It should be noted that I provide only information and do not endorse any recommendations that the I give herein, nor does it recommend any particular treatment. The treatment used should always be selected by the patient and his/her doctor.
Sooner or later, everyone interacts with the health care system. I propose to tell it like is has happened to me. This idea came to me while I was in the hospital recovering from a radical prostatectomy. It is intended for a wide audience, but especially for physicians.
I have been involved in the health care field as a physician providing direct care to patients (31 years as an ENT, 2 years as a general medical officer (prior to my specialty training) in the U.S. Air Force, 5 years as a physician in training), a physician working as a Medical Director for a managed care company (9 years working for Prudential HealthCare, MetLife Healthcare and Aetna Healthcare), and the last 5 years working for the Veterans Administration. I am now a patient in the system, having retired from the VA. This gives me a total of 47 years working in some part of the health care delivery system. I am a direct person, and will have little left unwritten. My intention is to inform, not make any disparaging remarks or unkind statements. I am a third generation Texas physician, fourth if you take into consideration my mother's side of the family too. I greatly respect the role of the physician in the delivery system, and admit my bias. I think my personal experiences have made me much more compassionate with my patients. I also better understand things that are wrong with the delivery system from a patient's point of view.
Memories from my childhood do not last well, especially those that are somewhat unpleasant. I remember we listened to the radio in the car on the way to the clinic where I was to have my surgery. It was D-day 1946. Young people will need to know that at that time, kids died from the results of tonsillitis as this was before antibiotics. Penicillin was available in small amounts for use in the armed forces. Sulfadiazine was available, but not widely used.
My dad had a satellite office in a small medical building where there were several physicians. The doctor who owned and operated the building was an EENT. He did minor surgery in his office, the common practice of the time. We are returning to this method slowly, mostly because the insurance companies are reluctant to pay for surgery done in a doctor's office/clinic at the same rate as they do for a hospital. Billions of dollars are wasted because of their short sightedness.
I don't remember my T&A as a big deal. I remember breathing funny smelling stuff (ether) and then remember having a sore throat for a few days, but not worse than those experienced with infections.
I began having pain in my right ankle when I was in college. One of my friends ran track, and he invited me to run with him. After trying to run around the track once, my ankle killed me the next day. In my last year at Baylor, my mother was diagnosed and treated for adenocarcinoma of the stomach. She had surgery at the Mayo Clinic. My dad asked me to come to Rochester to stay with mom so he could get back to work. I left college about a month early (April 1957) and went to Mayo's. Mother recovered from her surgery without much problem. While I was there, my dad asked me to see someone about my bad ankle. A diagnosis was made of a rigid flat foot. I had been turned down by the Navy for a flat foot.
As I got older, my ankle became more and more painful. When I was a general surgery resident, if I had to stand several hours during surgery, I needed help from a cane to be able to walk the next day. This is one of the reasons I chose to be an ENT doctor, as most of the work could be done sitting down. During my last year of residency I had surgery on my ankle, performed by the chief of orthopedics at the medical school. It was quite an experience. I started my medical practice in July 1968 in a cast.
One of my favorite "medical" stories is about my experience the night after surgery at the local county hospital. Some time during the night, my foot fell off the pillow that was keeping it elevated. I had so much pain from the bone graft taken from my right pelvis that I could not lift my foot. I called for the nurse and asked her to help me get my foot back up on the pillow. Unfortunately, she spoke no English. This was time of nurse shortages, and nurses were recruited from around the world. This nurse was from the middle east. After a short while, she came back and gave me a pain shot. I went to sleep, only to wake up again after a few hours with my foot still off the pillow. I called the nurse again, and the same thing happened, another pain shot but no help with getting my foot back on the pillow. When my room mate's girlfriend came in the next morning, she put my foot back up on the pillow. It was an interesting arrangement for my room mate. His girl friend came each morning, helped him shave and clean up. His wife visited him each evening.
I continued to have a lot of pain after surgery. The orthopedic doctor offered me more surgery. I chose to see one of my medical school and college classmates who was a rheumatologist in Tyler. He injected my ankle with steroids and it helped a lot. He recommended warm paraffin baths and I slowly improved.
