such as 15 mg. of prednisone in the morning and 5 mg. in the afternoon, then cutting back ½ mg. every three days, or every week, or whatever I could tolerate. Too little of it would cause lethargy and fatigue, and too much of it would have me cleaning house all night. Most of the time for every two steps forward, I took one step backward. There was no exact science to this. All I knew was the sooner I could get off of it, with all its nasty side effects, the better. One of the miracle aspects of cortisone-related medicines (or natural cortisol) is its anti-inflammatory effect. Some people use it short-term (i.e., a Solu-Medrol dose pack) for things like tendonitis or asthma, and it can help immensely. But it may also cover up pain and damage caused by exercise-related torn ligaments and arthritis. So was the case with me as I started to withdraw from prednisone.
The more I lowered my dose (ever so slightly), the more severe the pain in both shoulders became, and I could no longer sleep on either side. I hate sleeping on my back! Up until my surgery I had a regular exercise routine consisting of upper body free-weight work. I could no longer do this and was in constant pain, so suspected I had injured myself. The orthopedic surgeon I was referred to was a friendly old doc who I had seen around the hospital and had a pretty good reputation. He ordered an open MRI of both shoulders and complained of the graininess of the pictures (see my posts on MRI’s). However, it was obvious to him that both shoulders had rotator cuff tears and bursitis, most likely caused by the triangular-shaped bone on the top of each shoulder called the acromion. This is supposed to stick straight out over your shoulder allowing enough space to raise your arms, but mine were very long and hooked and were digging in the bursas. (Bursas are like little plastic bags filled with oil that keep bones from rubbing against each other). So mine were damaged, and thus not doing the job of reducing friction. My surgeon would have to shave off the hooks (not uncommon) and mend the tears. He said I would have at least a six-week recovery period, so which shoulder would I like to start off with? I would be starting my first year of nursing school in just a few weeks, so I opted to have surgery on my right shoulder during my month-long Christmas break.
The down side was that the surgery would keep me from working again during a school vacation. Most of the pre-nursing students had already been working all summer as nursing assistants, developing relationships with the various units in the hospital. I recognized the importance of working during school vacations, as this particular nursing school and its partner hospital were known to be very political with fierce competition to get into either one of them. The more relationships a nursing student developed in the hospital, the better. Having only worked in the ER on night shift, I didn’t have that many influential contacts and really needed to spend some time working during the day. Emergency room night shift people were also viewed by other hospital employees as being “different” – and not in a good way.
The desire to get back to work prompted me to call my manager and asked if I could come back to work part-time. Since I couldn’t lift anything because of my shoulder pain, and couldn’t bend over because of the brain surgery, the only position available was a reception desk job for six hours in the evening. I looked forward to finally getting out in the land of the living, but quickly realized I wasn’t ready. The first night there I found it difficult to focus and was very anxious. Working at the ER had always been a fun and exciting job, but now I couldn’t wait until my short shift was over.
On the second night I felt even more agitated than the night before, but it gave me the edge I needed. When on steroids, a person can go from zero to 100 on the anger scale in five seconds flat. When I had worked full-time, I was usually able to control myself when receiving criticism from nurses, but not on this night. A nurse who was unanimously disliked by all the technicians, and had constantly berated me for the past three years, came out blasting me for sending a pregnant lady up to have her baby. Her argument was without merit, and I always had been able to shrug and walk away from her because she was a big bag of hot air and everyone knew it. But the volcano within me was erupting and I couldn’t do anything about it. Instead of backing off and walking away I got right up into her face and told her she could stick it where the sun didn’t shine (but not as nice as that) – and I said it right there in the emergency room waiting room among about 100 witnesses. It sure got quiet all of a sudden in there, and to my amazement, Bitchy Nurse backed off and started walking out the room. But not without threatening to report me. It was probably the first time the waiting room patients had forgotten about their ailments that night with a better show than anything they could see on television.
I took the offensive that night again, which was another first for me. Rather than wait for her to start trouble I went straight to the charge nurse, a guy who I had always admired for his integrity and fairness. I told him exactly what happened, and that I thought I should go home because I really didn’t feel well, and I really didn’t want to slap anyone and end up in jail. I didn’t know at that time that I would never return to work in the ER. What I did know was that I felt that I had completely lost control of my actions, my confidence was gone, and I felt like a fish out of water.
