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Dignity and Dilemnas
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Dignity and Dilemnas My being very sick isn't new to these pages. I am putting off another mid-line surgery that could possibly save my life. I haven't felt strong enough to face that ordeal. I have had time to reflect of my choice and life in general this past week. I am surviving in hellish pains that no human should have to endure, in order to force me deciding to opt for the surgery. The last time I cursed the Docs for saving my ass, I hurt that bad for that long afterwards. Admittedly the barely a month old double fusion on my lower back had contributed to much of that over whelming. I took over 3 years to "fill in" my cages, but that they did, instead of rot. Thank goodness. I haven't been able to enjoy a simple meal or drink any carbonated beverage since '98, without extreme pain as a consequence. I do now know why that is and was. When my small intestines were en-strangulated within my diaphragm, I'd read the reports of partially necrotic they chose not to re-sect as the color returned so quickly. It is this section now that is problematic. I've complained almost nonstop since then, to the point where I had to weigh my own sanity for living in such pain, "that didn't exist" It did, now it's seen, as I'm betting it has been on all those CAT scans & upper G.I's I've had so frequently since. I can see now where this surgery could restore a quality life, maybe more than I could see yesterday, even. What bothers me so much right now, is how, if I decide not to proceed, the medical community feels any rights to rob me of a civil end to a life they have already robbed of so much quality, with these missed diagnosis? I once again trusted them too much. I was allowed a phenegran/ demerol & torradol shot yesterday, good God what an ease of my pain & internal organ turmoil that was. Now we're back to the harsh surgery incentive program, or regiment, whatever this is. I am getting by as best as I can, but should I chose further non treatment, should I be entitled to as much dignity and relief as any other terminal patient? I am one tough lil cookie.. but even I have thresholds that I just can't be expected to thrive in. Thanks for allowing another "vent blog" Peace with honor & love to my beloveds. "A strong man carries a sword, a smart man carries a pen, a wise man carries them both. " |
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sensual....there is no Claiming to be the middle man. It is a Fact of life. The patient is a consumer and the medical care is a service. It doesnt matter what service a consumer buys...one does need to be paid for it. I take my car in for a tuneup...they expect payment when I pick it up. I go in for a haircut, they expect to be paid when I am finished. I have no doubt if a patient a person walked up and paid cash for a medical test....it would be done no questions asked. Unfortunately who can for out $100,000 for a week visit to the hospital...not I for sure. It is a reality, hence why so many are getting out of the field. They predict Michigan alone will be 5,000 physicians short in 5 years. Why spend $200,000 on education, 8-10 years of your life in school, 100 hour work weeks...not to get paid???? It doesnt take Elmer Fudd to figure that one out. Many of the physicians in this area are going to cash on service. IE You pay for your treatment and they will give you the necessary forms to fill out for you to revamp the costs from your insurance company. There fees are less because they dont have to hire 2 office staff to fight with the insurance companies all day. You pay upfront and it is the patients responsibility to get the money compensated from the insurance. They have lowered there office visit costs by almost 30%, so its a win win. If you dont have insurance its cheaper to see a doc. And if you do....depending on the type you buy, its easy phone call or paperwork to get the money back.
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I can't imagine the pain you've survived, Mike! I wish you the best that can be. I have little understanding of the medical community and their 'middle' stance in so many of health issues. Claiming to be in the middle between the patient and insurance has to be frustrating, yet the patient needs to be the focus...ALWAYS! Just my own rant...sorry. I hope you're needs are met soon. Best always! Sensual~
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Well eagle....I will cross my fingers and toes for you also. Wish you the best in whatever you decide. Since I'm so far from average, from prior surgeries I'm a hardcore patient, combine that with near or smaller than childlike size from degeneration.. comparing everything from blood work to a standard has just been wrong. A "normal" temperature is an upper low grade fever to me, which is also linked to the digestive wellness, I am normally a bit slower than my warmer blooded compadres  I just have been upset that this issue is exactly the spot I've shown them all these years.. even i extra slide with me putting my finger on it would have pinpointed "right here!""A strong man carries a sword, a smart man carries a pen, a wise man carries them both. "
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Well eagle....I will cross my fingers and toes for you also. Wish you the best in whatever you decide.
