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2. Make a list of questions and concerns before seeing your health care provider. Talk to your partner and close friends and ask them if there are questions or concerns that you should raise with your provider.
3. Ask for more information when tests or procedures are proposed (Robin, 1984).
- Why do you recommend this particular test/procedure/interven-tion for me and what are the major benefits?
- What are the risks and how often do they occur, in your experience and in the research literature?
- What will you do if the treatment is not successful?
4. Ask your provider if there is anything that you should or should not do to promote healing. As much as possible, ask for advice on specific efforts you can make. General statements without instructions such as, "Relax" or "Don't worry," are not helpful unless the practitioner teaches you specific skills to relax or to interrupt worrisome thoughts. Many health professionals do not have the time to teach you these types of skills. In many cases the provider may not be able to recommend documented peer-reviewed self-care strategies. Often they imply – and they can be correct – that the specific medical treatment is the only thing that will make you better. In my case I did not find any alternative procedures that would reverse a hernia, although there may be habitual postural and movement patterns that could possibly prevent the occurrence of a hernia (Bowman, 2016). Being totally dependent upon the medical procedure may leave you feeling powerless, helpless, and prone to worry. In most cases there are things you can do to optimize self-healing.
5. Think outside the box. Explore other forms of self-care that could enhance your healing. Initiate self-care action instead of waiting passively. By taking the initiative, you gain a sense of control, which tends to enhance your immune system and healing potential. Do anything that may be helpful, as long as it is not harmful. In my case, future medical options to resolve urinary retention could include additional medications or even surgery. Researching the medical literature, there were a number of studies showing that certain herbs in traditional Chinese medicine and Ayurveda medicine could help to reduce bladder irritation, prostate inflammation and possibly promote healing. Thus, I began taking three different herbal substances for which there was documented scientific literature. I also was prescribed herbal tea to sooth the bladder. Additionally, I reduced my sugar and caffeine intake to lower the risk of bladder irritation and infection.
6. Collaborate with your health care provider. Let your provider know the other approaches you are using. Report any interventions such as vitamins, herbs, Chinese medicine. Ask if they know of any harm that could occur. In most cases there is no harm. The health care professional may just think it is a waste of time and money. However, if you find it helpful, if it gives you control, if it makes you less anxious, and if it is not harmful, it may be beneficial. What do you have to lose?
7. Assume that every health care professional is committed to improving your health to the best of their ability. Yet at times professionals are now so specialized that they focus only on their own discipline and not the whole person. In their quest to treat the specific problem, they may lose sight of the whole person and other important aspects of care. Thus, hope for the best, but plan for the worst.
Preparing for Surgery
Assume that the clinical staff will predict a more positive outcome than that reported in the medical literature.In most cases, especially in the United States, there is no systematic follow-up data since many post-surgical complications are resolved at another location. In addition, many studies are funded by medical companies which have a vested interest and report only the positive outcomes. The companies tend not to investigate for negative side-affects, especially if the iatrogenic effects occur weeks, months, or years after the procedure. This has also been observed in the pharmaceutical companies sponsoring studies for new medications.
Generally, when independent researchers investigated medical procedures they found the complication rate three-fold higher than the medical staff reported. For example, for endoscopic procedures such as colonoscopies, doctors reported only 31 complications from 6,383 outpatient upper endoscopies and 11,632 outpatient colonoscopies. The actual rate was 134 trips to the emergency room and 76 hospitalizations. This discrepancy occurred because the only incidents reported involved patients who went back to their own doctors. It did not capture those patients who sought help at other locations or hospitals (Leffler et al, 2010).
The data are even worse for patients who are hospitalized; in the US 20% of patients who leave the hospital return within a month; while in England, 7% of those leaving the hospital return within a month (Krumholz, 2013).
1. Ask about possible complications that could arise, the symptoms, and what the physician would do if they occurred. Do not assume the health professional will have the time to explain or know all the possible complications. In my case when the surgeon removed the catheter at 4 pm two days after my second emergency room visit in which a catheter was inserted. I had to ask, "What would happen if I still cannot urinate?" Again, the emergency room was the only answer. However, I know that he should never have allowed me to leave without checking if I could urinate. He should have referred me to an urologist and/or taught me simple self-catherization which would have eliminated the long waiting in the emergency room, the excessive stretching of the bladder and the subsequent emergency room medical error on my third visit to the ER. It would also have reduced the medical costs by a thousand-fold.