Once in the safety of my own home, I recognized the fact that I was becoming more agitated which was causing my claustrophobia to worsen. Even being in a car too long would cause great anxiety, and I’d have to pull over so I could get out and walk around for awhile. Sometimes I would have to run out to my backyard because my house felt like it was closing in on me and I couldn’t breathe. (Up until now, I only had moderate fear of plaster casts, elevators, MRI’s and coffins). My counselor was providing emotional support, but only I could understand the true misery my body was experiencing. At least that was what I thought until I found a book written by two sisters; one had taken high doses of prednisone for a lung disease and the other was a doctor experienced in prescribing it. Their names are Zukerman and Ingelfinger and the book is called Coping with Prednisone: It may work miracles, but how do you handle the side effects?
This should be a book every doctor prescribes along with high-dose cortisone medicines. The book revealed that the intense mood swings, agitation, digestive problems, changes in my hair and skin and fragile immune system were all caused by my life-saving drug. It also gave food and exercise recommendations which would give me some relief from my symptoms. But what made me feel best was reading the personal experiences which were so similar to mine and how they were overcome.
So I spent the rest of the summer crying in my counselor’s office, trying to take care of my family, and working with different coping strategies. I looked forward to my life improving once nursing school began, but my optimism wouldn’t last long.
Cheers!
TPP
Avoiding Unstable People Who Want to Start a Support Group
There is a wonderful website, the source of some of my initial information concerning Cushing’s disease at www.cushings-help.com. I visited it today and found my biography which I wrote the summer of ’04 after the pituitary tumor was removed. Unfortunately, I find the site quite complicated to navigate, albeit informative, and I was unable to figure out how to update my old bio. It left off with me saying that I would love to get in contact with other Cushies in my state so we could start a local support group. “Whaddya think?” I eagerly asked.
The trouble with Cushing’s patients is that their symptoms vary and they don’t all have the same end result. Cushing’s causes different things in different people. The excessive stress hormone from Cushing’s causes fatal heart disease in some people, and diabetes in others. It can be associated with a number of odd glandular diseases with names like Acromegaly, Addison’s, Carney Complex, Nelson’s, Conn’s, PCOS, Prolactinoma and Rathke Cleft. Some people have severe depressive and/or psychological issues. Years of excessive steroids can cause thinning ligaments and joint problems. While Internet support is valuable, personal communication can be downright awkward because while we all had difficulty getting diagnosed, very few of us have identical issues.
For instance, take my endocrinologist’s other patient who was across the hall from me in the hospital. My doctor said that this patient was interested in getting a support group going, so I gave my doctor permission to have her call me. (I was still in the “Let’s have a support group – whaddya think?” mode). She was born in Italy and still had a thick accent and talked a mile a minute. It made it very difficult to understand her but she had experienced Dr. Nasty’s wrath which was comforting to know (in a sick sort of way). However, her boldness unnerved me. Just three weeks after surgery, she went with her family to Disneyland! (Remember the no bending over, no sneezing or coughing, no blowing your nose for three months rule?). I could barely walk from my bedroom to the kitchen at this point! I’m already thinking she’s a little wacky, when she tells me how Dr. Nasty had left packing in her nose, too, but yanked it out herself! So I’m asking her how she knew it was safe to do so, and she said something like “What’s the worse thing that can happen? If I need surgery again – so what?”
This should have been a big clue that this lady was definitely a “little off,” but I kept in contact with her for awhile. She would later have a cerebrospinal fluid leak (what a surprise) and need to be rehospitalized for repairs. She would also contact me to be at the bedside of new surgical patients of Dr. Nasty. Well, since it was two hours away and I still wasn’t feeling so great, I wouldn’t be able to go. But she didn’t understand that because she was on two different antidepressants, and some other medicine for being manic-depressant, and she felt great, so I should go on her medicines, too. She would call constantly with one-sided (her side) ramblings.
She did give me more insight on the damage Cushing’s disease caused its victims. Since the surgery I was experiencing a lot of nighttime anxiety, and finding the weaning off prednisone unbearable, so I contacted a counselor who could talk me through this recovery process. About the same time we had to get our phone number changed (for unrelated reasons) and I lost contact with her. And that helped me a whole lot, too.
Cheers!
TPP
Dr. Nasty Leaves a Souvenir
(This was previously entitled “What’s That Flapping in My Nose?” but my husband hated that title).