As years went by, my ankle became more and more painful. I remember in 1994 having a lot of pain after playing rounds of golf. This was at the time we moved to El Paso, and I quit playing golf. My ankle continued to cause me trouble to the point that I could not walk two blocks without having pain. More about this later.
I was working with my bird dog in the driveway at home. The dog was on a lead and we were working with basic commands: whoa, sit, heel, come. I turned around on my right foot, felt a snap in my knee followed by pain. That weekend, we were to go on a field trial, and riding my horse was a problem, as bowing my legs around the horse intensified the pain. Being optimistic, I waited for things to resolve. After three months without any significant improvement, I sought medical help.
I chose an orthopedist with an excellent reputation in knee surgery who was also on the leading edge of arthroscopic surgery, which was quite new at the time. I still remembered how much pain my older brother had after open knee surgery. The surgery went well and I had considerable rehabilitation to do, as I had a lot of muscle atrophy as the result of living with the injury for several months. As I look back on this event, delay caused nothing but more problems.
My first (and last) experience with spring skiing resulted in an injury that would plague me for a long time. I was making a slow turn in wet snow and heard and felt a loud pop in my left knee. I had torn the hamstring tendon as it inserted into the knee. I sought care from my orthopod when I returned to Dallas and he suggested a period of watchful waiting. When I was still having pain after several months, he scoped my knee only to find non-specific joint inflammation.
My left knee still hurts to this day, especially after standing still for a while. I have pain also when I walk. It has caused me to abandon golf and walking, my two great loves and principle exercises.
I had been dealing with urinary symptoms for a number of years. I had been taking some kind of alpha blocker with some relief, but not total. I went to a urologist to see if one of the newer office procedures might be of help. As part of the workup, I had a digital rectal examination (DRE) that was normal, a sonogram that was also normal, and a repeat of my Prostate Specific Antigen (PSA). I had been having PSA's done annually for about ten years, or soon after the test became available. My PSA had been elevated from the beginning, but less than 4. This PSA test came back 6.2, quite a jump from the previous level. My urologist told me not to worry as my exam was normal. I got a second opinion. This led to a needle biopsy and a diagnosis of "early" adenocarcinoma of the prostate. The needle samples were negative on the right side of the gland.
I did considerable research on the Internet and with the help of my new urologist, who is quite knowledgeable about this disease, I decided on a course of therapy. My doctor had urged me to consider brachytherapy (seed implants). I was reluctant, as if you have radiation as your primary treatment, then surgical options for recurrence are limited. I chose to have a radical prostatectomy to enable us to stage the disease more accurately.
It turned out that this was a good choice, as there was penetration of the capsule of the gland on the right side, where the previous needle biopsies were negative. It was recommended I have post-operative radiation to kill residual tumor cells. Pelvic lymph nodes were negative, and my CT scan and bone scan revealed no visible tumor spread.
My radical prostatectomy surgery went well. The doctor was pleased with the procedure and could find no clinical evidence of disease outside the prostate. The surgical procedure took about two hours. I spent a while in the recovery room, but have no memory of anything after receiving Fentanyl in the OR by the anesthesiologist. I don't remember returning to my room on the floor. I do remember the pain in my belly when I finally woke up. After getting an "extra" dosage of morphine, I felt better. The pain was still there but I didn't care as much. The first 24 hours after surgery went well, and I had little memory of most of it. My memories really started the morning after surgery when I was expected to get out of bed and sit in a chair.
The engineer who designed the hospital bed never spent any time in it as a patient with a sore belly. The mattress was so soft you could not "scoot" around. There was nothing high enough over your head to grab to help you move. The bed rails were split, but not in the middle of the bed where humans usually enter and leave. You had to scoot down toward the foot of the bed to be able to get out around the upper rail.
I felt pretty good on the second day. I was able to enjoy visits from several people and talked on the phone to others. I was not taking anything by mouth (NPO) other than ice chips. I was getting plenty of fluids by the IV route. I gave myself a dosages of morphine with the PCA (patient controlled administration) button when I felt I needed it.
