The Second Time Around – Not So Lucky – written by Jan Judge used with permission
How many times have you said,” Think I am losing my mind?” Well this actually happened to me! Good news is that it was only temporary. It was medicine induced, and I have completely recovered. However, at the time it was happening, I was not sure how things were going to turn out.
I had my first total hip replacement for my left hip in July of 2003. I have to admit it was a breeze. I was in so much pain prior to surgery that I felt like a totally new person. I still had pain in my right hip but the surgery went so well, I was counting the days until the second hip surgery. My physicians were surprised at how well I did considering my other complicated medical problems. Some of you may have read my other articles. I am a physical therapist and have Addison’s disease. (See articles in the PT Advance articles volumes 14, Numbers 14, 21, 22). After my first hip replacement I had a three day hospital stay and seven days in rehab. By September I was able to walk one mile with the new hip. I felt I could walk further, but I was restricted by the pain in my right hip.
In October 2003, we decided it was time to replace the right hip. I was in considerable pain and it was holding me back from walking and exercising. Things were very different with this surgery. I was the first operation scheduled at 9 am. When I arrived in pre-op, I found out that there was a case ahead of me. I had the nurse notify my family because they were expecting me to be out of the Operating Room before I actually got in. The anestheologist was relatively new at her profession. She attempted to put in a spinal seven times before she got it right. I underwent a severe decrease in confidence. I experienced a rather severe asthma attack two days prior to surgery and still had some slight wheezing prior to the Operating Room.
I was a little anxious as I was finally rolled into the operating room, but I had full confidence in my orthopedic surgeon. My friend, who is a music therapist, prepared a relaxation CD that was played in the Operating Room the last time. The staff put the CD in this time while I was still awake. I was hopeful that this experience would be as successful as the first.
My endocrinologist was wonderful as usual. He contacted the anesteologists prior to the surgery to make sure they knew about the Addison’s disease and he gave specific instructions concerning the dosage of medicine to administer. The orthopedic surgery went extremely well. The orthopod had to lengthen some of my muscles to insure my legs would be the same length. This all went as planned.
The day after surgery, the physical therapist and I walked in the hall. I was receiving a large dose of intravenous steroids to cover the Addison’s disease. When you have Addison’s disease your adrenal gland does not put out enough cortisol to cover your body’s needs in stress situations such as surgery or walking after surgery. I was feeling pretty good; I had some pain after surgery because the procedure was more extensive, but walked about 100 feet. That night, my roommate had some type of psychotic break and they had to change my room. This was a bit unsettling. The next day, the social worker came in to tell me I was too good to go to rehab. This greatly upset me. I was not able to walk as far the second day because of pain and the decreasing steroids. This caused me a lot of stress and I began to go into an Addison’s crisis, which required more steroids. My orthopedist said that not going to rehab was not an option. I arrived in rehab on schedule three days post-op.
The endocrinologist and I are not quite sure what happened and it was no one’s fault. I felt that I was having more Addison’s crises. Once I was in rehab things seemed to snowball from there. My body was indicating and showing signs of going into a crisis but my vital signs indicated otherwise. My personality took a complete change. I became nasty, suspicious and confused. The rehab sent me back to the hospital where the symptoms were getting worse. I felt like I could not move my arms or legs. I could hear people talking and asking me to do things but I was unable to respond. I don’t know if I can adequately describe what a horrible feeling it was not to be in control of your mental facilities. In my mind, I felt that I knew everything that was going on. However, I kept drifting in and out of consciousness.
Sometimes I understood what people were saying and sometimes I never heard what was being said. It is a terribly degrading experience to not know what was going on and thinking that you did. It was especially traumatic for me to hear some of the things I said and did during this time. Luckily, after the diagnosis, most of my friends thought it was pretty funny because they knew it was not my personality at all.
After a myriad of tests and the doctors keeping an eye on my condition, it was determined I was suffering from a steroid induced psychosis. Unfortunately, the symptoms of having an Addisonian crisis and steroid induced psychosis have some of the same symptoms. I had tremors, slurred speech, and the feeling of not being able to move. I also experienced the severe exhaustion. The incidence of this happening is 10% of those taking steroids. The incidence of getting pituitary adrenal insufficiency (secondary Addison’s from taking high doses of steroids) is 1 out of 100,000. I am guessing I am just a lucky person.
While in the state of steroid induced psychosis, I do not remember anything that happened for the two weeks. From the stories my family and friends tell me, I was not a great person to be around. I got imagined things confused with reality and could not always separate the two. This was very hard on my husband and parents. Everyone felt that it was reversible, but at times I doubted it.
Another odd phenomenon happened the day that the psychosis was at its worst. I felt like I was “fading”. It was a feeling like I was losing consciousness.