My days now consisted of trying not to bend over, sneeze or cough, and putting up with a terribly stuffy nose since I wasn’t allowed to blow it. I was able to spray saline around it and spent some time cheating and slightly blowing out of my nose. I also now had the task of carefully trying to reduce my prednisone intake week by week. It was a delicate balance, since I now knew what it felt like to either have too much of it or not enough, and either feeling was very unpleasant. Also, while having a lot of steroids in my body made me hungry, withdrawing from them made me nauseated, and eating was difficult. The thought of vegetables made me gag. So my eating regimen consisted of a daily peanut butter and jelly sandwich eaten in three or four sittings, and drinking Ensure a couple of times a day.
As I tried to clear out my nose with saline, I noticed a flapping sensation when I tried to breathe. Of course, at this point someone like me is going to be paranoid and start thinking things like, “Oh God! My brains are leaking out!” So on follow-up visit with Dr. Nasty Neuro, I would make sure that was a topic of discussion.
My first postop visit to Dr. Nasty’s office finally arrived, and I was prepared. My appointment was for 2:00 p.m., and I had a book and a lunch box with water, a PB&J sandwich and a bottle of Ensure. By 6:00 p.m., his medical assistant brought me back. I guess she was all dressed up for an after-work cocktail party, because she was the first medical assistant I’d ever seen in a low-cut slinky black dress. She had high heels on and her hair all done up. She told me that Dr. Nasty had been tied up with an emergency (of course), and would be with me shortly. At 6:45 p.m., the great doctor himself blessed me with his presence. Without any formalities like maybe asking hi, how are you feeling, he told me the operation had been a success and he had gotten the entire tumor out. Pathology report had revealed that it was entirely benign and I should be good to go. He did add that the previous MRI that was ordered three years earlier by a neurologist, and deemed “just a cyst – not worth following up,” really was just encasing the tumor, and it should have been further investigated at that time. He showed me the report which had advised the neurologist to take extra steps, advice which had been disregarded. (I remember being told at the time that having anything like that removed would have been a ghastly operation, hard to reach, and not worth the bother). Had it been followed up on, I could have been “cured” three years earlier.
So I finally got the nerve to ask him about the flapping in my nose – which was immediately received by a big smirk. He told me that he had gotten all the packing out, and there wasn’t anything there. (Remember the brain extraction?) I asked him to indulge me, and please look anyways. I sat on his exam table, he looked up my nose with a flashlight and said, “No, nothing there. You must be imagining things.” What a guy.
The flapping got worse. I looked up possible reasons for this on the Internet and found that most neurosurgeons used Ear, Nose and Throat specialists to assist them in surgery, but I knew Dr. Nasty had not. (He prided himself on doing the entire surgery without help). By now I was going out of my mind because the flapping was getting worse. I contacted a local ENT doc in town and he saw me right away. I was practically crying when I got to his office. He put on his head-gear with the big flashlight on top, put some really long utensils up my nose – and carefully kept tugging at something. When I opened my eyes, he was holding up about a foot long piece of tape-like packing. “Look what was in there!” he said. My first thought was “What’s a tape worm doing in my nose?” I was still creeped out when he told me what it really was, but very happy that I wasn’t “just imagining” things. So I wasn’t losing my mind after all – at least not this time.
Cheers!
TPP
Hospital Games
My crisis had indeed been caused by my brain surgery. The pituitary gland where the tumor had been removed was responsible for the regulation of several different hormones, one of which “tells” the kidneys to reduce urine output to make it more concentrated in order to keep your electrolytes balanced. Because of trauma to this gland, the hormone wasn’t telling my kidneys to reduce output. It also caused me to be very thirsty. So I was drinking too much water, and urinating in wild abandon, causing me to be waterlogged and sodium depleted. It took several days of intravenous therapy to get my body back in balance. But I wasn’t released immediately because of the risk of it happening again. I learned that this was not an uncommon phenomenon after pituitary surgery. So why did the other hospital release me so soon?
My roommate was now able to hobble to the bathroom, so we both had “hats” to pee in so the nursing assistants could measure our output. Our instructions were to leave the hat in the toilet until it was measured and dumped. I was still on restricted water input, so accurate measurements of my intake and output was crucial. However, our names were not on our hats, so there would be no way a nursing assistant would know whose urine belonged to who. It would sometimes take them hours to come to our rooms to measure the urine, and sometimes by then, the other roomie would have to use the toilet, remove the hat and set it on the floor. By the time the nursing assistant would get there, she would have two hats of urine and no way to know which hat belonged to which roommate. My roommate and I had a great time waiting to see how long the nursing assistants would fake like they were getting accurate numbers. It wasn’t until the end of the week that we would finally see that each had a hat with our name on it – probably the work of an overachiever nurse wannabe.