The third day I got up out of bed and took a walk in the hall with the assistance of a nurse. I did better than I expected. In the afternoon, the fun began. I started having intense back pain and muscle spasm. This was my old friend that started when I was a child and had intermittently hit me since. I have never been able to stay in bed longer than 7 hours without having back pain. I typically get low back pain in the evening that is relieved by lying down. This pain was not low back, but had a trigger point that felt like it was under my left shoulder blade. The pain was triggered by moving any part of my body. It felt like I was being hit with a cattle prod. The morphine did not seem to give any relief. My doctor does not typically make rounds in the evening, so I was unable to communicate with anyone other than the nurse. About 10:30 PM the pain was so severe, the nurse called the doctor on call who prescribed one muscle relaxant pill. About midnight, I thought of calling my wife as I though I might not live until morning. I was unable to take a deep breath without triggering the pain. The back pain completely overpowered any belly pain I had. I finally got a little sleep from 2 to 4 AM.
This is the "quiet time" in a hospital. Other than these hours, there was someone in my room almost every hour. The hospital uses the "team" approach. One person cleans the room, another person takes vital signs, another person changes the IV's, another person gets you out of bed, changes the bedding and offers to assist you with a sponge bath. A variety of people empty the catheter bag. I reminded them frequently with the IV was out or the bag was full. I hope they enjoyed my reminders. The nurses were good and I had good care.
When my doctor showed up the third morning after surgery, I told him I was dying. He immediately was concerned that I may have had a pulmonary embolism (PE). He also mentioned I could be having kidney pain from a blocked ureter. I was convinced it was nothing other than my chronically recurring back pain. He got an internist involved who ordered some tests and recommended an ice pack to the trigger point. I have always used heat, and had been using a heating pad for the last twenty four hours without relief. The ice was miraculous....within 20 minutes the pain resolved and I could move a little without setting it off. By this time, I was sitting up in the chair, as I could not stand to be in the bed.
To satisfy everyone that I had no PE or blocked ureter, I was carted to X-ray in a wheel chair and had a chest x-ray and a kidney sonogram. A technician did a Doppler leg vein study in my room. All of the tests were OK. The bad back was the culprit. I also was having fluctuating temps because I was unable to breathe properly. I was started on antibiotics. I was offered Keflex, which I refused due to my penicillin allergy. They started me on Levaquin.
I asked the nurse to find me a recliner to use, rather than get back into the bed. They were unable to find one (hard to believe that there is not a recliner in a 600 bed hospital somewhere), and my wife with the help of my best friend brought my trusty recliner from home. The recliner and the ice pack saved my life. I used the ice about every two hours for the rest of my hospital stay.
About this time, I started passing gas. The doctor recommended a Dulcolax suppository to get things moving. It worked, but I was unable to get someone to respond to my call button to assist me in getting to the bathroom. I lost part of the paltry contents of my rectum in the floor on the way to the bathroom. I had nothing to eat by mouth since Sunday, and after drinking a gallon of Go Lightly, there was nothing left in my bowel. I did pass considerable gas. I was still NPO and using the morphine. On the fourth day, nothing much happened. I continued to get up and walk, the back pain was better, and my bowels continued to growl and I passed a little gas. My doctor did not show up at all that day. He did call me from his car about 6:30 PM. I suggested we try some food and different pain medication. The morning of the fifth day, the nurse removed my IV (with considerable encouragement from me after she was unable to move it to a different location), started my on oral pain medication and clear liquid diet. The doctor suggested another Dulcolax suppository, which I gently refused telling the nurse the story of the previous one.
The morning of the sixth day I had real food....bacon, eggs, biscuit, juice, coffee, milk and all tasted very good. The doctor on call for the weekend came by, and I asked him to look at my drain, as the site around the drain was very red and inflamed. There had been little drainage for several days. He removed the drain and gave me discharge orders to go home. My wife transported my trusty recliner home with the help of our son, and I was free....except for the catheter.
Getting home felt good. I continued with the ice treatment and stayed in the recliner for the first night home. My back was better enough by the second night to get in my own bed. We have a wonderful bed at home. It adjusts like a hospital bed and has a mattress that is semi-firm and conforms to your body.