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Lkkn, I believe part of my hesitation is that I had been left open gut you described, to match the 3rd time cutting of my lower back that the left an incision appx a foot long on my lower back. My brother had joked about looking as if I'd been split in a sword attack. That has been a foundation for evaluating my upcoming procedure, most likely wrongly, that is part I do see council on as well. At least tonight while in the ER, the recollection of my "hands man" of my last 2 back surgeries, is going to prompt me to look that outstanding man & surgeon up. He's since switched to Bariatrics, when my neurologist's health failed... so just maybe.. fingers are tightly crossed "A strong man carries a sword, a smart man carries a pen, a wise man carries them both. "
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Thank you Lkkn, I am at even a tougher crossroads, in order to prove to me that there will be a quality life worth pursuing, they will have to admit that they have allowed me to live with this undue abdominal pain for the past 10 years, and that the radiologists have plain blown my readings. I've had around 8 CATS, around that many or more upper GI series X-rays , since my diaphragm repair in '98. I have had companions in the office with me, when I've pointed directly to this area, and was told no organs there could cause such pains. The kicker in much of this was the specialist I had been scheduled to follow up a oolonoscopy with, turned me down and refused my test, as a non payer, he re-billed my insurance for his assisting in that '98 procedure, though he did indeed was paid and timely, he then billed Medicare in entirety for the procedure he turned me away from. He has been paid 3 times for just the 1 test. He is now trying to schedule me in for another follow up appointment, I received that letter just last week. I have had a bad time living with this, I have hurt other's feelings, that preferred dining out, I hate dining publicly, as the pain resulting from the simple act of eating and the following discomfort is so hard to mask. It is now all water under the bridge, but nearly 2 decades of being miserable from the simple act of eating is very hard to put out of mind. I had mentioned the prevailing self protection attitude to a doctor, after watching a toddler knocked over by the solid office door, I'd thought of cameras, glass panels, complex ways the nurses could see patients endangered by that door, then simply changing the door to swing inward instead of outward seemed by far the simplest solution. The doctor said that could violate fire codes. The toddlers and other patients are still being harmed by that door to this day. Are we indeed making progress? I did not pursue a career as a physician when I recognized my irresponsible nature, and that was before the litigating and malpractice days that we live in hit full force. I still believe I must trust my own judgment on my strengths and feel that survivability will hinge on being able to gain some strength and weight before undergoing this procedure, but if I choose to go ahead, it will need to be very soon. I do thank you for the read, the insight and your comment. Best wishes always, Mike "A strong man carries a sword, a smart man carries a pen, a wise man carries them both. "
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Eagle, I will try to shed some light from a medical professionals aspect. Much of this will be generalizations and not directed at your specifically as I dont really know your case. Every person does have a right to choose what they want or dont want in medical care. I dont know of any hospital that has a locked door policy, outside of the psychiatric ward. People choose to come to the hospital for help and choose to leave if they dont wish to continue treatment even under a healthcare providers direction. As you choose to treat or not to treat a personal illness. A physician can choose to treat or not to treat a patient. When a physician has a patient who goes against all code of ethics they he/she has taken an oath for...he/she has a right to discontinue treatment of a patient. Example...A physician I work with is highly respected by the whole community and people come to see him from throughout the state because of his knowledge and expertise in a field. He will see the patient, and recommend therapy for this patient. If the patient choses not to follow his recommendations, he will excuse himself from the case. Ie...patient smokes, hes about to lose his leg due to such poor circulation from smoking and the patient continues to smoke after the physician has offered every treatment out there for them. Patches, smoking cessation classes, hypnotherapy or any of the many options. This non compliance with the prescribed therapy is such a huge legal and malpractice risk for the physician he has no choice but to remove himself from the case. This day and age I hear at least once a week in my practice how this patient or that patient is "gonna sue you". In your situation, necrotic or infected, weakened bowel is a HUGE risk for all involved. As Ely referred to as the NASTY things...it only takes a matter of a couple days for those toxins from a leaking bowel, or from a gangrenous bowel to put you into a septic shock. Once that happens, its rare to come out of it. It only takes on 48-72 hours after the onset for it to cause your demise. Sometimes having it dealt with "too late" is "too late". Recently had a 21 yr old walk into the ER. 9 hours later she was dead. Family wanted to sue. By the time she came in...the infection was so wide spread her internal organs had all shut down and the infection went systemic. How could she have walked in? Your