Another game we had was called “messing with the temperature regulator.” I was fortunate in that my roommate had the same kind of temperature requirements as I did – we liked the room cool. Most all of the time the nurses would enter our room complaining about how cold it was, and crank up the heat. We never said anything to any of them; I would just get up as soon as a nurse left, and crank the regulator back to the opposite side. The funny thing was that the nurses never asked us what we wanted. I guess they just assumed if they were cold, we must be, too. What was even funnier was that as many times as we kept turning it back down to cool, they never asked how it got that way.
The nurse that wouldn’t give me a paper bag the first night was definitely on my bad side, so I enjoyed flaunting that I could have anti-anxiety medicine every four hours for my whole stay in the hospital. It was fun to watch the clock, and buzz her for it as soon as it was time. When she was on duty, she also had a difficult time remembering to give me my prednisone. I enjoyed reminding her of that, too. She really wasn’t a very nice person, and to top it off, she had dirty fingernails. The bright spots twice a day were when my family doctor and her physician assistant would visit me. She reassured me daily that she was keeping close tabs with my endocrinologist.
It was the end of the 1st week of June 2004. The week of my second hospital stay in two weeks finally ended, and I went home with trepidation. I still didn’t feel like my feet were on the ground, and the butterflies were still in my stomach. I wasn’t jumping out of my skin anymore, but I definitely didn’t feel like my old self. I found it difficult to concentrate and worried about starting nursing school in August. Even though I had lived with Cushing’s disease for many years, with its highs and lows, I felt much more agitated now. (At least with Cushing’s I was able to blow my nose.) Weaning off high doses of prednisone would keep me constantly edgy, irritable and unable to sleep when I wanted to – feelings I would have to live with for another 3-1/2 years.
Cheers!
TPP
Back in the Hospital
When I got to my room, the admitting nurse tried to make me as comfortable as possible. But because of my condition, water restriction was ordered. And I was thirsty. Real thirsty. The nephrologists, (kidney specialist), then came in to have a little talk with me. I was dying of thirst, and talk would make me thirstier, and I’m very sorry now for being rude, but I was. I told him I just wanted my endocrinologist to be contacted – she would know what needed to be done. The kidney doc wanted to do tests. I had a gut feeling he was wasting his time, and I told him so. After telling him a little bit about my surgery, and yelling for my mother a number of times, he finally left. He said he would try to contact my endocrinologist.
As the night progressed a new shift came on and things got worse. Even though an IV bag of something was being pumped into my veins, I wasn’t feeling any improvement. As a matter of fact, an incredible feeling of impending doom was rising within me. I called the nurse, but the shift change had given me someone much less desirable than my previous nurse. She said she couldn’t give me any medication for my discomfort as there weren’t any orders written yet.
My anxiety was rising. Finally, the nurse came in and said my endocrinologist was on the phone. After begging her to help me, she said she didn’t have any privileges at the hospital I was in, which was 1-1/2 hours away. She would call my primary care doctor and give her recommendations on how to treat me. I told her I knew the nurse here was trying to kill me. She said I needed Ativan, a powerful anti-anxiety medication, but the orders had to come from my local doctor. I also needed a high dose of steroids, Solu-Cortef, as I hadn’t taken enough prednisone. I was experiencing a combination of system failures. In the meantime, she suggested I ask a nurse for a paper bag to breathe into so I wouldn’t hyperventilate.
I hung up and asked my nurse for a paper bag. Sounds like a simple request, right? Well, she stood there and glared at me, without bothering to check around anywhere, and said a flat out “No, I can’t do that.” And without explanation, she left me alone in my distraught condition. I was so scared out of my mind, I would probably have jumped out the window if I could just to stop the feeling (To this day, this was the worse case of anxiety I had ever experienced). And being treated this way ignited my desire to act out – which I did. I demanded to get a more comfortable bed (which I ended up getting). I cried and wailed. My panic escalated. The nurse came in and told me I would have to be quiet or she would get orders for restraints. Are you kidding me? Having worked in the hospital, I knew all about restraints, and that was the last thing I wanted. So she left the room, and as I stood near my bed, wondering how I could throw myself through the window, I heard, “She is such a bitch!”
With all my freaking out I hadn’t noticed the lady in the bed next to mine. She had her leg in traction. I told her how sorry I was: “I can’t help myself – I feel like I’m jumping out of my skin!” She said it was okay, and that maybe it would help if we just talked about it. But first, would I please turn the heat down in our room? It was pretty warm in there.