The next two weeks had my mind focused on a very localized area....my urethra. The catheter has a way of exposing the urethra and it rubs against the absorbent pad every time you move. As a result, I chose to move as little as possible. I did some walking, but discovered if I held the catheter as still as possible, the pain was reduced. I continued to improve slowly, have less belly pain and became more mobile. The majority of the pain by this time was associated with bladder spasm. This was intensified with each bowel movement. I continued to take Metamucil to keep my stool soft to avoid straining, which was painful. I was waiting for the day when the catheter would be removed.
My doctor had cautioned me when I was in the hospital that if the catheter comes out during the first week, it requires a surgical approach to replace it. When I went for a visit to his office during the second week, he offered to remove the catheter, but warned it might have to be replaced. I decided to hold out for his traditional three week period and left the catheter alone.
Leg catheter drainage bags are poorly engineered, at least the one was they fitted me with when I left the hospital. The bed bag has a vent in the tubing that allows better flow into the bag. The leg bag has no vent, but has a one way valve in the inlet. It just doesn't work as well, and during the times I wore the leg bag, I seemed to leak more urine beside the catheter than went into the bag. As a result, I wore the leg bag only when I had to. I felt OK and could have been more mobile and left the house more often if the leg bag functioned better. I could not imagine trying to get back to work wearing a leg bag.
My first venture outside my house was to walk a block to a neighbor's house to help her with her computer. It went OK.
My small group (The Gray Panthers) was great to me. This group meets weekly for dinner, fellowship and Bible study. I helped organize the group more than fifteen years ago. The Panther's came to my house the first Thursday night and the meeting went great. We had the usual popcorn, cold drinks and as an added treat, Jane put out Hershey bars that were a hit. We continued our study of the second chapter of Hebrews. The next week was my first social venture outside the house and one of the guys picked me up and we went to our usual meeting place, The String Bean restaurant on Coit road. We had a good time, and I handled the travel fairly well. We worked on the third chapter of Hebrews.
The day came for my three week visit to the doctor and the proposed removal of the catheter. I had a voiding cysto-urethrogram to assist the doctor in seeing how I was healing and if there was any extravasation (leakage) outside the bladder. There being none, the catheter was removed. The doctor said it would take a few weeks to regain control over my newly recreated sphincter and bladder neck. He liked what the X-rays told him.
The first week without the catheter was a totally new experience. My bladder was still very reactive and did not hold much until I felt the urge to urinate. I usually did not make it to the bathroom and went through a number of "Depends" for men. I did better at night. I seemed to be OK when lying down or sitting perfectly still. Movement resulted in a need to urinate associated with urgency. I told myself that there must be considerable raw area in my bladder neck and urethra that needed time for healing. I was also on an antibiotic for the first five days after removal of the catheter. I progressed slowly and became frustrated. At least I was not dealing with the pain as when the catheter was in place. I slept poorly, waking up about every two hours with the need to urinate. I am a terrible sleeper anyway, and most nights would be wide awake about the third time I had to get up. I tried to make up for my lack of sleep by taking a nap after lunch. Each night seemed to be better then the previous one. Last night was the 6th night after the catheter came out, and I was able to get back to sleep and did not get up until 6:30 AM.
When we were living in El Paso (1994-97) I began having pain in my left knee. For some reason, I did not seek medical care. I figured it was just more wear and tear. The knee became more and more painful and about 2004 I began searching for an answer. I thought I was a candidate for a total knee replacement.
I went to see a very experienced orthopedic surgeon whom I had known during my time in practice at Medical City. I was having chronic problems with both my back and knee. He did not do knee work, and recommended a doctor who did Synvisc injections, as he thought this might be of help to me. I had a visit with this doctor, my first and last. I had made an appointment well in advance and showed up early only to wait two hours before seeing the doctor. I learned that he had not communicated with his office of another commitment. My gripe was that no one in his office came out to the waiting room to let everyone know why the doctor was running late.
About a year later, I went to see another doctor about my knee. He did not think my symptoms were compatible with his physical and the CT x-ray findings. He said he was reluctant to offer me surgical treatment, as he did not think it would help. I sought another opinion. This doctor ordered a MRI and told me I had a torn cartilage. I had surgery and immediate improvement in pain. My knee continued to feel weak compared with my right. I had trouble with steps, both up and down. The MRI said I also had a torn ACL that explained my loose joint issues. I was too old for an ACL surgical repair. The fix was a total knee. He did offer me a trial of Synvisc and I had an injection. A few days after the injection my knee became very painful and in the middle of one night, I was unable to get out of bed by myself. My arms were so weak I could not lift them to get a coffee cup out of the kitchen cabinet. I could not get up off the commode without great difficulty. We had previously installed a higher than normal toilet and grab bars which helped a lot.