2. Get a second opinion. In my case, the surgeon came highly recommended, is very experienced, and has done many hernia repairs. I trusted his judgement that I needed a bilateral hernia repair although I only felt the bulging in the right inguinal area and did not feel bulging or sensations in the left inguinal area. Despite my feeling of trust, I should have asked for a second independent opinion just to be sure. In many moments of despair when suffering the significant complications, I even started to wonder if the bilateral laparoscopic surgical repair was really necessary or just done to increase the income of the surgeon and the outpatient surgical facility in which he had a financial interest. My surgery resulted in large hematomas, irritation of internal organs, and possible damage to the GI track. This type of complication did not occur for a close friend who had a single-sided hernia repair by the same surgeon in a hospital where the surgeon had no financial interests.
3. Request medical personnel who are highly experienced in the intervention. Mortality and complications rates are significantly lower for practitioners who have done the procedure at least 250 times.
4.Don't assume the worst but be prepared for the worst. Ask your health care provider about the various side effects of surgery, including the worst things that could happen, and then develop a pre-emptive plan.
The most common problems associated with surgery and general anesthesia include the following:
Urinary retention. Following general anesthesia, neural enervation to the bladder and gastrointestinal tract are often affected. The general risk for postoperative urinary retention (POUR) for all types of surgeries ranges from 7% to 52% (Tammela et al, 1986; Petros et al, 1990; Petros et al, 1991; Gonullu et al, 1993; Tammela, 1994). For patients who have surgery for hernia repair 24.4% will experience postoperative urinary retention (Keita et al, 2005) – one in four. The risk for older males is even higher. Do not leave the medical unit until you have urinated or have a Foley catheter inserted with a leg bag and appropriate follow-up managed by a urologist. In my case, neither the surgeon nor the outpatient hospital checked to determine whether I could urinate – they just discharged me the moment I was conscious. Discharging a patient who has had general anesthesia without checking to determine whether they can urinate goes against all medical guidelines and standard hospital policies and constitutes malpractice. As this was my first surgery, I had no idea that urinary retention could occur. Thus, I did not recognize the symptoms nor did the advice nurse or the surgeon when I called for advice before checking into the emergency room.
Constipation. Plan to eat a high roughage diet that supports bowel movements.In case bowel function is slow in resuming, you may want to have on hand simple over-the-counter supplements such as magnesium capsules, psyllium husks, and aloe vera juice or gel, all available at any health food store. Liquid magnesium citrate (GoLytely ® solution available at drug stores), can be useful, but tends to be a little stressful to take . Check these over-the-counter supplements with your provider to avoid supplement-drug interaction.
Infection. Many patients pick up hospital-induced infections (nosocomial infections). In my case after four weeks with a Foley catheter, I got a mild bladder infection and had to control it with antibiotics. While in the hospital, avoid direct physical contact with other patients and staff, wash and rewash your hands. Remember medical staff tend are less attentive and wash their hands 10% less in the afternoons than in morning. Ask the medical staff to thoroughly wash their hands before they examine you. If you do get an infection, contact your medical provider immediately.
Pace yourself. Assume that recovery could be slower than promised. Although your body may appear to be healed, in many cases your vitality could be significantly reduced for a number of months, and you will probably feel much more fatigued in the evening. The recovery from general anesthesia has been compared to recovery from a head-on car collision.
Identify your support system in case you cannot take care of yourself initially. Organize family and friends to help you. In my case, for the first two weeks I did not have the energy or mental ability to do anything for myself – the overwhelming abdominal spasms and the three episodes in the ER had drained my energy. I was very lucky that I had my family and friends to help me. For the first few weeks, I was so distracted by the pain and discomfort that I did not drive or take care of myself.
Have a plan in case you need to go to the emergency room in the evening. Know its location and have someone who can take you.
Assume that you will probably have an extensive wait in the ER unless you are desperately ill. Do not try to "tough it out." Be totally honest about your level of pain, so you can get the best possible care. In my case, I had terrible abdominal pain and spasms with urinary retention, but still acted as if I were okay. When the admitting nurse asked me how I felt, I rated my discomfort as a 5 on a scale from 0 to 10. In my mind I compared the pain with that I had experienced after a skiing accident, which was much worse. What I had forgotten was that the ER is triage system, so I had to wait and wait and wait, which was phenomenally uncomfortable and increased bladder hyper expansion.