I knew where the temperature regulator was located and got up to turn the heat down. After hanging my IV bag on a pole, I walked over to where the temperature regulator was, but my vision was too blurry for me to see the numbers on the dial. This set the panic in motion again. My roommate apparently could see I was struggling, so just told me to turn it in the cooler position and forget about it. Being with her kept me sane that night, but I didn’t stop trying to get a sedative. The nurse gave me a lookwhich I was all too familiar with from my work in the ER. It was the look nurses reserved for patients they referred to as “drug seekers.” I knew exactly what she was thinking – that I was just another drug-seeking psycho. And she treated me accordingly.
I was so thankful when my family doctor came early the next morning. She had talked to my endocrinologist and ordered all the medication I needed, and wrote up the appropriate treatment plan. After climbing the walls all night, I would finally get some relief – and so would my roommate.
Cheers!
TPP
Complications
D-Day (discharge day) had arrived! My husband wanted to celebrate by taking me out to a restaurant in a very nice part of town. As we walked to the restaurant from the parking lot, I quickly realized that I had to think very carefully about my movements. I felt very uneasy and full of anxiety being in the restaurant with other people. I ordered a salad for lunch, but it felt very unnatural to eat it. I had been told living on prednisone was going to feel a lot different than my own natural cortisol, and now I understood why.
Being home didn’t give me the feeling of joy I expected. I was very irritable and paranoid, with butterflies in my stomach, and bugs crawling under my skin. I didn’t want to be alone, and I didn’t want to be with my family. I didn’t know what I wanted, but I did know that I was horribly uncomfortable.
By the second night home, things started to change. I had felt agitated sitting upstairs with the family noise and the TV on, so went to sit downstairs alone in the dark. A feeling of sleepiness came over me as I sat back in the recliner. The movement back in the recliner sent me into a sheer panic. I tried it again, and the feeling came back. I could not lie down. A scary feeling of disorientation started to come over me. With a lot of difficulty, I climbed the stairs to tell my husband about what was happening to me. When I finally reached him, my tongue felt thick and talking was difficult. I felt like I was slipping away. I knew what I wanted to say, but it wasn’t easy to tell him. I was extremely thirsty. Under his direction, I called my doctor’s office, and was told by the doctor on call to go to an emergency room.
On the way to the hospital, my vision was blurry, the lights all had halos around them, and I saw things in the road that weren’t there. The little rural hospital where I had worked as an EMT was a far cry from the neurological hospital I had just been released from the day before, but it was close by and my husband knew something really bad was going on. I had worked with the ER triage nurse, and although I couldn’t articulate what was happening, she knew I had just had brain surgery and got me help right away. A blood test would show my sodium level to be 113 – normal is 135. I had what was called hyponatremia, a dangerous metabolic disorder caused by a decrease in sodium in the water outside the cells. When sodium drops, water will seep into the cells to balance the water-to-salt level. The excess water causes the cells to swell. While most cells in the body can handle the swelling, the brain cells can’t because the skull restricts them. The swelling brain cells are what caused the altered mental status I was experiencing.
Before the blood test results were known, however, certain co-workers would have their own opinions about what was going on with me. A paramedic would be heard saying, “Wow, she sure is loaded,” meaning I had been taking drugs, or was very drunk. I may have appeared to be borderline unconscious, but I could hear every word being said about me. So the talking-about-patients-as-if-they-can’t-hear problem seemed to be widespread. (I would later get the satisfaction of belittling him for this)
The worst part of the ER experience was the doctor’s insistence that I have a CAT scan to rule out bleeding of the brain. She refused to hear my slurred explanation that this was probably caused by my brain surgery – from a previous endocrine disorder called Cushing’s. And then I saw the glazed look in her eyes – a look that would become all too familiar to me in the years to come. The CAT scan was ordered.
The poor CAT scan technician tried to get me to lie down on the table, but I couldn’t. IT FELT LIKE MY BRAIN WAS EXPLODING! I felt so bad for him, because he really wanted to do his job – but it wasn’t going to happen. He actually got angry and brought me back to the ER, complaining that I was “noncompliant.” Whether or not the ER doctor had already seen my blood tests I wasn’t sure, but had she known what the signs and symptoms of a sodium imbalance were, she never would have ordered the scan.
She finally came in announcing that I was being admitted to the hospital and would have to stay until my sodium level was restored to normal. I had let my husband go home since he had to work the next morning. Just before I started being wheeled upstairs, I heard my doctor say, “A kidney specialist will be up to see you to find out why your kidneys aren’t working.” I couldn’t talk, but I was screaming inside. My kidneys? No – you’re not listening to me. I’m sure it has something to do with the brain surgery I just had!