body can compensate immensely for all its inperfections before finally it just turns off the power. A physician can prescribe narcotic therapy for you, BUT legally he has to also document his findings and why he/she is giving these too you. Your physician who knows and treats you is aware that your situation is a malignant(incapatible with life) issue and using his/her best judgement knows that the surgical revision is the only therapy that will fix the situation under Perfect conditions. Perfect conditions meaning you eat proper for aid in healing, you have some sort of mild excercise to stimulate circulation and motility of the bowel, you dont smoke--causes necrosis of blood vessels decreasing circulation for healing abilities, you give pain meds with caution as they all cause slowing and decrease mobility of the bowel which will heighten the ischemic areas and cause more pain and less healing, and the list goes on. With the sue happy world ( not accusing you of being one of them) it has changed the whole world of medicine today. All of this can put your physician at risk for going up against the medical liscensing board for negligence in not treating such a disease. Worse case scenario...loss of liscensure. You can thank your politicians and insurance companies for alot of that. Its a COVER YOUR ASS world out there in the medical field. Many physicians pay six figures just to get low end malpractice insurance. Many are not negligent of malpractice, yes and some are, BUT people looked for crossed Ts and dotted I's anymore before they threaten it. Its very sad for the patient, the caregivers, the family and the physicians. Medicine is nothing like it used to be. I have seen many "open gut" patients in the hospital and it is a loooong recovery. How the heck they can keep such a positive attitude ( 50% of recovery is attitude) I will never know. I give them a huge amount of respect for that. Ultimately to treat or not to treat is YOUR choice. Your physician has that same choice. If you and your physician dont agree on a program, then you move on to someone who does. You dont always have to buy the first car you see per say. There are alot of "alternative therapies" out there also if that is something you believe in. Whatever you decide is your choice. I can see both sides of the spectrum, but just want you to see the medical side. Most people in the field have gone into it to help and to heal. When you meet up with someone who choses not to follow and you know it will be extremely harmful them...its tough for us, but we still do have to respect your decision. Giving you pain meds is a "bandaid treatment" It covers the symptoms, but it doesnt deal with the problem. You get to the root of the problem, then you wont need the pain meds. Its a temporary fix and a double edged sword. With each dose you can ease the pain, but can also potentially cause more harm, and the longer the portion of the gut stays in, the more damage it is causing to the vital organs which can be non reversible. Whatever you choose.....Huggggs and my thoughts are with you. LKKN
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Thanks Ely, I do appreciate fully the effects of those toxins, when I was hospitalized for the intestinal blockage in '98, I have no recollection of driving myself to the hospital, the following days while it was being diagnosed are very dream and hallucinatory for my memory yet. Even the self odors & tastes recalled, this being so very difficult to describe were indeed staggering of themselves. I really wasn't closed per say after that particular surgery, my incision was instead packed for weeks after that seemed like months as that healing unfolded. I guess I can't expect surgeons to fully comprehend what a traumatic ordeal that was to my life. I'd been shamed for many years prior, by constantly complaining of the diaphragmatic herniation as felt pain. To this day many dismiss how much was involved, in spite of an almost universal knowing, by anyone that has ever ridden on a roller coaster, yup that modified skin layer does indeed contain a surprising amount of nerve endings. I can't explain just how damaging the inability to properly eat and drink has been to my entire healing process through out all these years. I do not wish to die, especially such a painful demise, but since I am surgically modified and repaired as is, the haste and lack of solid question / answer time set me back. I also must prepare for a lone recovery, while keeping any semblance of a life intact. As for allowing my animals destroyed to unburden myself, indeed I do choose the worst as my ending of this life's time cycle. Thanks for commenting and your concerns, I wish you the very best, Mike "A strong man carries a sword, a smart man carries a pen, a wise man carries them both. "
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You should certainly be allowed pain relief/management regardless of whether you opt for surgical treatment or not. As a matter of fact *failing* to provide pain management/relief options to you would classify as malpractice in most places. I do have to tell you though that without the surgical option you will wind up with the toxins from the perforation doing NASTY things to your liver and kidneys in addition to causing a VERY nasty secondary infection external to your intestines. All of that is NOT said to scare you but rather because I am a huge fan of informed consent and in my case it's FULLY informed consent. This half-assed "paint a rosy picture for the patient" is a crock of bovine excrement that I just can't get on board with. The patient AND their family *deserve* to know the whole story not just the pretty parts of it.
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