I called my internist with the new symptoms, and over the phone, he diagnosed me with polymyalgia rheumatica (PMR) and started me on a steroid dose pac. Within 24 hours of starting the steroids, I had a miraculous recovery of my muscle weakness and pain. My father used to tell a story about the first patient he had treated for pneumonia with penicillin in 1944 and her dramatic recovery from near death. My recovery from PMR was the most dramatic thing I had seen in my medical life.
I went for a follow up visit with the orthopedic surgeon. He said he had never seen this kind of reaction to Synvisc. I elected to not have the second injection!
My internist recommended I see a rheumatologist. I started making calls. The doctor he recommended did not take patients with insurance. It was cash on the barrel head! I called a doctor at the medical school recommended by my wife's pulmonary specialist who could not see me for three months. The administrative assistant I worked with at the Bonham VA clinic recommended a doctor who had seen her son. I called his office and he was not accepting new patients. The assistant got on the phone and got me an appointment. This doctor saw me and helped me a lot. I am now more than two years beyond this illness and hope I never see it again. I was on systemic steroids for a year and non-steroidal medicine for a year.
During a visit to California to visit friends in January of 2008 I was unable to walk around and enjoy the weather. I made a decision that I did not want to spend the rest of my life not being able to walk. I was having almost constant pain in the ankle, even if I did not walk. I sought consultation from my wife's foot doctor in 2006 who offered me a steroid injection. I elected to continue with the pain rather than temporary relief from steroids. As part of my knee workup a the doctor's PA recommended I see their foot and ankle doctor, which I did. He put me in orthotics. It immediately helped my right knee and hip pain. I used the orthotics for the next two years, but they were not the answer for my ankle pain.
I did get temporary relief of pain from a steroid injection in the fall of 2007. We took a trip that involved considerable walking and it helped a lot.
After my California experience, I returned to see the foot and ankle doctor and asked what more could be done. He recommended revision surgery of my ankle. He said the problem with my first surgery 40 years ago was they only gave me a 30 year warranty. I asked him what kind of warranty he would give me, and he said 30 years. I think this would outlast me! I elected to have surgery. Time had partially erased the misery I experienced from the original surgery. The surgical experience was good. I had a local nerve block that kept me mostly pain free. The problem has been the recovery. I spent two months in a cast and the last month in a walking boot. When the cast was removed, we found a had a significant wound dehiscence. The incision was in the old scar and it did not heal. We began daily dressing changes with little improvement. It seems the more active I am, the more it drains and fails to heal. I saw a surgical friend who looked at the wound and found exposed bone and tendon. He recommended I see a plastic surgeon for a skin graft procedure. Needless to say, my wife and I were discouraged and disappointed.
A couple of days later, I saw my orthopedic surgeon who immediately said I needed to have the wound surgically treated, which he did later that day. He removed dead tissue and a tendon that was running across the lower margin of the wound. It was to provide lateral motion to my foot, and as my foot was fused I no longer needed it anyway. He agreed about the need to see a plastic surgeon and he arranged for me to see a wound care expert.
I went to the wound clinic the next day, to find I was to see a friend with whom I had attended medical school starting 51 years ago. He wanted me to use a wound VAC system. My orthopedist had recommended this previously. I spoke with the device representative. I have a terrible allergic reaction to some kinds of adhesive tape. The VAC representative thought this might be a contraindication to use the device. At the wound clinic, at my suggestion, they put a test patch of the adhesive material on my forearm for a test. They also said I would need to see a plastic surgeon.
My quest for a plastic surgeon was frustrating. The doctor recommended by the wound care clinic does not accept new patients with Medicare insurance. Through my anesthesiologist friend, I found an experienced plastic surgeon who would accept me as a patient. His visit me feel better and said there was a change the wound VAC would obviate the need for him. Time will tell. I had the wound VAC system applied this morning.
Lasted edited June 10, 2008