Cheers!
TPP
Discharge Instructions
After such a lousy morning a visit from my little Russian doctor was a welcomed relief. I told her about my disturbing visit from Dr. Nasty. His discharge instructions weren’t clear, but Nurse Know-It-All said something about not blowing my nose, and took my tissue box away. Although I was told these things were probably “touched on” before, I suppose I deemed them too unbelievable to take seriously. They included three simple orders: 1) No bending over for three months, 2) No blowing my nose for three months, and, 3) No coughing or sneezing for three months. Thank heavens I wasn’t being asked to do anything difficult.
This was another reason why asking a lot of questions before surgery would have been a really good idea. I also took this opportunity to ask about the big bandage on my belly. It turns out fat from my stomach was removed to plug up the hole in my brain where the tumor had been. Wouldn’t it have been a nice touch to wake up from surgery with a complete liposuction? I thought removing only a tiny bit of fat from my stomach was a really cruel joke.
The fat plug had a lot to do with these orders. No pressure was to build up in my head that would blow out the fat plug. To do so could release cerebrospinal fluid – the liquid that surrounds the brain and spinal cord. I was warned that if it did happen, I was to be rushed to the neurological emergency department immediately because it could be fatal. Thinking about having brain fluid drip out my nose and over my mouth seemed like one of the creepiest things that could happen to me.
My doctor also said that she hoped I would meet her other Cushing’s patient across the hall (the one whose medications we stole). I would forget to introduce myself before I left, but we would communicate at a later date. When I write about her, it will probably come under the category of “avoiding unstable people who want to start a support group with you.”
After my doctor left, one of Dr. Nasty Neuro’s residents came to see me. Since my nose was out of commission I had to breathe and talk from the same place, still feeling and looking miserable. I glanced up to see my new visitor – a young, surfer-like guy looking like someone you would see on Bay Watch. He said, “Dr. Neuro is very concerned about your progress and asked me to check on you.” I didn’t buy that at all. This guy was probably just looking for a way to legitimately avoid being around his merciless boss. He stood there at my bedside looking like he wasn’t sure what to say to me, and kept glancing up at the TV someone had left blaring that I was too sick to do anything about. Finally, he said, “At least you have the TV to watch – can’t do anything else, huh?” And without getting a response from me – on anything – he left. I laid there wondering why he came and most importantly, why he thought anyone in my condition would be enjoying the racket coming from the TV. He had apparently learned his patient-relations skills from Dr. Nasty.
The next day I received a visit from another one of Dr. Nasty’s residents – this time a tall, young woman who looked like a model. It must have been a requirement that all his people had to be very attractive. She said my tests showed that I was probably well enough to go home the next day, if I wanted to – it was up to me. The key words were “probably” and “it was up to me.” Unless a hospital is booting you out the door because the doctor knows you are ready to go home, and you are absolutely positive you know what your condition is, I don’t recommend leaving. Especially when the “probably okay” is said by someone other than your doctor. But I didn’t know about these lessons then. I thought leaving was a great idea. My husband would come the next day and take me away from this house of horrors. I couldn’t wait to go home! But I didn’t know about the likelihood of complications; something not in my discharge instructions. I had no idea that in two days I would experience one of the most frightening emergencies of my life.
Cheers!
TPP
Bedside Manners
Until day three, (or thereabouts), I had been fortunate enough to have had some very nice nurses. But my luck finally ran out. On this particular day a nurse walked in, sat down on a rolling stool, and wheeled herself over to my bed. It was a rather large room – two more beds could have fit comfortably in there. But still, if a nurse doesn’t have enough energy to walk from one side of the room to the other , should she even be there? So she crashed into the side of my bed and while still seated, leaned over, put her elbow on the bed and rested her chin in her hand. Chewing gum as she looked me over, she finally said, “You got too many pillows on your bed.”
“Excuse me?” Did I hear right? To tolerate sitting up in bed 24-hours-a-day required a pillow under my neck, one under each arm, and pillows under my knees – and she wanted to remove the few comforts I had. Her explanation: “Doctor’s coming today, and he doesn’t like lots of pillows.”
A pet peeve of mine is when health professionals (though it seems nurses do it more frequently) call a doctor “Doctor” as if it’s his first name instead of a title. Instead of “Dr. So-and-So”, or “the Doctor” they use “Doctor” as if the name belongs uniquely to this particular person. After all, you wouldn’t say “President has a press conference today”; rather you would say “The president” or “President Obama.” Right? In my book, this was strike two.