My doctor called for the house physician to come and check me out. My vital signs were good. I could hear what he was saying but could not move my arms or legs. He was doing a deep pressure test for pain by pushing hard on my fingertips and he ran the handle of the reflex hammer up and down my feet. I could barely feel it. The next day, it was determined that I needed a blood transfusion. During the transfusion they have to monitor your temperature and blood pressure every 15 minutes. Every time the blood pressure cuff inflated, the pain on my arm was so intense I had to have my husband take off the cuff. It was the strangest thing. I went from not feeling pain to being hypersensitive to pain.
I tried to do physical therapy in my room with the therapist but I was too weak to do anything. I was put on bed rest. After a few days, my hip started to feel tight, so I started receiving passive range of motion exercises bedside by the therapist. After being on bed rest for a week, I was then sent back to the rehabilitation center. I was now thirteen days post-op.
Even though the steroid dose was halved immediately after being diagnosed, I was still having mental confusion. I could not tell what was real and what was not. I went to rehab in a mental state of limbo. The endocrinologists were steadily decreasing my steroids but they needed to give me enough to participate in therapy. This is a very tricky process. Even with the cut in the steroids, when I was tired or too low on cortisol the symptoms of the psychosis came back.
When I began physical and occupational therapy I requested a break between the two therapies to rest. At first because of scheduling problems, the therapies were scheduled back to back. This turned out to be a disaster. I could not focus on instructions or even tell my right from my left. After this problem was alleviated, I spent the times between meals and therapy in bed.
Also when I was in rehab I began to have hallucinations. Another complication of the psychosis, it was not severe but scary. The ceiling tiles had dots on them and I imagined that they were ants crawling out of the ceiling.
You cannot imagine how hard it was to complete rehab in this state or lack of state of mind. Add to this the Addison’s, which creates exhaustion with minimal activity, and my progress was painstaking slow. Some of the same therapists were there from my first surgery and knew I was a hard worker. I felt that others thought I was completely out of my mind. I know I sometimes acted it but it is a horrible feeling. I can imagine other patients with mental problems must experience this. As therapists, we need to be compassionate to all because we may not be able to judge what is going on with them either medically or mentally.
I would like all the therapists treating mentally challenged patients, either through a stroke, brain injury or as in my case medication inducted, to be sensitive to the lack of control these clients have. It is so easy to dismiss a client’s lack of motivation or understanding as being non-compliant. It only takes some time for the therapist to find out why the client is acting that way and if there is a medical reason for it. I am sure not many of the therapist’s at the rehab center encountered many people with a drug induced psychosis. Some of the therapists understood and others provided me with tasks that only frustrated and upset me. I knew intellectually that I could have completed the tasks they gave me, but with the psychosis I could not accomplish them. I also required repeated directions with things and as busy as we are as therapists, compassion and understanding is a must.
I developed bronchitis a few days prior to discharge. This added to my complications. I was discharged on antibiotics. At home, I developed severe diarrhea and was on complete bed rest because it was depleting my electrolytes. My prednisone had to be increased. The home physical therapist was coming twice a week, but I was unable to comply with most of the exercises.
After three weeks of home therapy, I had my return visit to the Orthopod, and he was not happy with my progress compared to the first surgery. He realized this was due to all the complications. I was not able to walk without my crutches. I was ordered for more home physical therapy and was finally progressing when I developed the flu. This put me on another week of bed rest.
After recovering from the flu, I attended out patient physical therapy for six weeks. This again was an extremely slow progression. I was severely reconditioned and had significant muscle weakness in my right hip. I finally graduated from therapy and was able to walk more and do my exercises at home.
Five months after the second surgery I am now able to walk without any assistive device and on a good day walk a ½ mile. I am continuing to decrease the dosage of my prednisone and still try to maintain a good exercise program. It was such a frustrating situation all around. It took almost six weeks, for the majority of the mental symptoms to subside. Whenever I was tired or adrenal insufficient, the symptoms would return. I wondered if it was ever going to go away permanently. Happily, it did. Rehab wise I was constantly evaluating my progress or lack of it based on the first surgery. I was about 3 months behind in my progress due to the complications.
Orthopedically, my hips are doing great. I have no pain and the only physical restrictions are no jogging or running. The Addison’s is there on a daily basis. I have good days and bad days and have to listen to what my body is saying that day. Long term plans are to keep decreasing the prednisone until I am completely off of it then wait six months to see if my adrenals will start working. At this point, there are no guarantees. I may be steroid dependent for the rest of my life. With the help of my fantastic endocrinologist and allergist, and my new hips, I am aiming at being back on the softball field by 2005.
Jan Judge, who has been diagnosed with Secondary Addison’s Disease, began another taper from prednisone on January 7th, 2005. She gave up her position as a physiotherapist due to ill health. Jan is the coordinator of the NJ/PA Support Group and has written a number articles including this one that have been published in the “Physical Therapy Magazine”. Jan graduated with a Bachelor of Science Degree in Physical Therapy in 1978 from Temple University, Philadelphia, PA.
For additional information:
Please feel free to contact Jan at: JanPT@aol.com
Or the NADF at: The National Adrenal Diseases Foundation
505 Northern Blvd.
Great Neck, NY 11021