Feet on Solid Ground

I nay be harsh at times, but I always aim to be fair.
I am so direct and open when dissatisfied with a doctor that I feel a need to post when I encounter a really good one. Dr. Thomas Mancini, with offices in East Greenwich, RI and on Mineral Spring Avenue in North Providence, is one of the good ones.
I do not know (or care) if he is related to the other podiatrist Mancini who has an office on Armistice Boulevard in Pawtucket.
Just as I state why I come to dislike or distrust specific doctors, I want to point out the factors of Mancini’s positive appraisal.
He listens. This can’t be overstated. As a diabetic, I have heard a lot of pop-psychology jargon about needing a "medical team" for my care. In such terms, Mancini would be part of the "team" of which the patient should always be captain and manager. We’ve fully discussed aspects of my foot problems, including the infection and the ongoing Charcot condition. It is also obvious to me that Dr. Mancini had put independent thought into things.
He made himself fully available to me and my roommate when and since things went bad with the toe infection. He has been great in booking timely emergency visits as issues arose.
The foot has been fully inspected with each visit and he has done anything and everything necessary, from the Charcot to the infected toe to routine things.
He has answered any questions I posed rather than become defensive or offended by them. There are darker aspects of my long term prognosis that he stayed quiet about, but he sugar coated nothing when I raised such issues. If anything, he seemed genuinely relieved that I was able to bridge the subjects, which included my belief that it is probably inevitable that, sooner or later, I will lose the right foot below the knee due to the Charcot condition.
Dr. Mancini has no God Complex. He is approachable and knows his own limitations. When the hospitalization for the infection ended, the Charcot condition was much worse. Without hesitation, and without trying to pawn me off on someone else, he recommended me to another foot doc, Douglas Grod to look into treatment beyond what Mancini felt he could do. As it turns out, Mancini was not sold on the ultimate wisdom of doing what Grod could do. The point to me is that even with his unvoiced objection to the potential procedure, Dr. Mancini made the recommendation for me to look further into the situation.
I have seen very little humility like that among doctors, and the entire experience–which is ongoing–makes me recommend Dr. Thomas Mancini above any other foot doctor in Rhode Island, for diabetics or people with other foot problems.

Charcot Bait-sics

There’s not a lot on the Internet about Charcot Foot, so here’s some basic facts and warnings.
The chief "precondition" is diabetes.
The second "precondition" is a foot injury, usually a broken bone that neuropathy in the diabetic ma prevent the diabetic from realizing.
The chief symptom is massive foot swelling, usually with no pain or very little.
Other symptoms will usually include elevated temperature in the swollen foot, up to 7 degrees Celsius from the unaffected foot.
The "old" feet smell" may be pervasive even when the foot is clean. I took to spraying my foot with Right Guard.
The swelling may get larger or recede on its own throughout the day. Be aware that your shoes may not fit correctly and could cause cuts or abrasions that could infect easily. The changes in swelling can also infect the skin, including potential for splits or pits as the skin expands and contracts.
If the patient does have broken/fractured bones, se must stay off the foot. If the bones are not given opportunity to heal, they can poke through the foot from the inside.
The patient should see a competent podiatrist regularly. Tell the doctor about any drugs being taken, including anti-inflammatory drugs such as prednisone.
Taking anti-inflammatory drugs is not particularly a good idea if there are broken bones. The swelling protects the broken bones.
Ask your podiatrist or other doctor about bone-solidifying drugs usually prescribed for osteoporosis. This could limit or prevent bone density loss during the healing process.
If you must have some mobility, a Crow boot will buffer the ankle mush more effectively than a flexible cast boot.
Charcot foot is something of an exotic or esoteric condition and is not well known outside the medical circles of diabetes and foot specialists. Go right to pone of those specialists or a sports medicine practice rather than to an urgent care center. Well intentioned doctors who do not recognize the true problem can do you grievous harm.
Do not, under any circumstances, allow any doctor or medical person (or anyone else) to insert anything into the foot, not to drain the swelling or extract to test for infection or any other reason, no matter how reasonable it sounds. The risk of infection is too high, and any infection exponentially increased the chance for immediate amputation. If you see any treating professional coming at your foot with a needle, kick them in the face (with your good foot, of course.) Those professionals will have long forgotten jabbing you when you’re on the operating table having your foot sawed off.