Too sick to protest, I watched as she started throwing my pillows on the floor. There was no way I was going to want to retrieve them now. Then she paged the front desk for a nursing assistant to take them away. She was still seated when the nursing assistant came and went, and Dr. Neuro came waltzing in. This was a teaching hospital, and he had an entourage of about six or seven residents with him, all diligently taking notes as he discussed the wonder they were about to see. He never greeted me; he just sat down on another wheeling stool and kept on describing the surgery to his doting fans. As he wheeled from one side of my bed to another, he never made eye contact and never talked directly to me, but he did start asking the nurse questions. This woman, who I had just met less than an hour ago, was talking like she had been with me the entire time. “Oh, she hasn’t been compliant . . ,” “She hasn’t wanted to do . . .,” “She feels like . . .” “Yes, I’ve been very concerned and tried to get her to . . .” Just like I wasn’t there (like my trip from the ICU) – and she didn’t even know what she was talking about! This was strike three, and another good reason to have an advocate with you in the hospital as much as possible.
I was still thinking, “Why is she still here when I just struck her out” when, without warning, Dr. Neuro wheeled to the side of the bed, grabbed a hold of the strings hanging from my nose, and yanked the packing out – along with my brains! But did he seem to care? No, he just kept on talking to his little group, gave the nurse some instructions, and left. He had just given his residents quite an education on bedside manners. Dr. “Nasty” Neuro was back.
I don’t know what happened right after that. I must have been in shock. I saw the nurse’s mouth moving, but didn’t hear anything. I was still suffering from the after effects of having the contents of my skull extracted.
Cheers!
TPP
The Postop Fun Continues
When I heard the familiar Russian voice, I thought I was dreaming. But when I opened my eyes, there was my doctor saying, “Where have you been? I’ve been looking all over for you!” Apparently, when transferred from the ICU, my name inadvertently was dropped from the computers and not reentered when I arrived at my new room – significant because this hospital was the size of a small city. Because of my nurse’s latest page to my doctor, she was able to find me. (The next day I would receive flowers which couldn’t be delivered because of my “disappearance”).
My blood pressure had dropped even further. My doctor smiled and patted my hand, and quietly said, “Well, looks like you’re in some trouble, but I’ll fix that.” Then she walked to the door of my room and yelled, “I WANT MY PATIENT’S MEDS –STAT!” I was in adrenal crisis, and needed prednisone right away.
There was some commotion outside my room. It seems that my meds were not available – they’d been given to someone else. Fortunately, my doctor had another Cushing’s patient across from my room needing the same medication and had some available. The cycle of taking other patient’s meds continued.
Once given the prednisone, it didn’t take long to start feeling a little better. I was able to talk again, and had an appetite. Prednisone is an artificial form of cortisol, the stress hormone which I had gotten used to having too much of in my system. Now with the tumor removed, my body had to readjust to the many changes that its removal had caused, (and it would take several years to do so).
So now that a crisis had been averted , my doctor had gone, and my nurse now had orders for me, I became aware of other problems that I was concerned about. What about the packing in my nose with strings dangling out over my upper lip? How long would it be there? And what was up with the bandage over my lower abdomen? I realized I should have asked my surgeon many more questions about this procedure before the operation took place.
I think it was the next day (although the days blur together) that I was denied food because I had an early morning MRI brain scan scheduled. (I would learn later that there wasn’t any good reason for the “no food” rule). So while I lay there starving, with tampons hanging out of my nose and gasping for air, with greasy hair and no makeup, in walked a glamorous family friend who I hadn’t seen in a long time. I don’t remember seeing her any more radiant than she did that day, and all I could think was, “how much more punishment can I endure?”
Then I told her I was waiting for my morning MRI. She seemed shocked, saying, “But it’s after 3:00 p.m.!” Well, I felt so helpless, I hadn’t even thought of asking about the hold up. But she did. She demanded to know what was going on from my nurses. “She needs food! We need to know when the MRI is going to take place – NOW!” (The need for an advocate obviously went beyond the intensive care unit). This resulted in me getting dinner, and an explanation for the MRI delay. So the moral of the story is: Beauty and results trump pride and helplessness.