In the ER, ask which medical specialist can follow up with you if further issues develop. A general hospital usually has specialists on call. In my case, if I had requested care from a specialist, I would have been treated directly by a urologist. I would not have had to follow the advice of the surgeon who said, "When you go to emergency room, have them empty the bladder and then go home." Almost all urologists would have recommended keeping the Foley catheter in for a few days to allow the side effects of the anesthesia and the trauma caused by the bladder expansion to ameliorate and then test whether urination was possible.
Have a medical advocate with you at all times who can observe that the procedures are done correctly. There is a four-fold increase in errors during the evenings and nights as compared to the morning. The more medical staff is multi-tasking, the more likely they will make errors. Have the medical personnel explain any procedure before they perform it – why and how they will do the procedure and what you will experience. In my case I had to interrupt the nurse because she was unfamiliar with how to use the Foley catherer. You also need to know if they are experienced in that particular procedure. If the answers do not make sense, stop them and ask for another staff member.
In the ER, record the instructions on your phone. Have medical staff explain and demonstrate to you and your support person what you will need to do at home. Then repeat the instructions back to them to be certain you have it right.
Remind yourself that errors can occur. In my case, during the third ER visit for urinary retention, the nurse delayed the anchoring of the catheter and it had slipped down out of the bladder into the urethra. As she began to pump, I could feel my urethra tearing and I told her to stop. This was immediately followed by another procedural error on her part, so I had to again alert her to stop, which she finally did and then left the room. All this occurred at 1 am in the morning. As the patient, I had to take charge at a time when I was totally exhausted. As the nurse retreated, I was left sitting on the gurney waiting for someone to come and follow-up. I waited and waited and when I finally stood up, the catheter dropped out and I began bleeding from the urethral opening and dripping blood on the floor.
Lesson learned: hope for the best but prepare for the worst. In my situation, after eight weeks and numerous visits to the urologist, the urologist removed the catheter. He did this at 8:30 in the morning. This way I could go home, and I could go back to his office for further care if I could not urinate. Before leaving the office, I planned for the worst. I asked what would happen if I could not urinate later in the evening and requested that he give me a few catheters, so if problems developed, I could catheterize myself.
The urologist gave me the catheters and explained how to use them, although I did not actually practice on myself. Still, I felt better prepared. During the day, I become more and more optimistic because I had no problems; however, at 2 am I woke up unable to urinate. For the next hour, I felt very anxious about inserting the catheter, since I had never done it myself. Finally, my discomfort overcame my anxiety. To my surprise, it was easy. After waiting a few minutes, I removed the catheter and went to bed feeling much more comfortable. The next morning after breakfast and a cup of coffee, I found that my body was working fine without the catheter.
Had I not planned for the worst, I would have once again gone to the emergency room and probably waited for hours, risking a repeat of tremendous discomfort and irritation. This simple planning reduced my medical cost more than a thousand-fold from $1700 for the emergency room to $2 for some single-use catheters.
1. I thank my family, friends and colleagues (Karen Peper, Norihiro Muramatsu, Richard Harvey, David Wise, Annette Booiman, Lance Nagel and many others) who generously supported me during this journey.
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Erik Peper, PhD, BCB, is an international authority on biofeedback and Professor of Holistic Health Studies / Department of Health Education at San Francisco State University. He is President of the Biofeedback Federation of Europe and past President of the Association for Applied Psychophysiology and Biofeedback (AAPB). He has received numerous awards such as 2013 Biofeedback Distinguished Scientist Award in recognition of outstanding career and scientific contributions from the Association for Applied Psychophysiology. He has a biofeedback practice in Berkeley, California, at BiofeedbackHealth (www.biofeedbackhealth.org). He is an author of numerous scientific articles and books such as Make Health Happen, Fighting Cancer-A Nontoxic Approach to Treatment, and Biofeedback Mastery. He publishes the blog, the Peper perspective-ideas on illness, health and well-being (www.peperperspective.com). He is a recognized expert on holistic health, stress management and workplace health. His research interests focus on self-healing strategies to optimize health, illness prevention, the effects of respiration and posture, and self-mastery with biofeedback.
Erik Peper, PhD
Institute for Holistic Healing Studies/Department of Health Education
San Francisco State University
1600 Holloway Avenue
San Francisco, California 94132
web: www.biofeedbackhealth.org; blog: www.peperperspective.com