About 10:30 p.m. the MRI technicians finally came and got me. They were a couple of really funny, young, good-looking guys who were very nice to me. They apologized for the delay (probably caused by lots of Dr. Neuro’s auto accident victims). When we got to the MRI room, I told them I was claustrophobic and the sedatives given me had probably worn off – and I just couldn’t do this. They said it would not be a long scan at all – only a quick one to make sure everything looked okay. One of them said, “And you won’t be alone; I’ll be right here, holding on to your feet, okay?” Believe it or not, it worked. It really wasn’t so bad. I just kept thinking about the heavenly foot rub I was getting; the nicest thing that had happened to me two days – so take all the time you want~
Cheers!
TPP
Postoperative Nightmare
After what seemed like eternity (when it probably was only several minutes) a young female nurse finally arrived. She said that her other patient in the next room was very ill and she was very busy. What was it I wanted? All I could mutter was “thirsty.” Several minutes later she returned with manna from heaven – a cup full of ice chips. As she started to leave, I asked her to wait. I certainly didn’t want her to go away so fast when it had been so hard to get her in the first place, but she couldn’t stay. “Your vital signs are much more stable than my other patient’s – I’m more concerned about him right now,” and that was the end of that. Too bad a measure of “sheer terror” wasn’t a vital sign.
When I woke up again, I wanted more ice, so with the call button now within my grip, I rang for a nurse. Once again, no one came. I was a little more cognizant of my surroundings, and looked outside my room which had a view of the nurses’ station. There was no one there and it was very quiet. Was I in an episode of the Twilight Zone? A long time passed before a male nurse came in and barked, “What is it?” I was able to speak a little this time and said, “Ice chips, please.” He said that he was covering double rooms because half the staff was in a meeting, and he’d get to it when he could. What was this place?
I did get my ice chips eventually, but not with a smile. My nurse was not happy. When he came in later with a female nurse, they turned all the lights on so I closed my eyes. They must have thought I was sleeping, as they started talking about me like I couldn’t hear. (This wouldn’t be the only time health professionals would talk about me like I wasn’t there). They packed up all the equipment and started wheeling me away. They were saying, “Why do we have patients like this anyways? All they do is take up room. Why was the meeting scheduled for this morning? She didn’t belong here. She’s too stable to be here. We got better things to do. She belongs in . . .” And that went on and on until I was finally delivered to my room.
A very nice nurse was assigned to me in my new room in. She said she hadn’t heard from my doctor and didn’t have orders yet, but she’d get me something to eat and drink. I told her I had to go to the bathroom first. My vision was blurry and I felt dizzy. I couldn’t focus on the blood pressure monitor reading, but was told my blood pressure was low, and she would get help getting me up. Soon a nursing assistant had arrived, and said it was time to get me cleaned up and my bed made. Another male staff member appeared and helped the nurse get me to the bathroom. As I got out of bed, I heard the nursing assistant gasp – “Oh my God!” I looked at the bed and there was blood everywhere. What the – - – -? I thought I had BRAIN surgery!
As the nurse and her male assistant got me to the bathroom, backup was being called. There was too much blood for just the A-team to clean up. Janitors came in with their bio-hazard gear and disinfectant. More nursing assistants came in completely covered in protective clothing, including protective booties, goggles and head covering. I felt like I was going to pass out any second. When I finally landed on the toilet, I noticed a big bandage on my stomach. So I repeated, what the – - – -, I thought I had BRAIN surgery! But the nurse determined the abdominal wound wasn’t the source of the blood – apparently the bleeding was from the “nether section of my body,” there had been “rebooting of my ovarian system” or whatever other euphemism you want to use for Mother Nature’s visit at “that time of month” – only with a vengeance.
After going to the bathroom, all I wanted to do was lay down. But anyone who has ever stayed at a hospital knows that good nursing assistants can be militant in their drive to do their jobs – nothing stands in their way. So as I stood there practically naked, trying to get in my bed with half of the hospital staff in my room, the argument escalated:
“We have to get you cleaned up, first!”
“I don’t want to be clean!” I cried. “Please, just let me lay down!”
“No! We need to finish making your bed!!”
At that point, I didn’t even care if there weren’t any sheets on it. I just wanted to lie down. The nurse finally interceded and allowed me to get into bed under the angry protests of nursing assistant-in-charge, “But we didn’t finish – she needs a draw sheet . . .” I couldn’t speak anymore and I was struggling to keep my eyes open. I glanced over at the nurse who looked very concerned as she read the blood pressure monitor. She paged my doctor again. My vision had cleared a little bit and I was able to see it, too. My blood pressure wasn’t anywhere near the normal 120/80 – it was something like 65/48. What happened to our plan? Nothing was going to go wrong! Where was my doctor?
Cheers!
TPP
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