Charcot Foot Phase 1.2

At least one account I encountered estimates that approximately 3% of diabetics will "come down with" Charcot Foot. In bygone eras it used to afflict others, but nowadays it’s all but exclusively a diabetic problem. Brief basics, normally the diabetic breaks or fractures a foot bone, usually does not feel the injury due to diabetic neuropathy and the foot swells up in response. Treatment is typically immobilization to prevent the broken bone from displacing. The displaced bone can rip through the foot from the inside.
My injury and affliction was atypical. I had tendon and/or nerve damage (and still do) but not breaks or fractures. (Breaks and fractures are both breaks, just of different severity and separation of the pieces.) The reports that cleared me came from both X-ray and MRI. Doctors at an urgent care center and a sports medicine practice, my GP and "Dr. Dumbass" all gave diagnoses of "no breaks."
So imagine my surprise when Dr. Dumbass–aka podiatrist David Greenberg–told me on the second visit that I did have breaks and fractures.
I had resumed bowling as exercise with limits on frequency and duration based on the "no breaks" diagnosis. This tail-spun me into stressful second guessing and worries of what further damage I could have inflicted to myself. Bowling was neither particularly successful nor painless, but it remained one of the few things I could still do and just about my only social interaction.
The bowling may seem haphazard. Maybe it was. My reasoning was that Phase Two of Charcot Foot is typically a long duration of rebuilding strength and integrity in the foot, things lost by a combination of inactivity and poor circulation that limit the flow of nutrients to the foot. Basically, immobilized and unused feet tend to atrophy during Phase One. I experienced the most evident ankle collapse in the month that I did stay off the foot almost entirely, and little to no evident progression when I did get the limited exercise. The human body is an odd machine: it works better the more it is responsibly used.
Dr Dumbass gave the new diagnosis without the benefit of any new X-ray or scan. Subsequent images ordered and reviewed by a later doctor showed structural damage that is natural progression of Charcot but seemed to confirm that there had been no initial bone damage.
I rectified Dr. Dumbass’s inconsistencies as statistical generalizations of the overall condition rather than any result of examination.
I started seeing Dr. Thomas Mancini when the foot swelled back up in response to discontinuation of prednisone.
Doctor Mancini had some concerns after a thorough examination of my foot, which is something Dr. Dumbass never really bothered to do. Dr. Mancini wanted me to consider Boniva type drugs and wanted me to pick up the leg brace that Dr. Dumbass had prescribed and I had been fitted for custom manufacture before the leg and foot re-inflated.
The toe infection that sent me to the hospital for four days interfered with those plans. The hospital, deeming a blind gimpy guy as a trip and fall hazard, kept me immobilized for the weekend. That proved a long enough time of absolute inactivity for the ankle to suffer further collapse. This change for the worse could be seen in the shape of the foot, felt when the foot was used or moved on its own, and it could be heard when I tried walking on it.

Limping Along

The last general update friends and acquaintances have asked about is life in general. Pre Charcot foot, the passive answer was "Hanging in." Now it is "Limping along."
This summer is the first season in seven or so years that I have not bowled in a league. The timing of the hospitalization interfered with the season start, and the "Crow boot" I must now wear will take some finagling and readjustment. I do intend to resume in the fall.
Mobility issues have me more limited, and my third- and fourth-floor townhouse-style apartment is less than ideal for someone who can no longer see nor feel stairs. I moved the computer to the dining room to get it on the main floor, but have not yet gotten the desk down stairs. As a result, I feel as though I have lost both the office and the dining room and the house feels like much less than what I bought.
This adds to the emotional depression that I feel funny admitting "aloud." People seem amazed at how well I’ve been dealing with the adversity of the last few years, so admitting that it has been and continues to be a struggle illogically feels as though I am letting some people down. The disabilities that have afflicted me have also catalyzed a new level of emotional depression.
The depression is worsened biochemically. Especially since the early Mat hospitalization, I have been keeping the blood sugar at lower levels. This has been good for circulation to the foot and behind the eye, but not good for temperament and feeling happy. The prednisone intake also contributes to those factors.
I stopped taking the generic Prozac after the hemorrhage, when the side effect of "suicidal thoughts and feeling" would irregularly arise. The quality of life issues have not improved, so I continue to avoid pharmaceutical anti-depressants.
I am adjusting to and struggling to accept my increased limitations. I force myself to adopt gratitude for what I can still do.
Most of the things I can still do cannot be done for as long. Gone are the days of 12+ hour exerting days; my stamina is not what it used to be. Gone are the marathons on the word processor; my eyes burn out after a couple hours.
What is not gone is my drive and the fiery will. This feeds the cycles of frustration as often as not.
I am working to do more with myself. I’ve been getting back to posting more regularly on the blog and am working on keeping up with short story submissions again. The next step with the fiction is to get some partially-done short stories finished
I’ve done a couple spots of yard work recently, minor accomplishments but more than most people in with my limitations would attempt, I think.
So I have had to slow down, but I have not stopped. Don’t cringe at the thought of a blind gimpy guy swinging a powered hedge trimmer over rough terrain. Just don’t get too close.

Doctor Dumbass

Dr. David Greenberg is one of the founding partners and president of Rhode Island Foot Care, Inc. I saw him three times in the winter of 2012. He had been referred by the doctor at Foundry sports medicine, where the Charcot foot had been first diagnosed. Liked the Foundry doctor and that practice. The sole negative I can say about the Foundry practice was that they recommended Greenberg. I heard Greenberg referred to as the best podiatrist in Rhode Island. Maybe that gave me unrealistic expectation. My GP had referred another patient to Greenberg at the checkout desk this spring. I shook my cast-boot covered foot at the patients, told them I referred to Greenberg as "Doctor Dumbass" and urged them to see the podiatrist I later experienced successful with, Thomas Mancini.
While I did not come to think of Greenberg as dumbass until the third visit, I really did not like him from the first. This was a basic consumer issue that I did not feel as though he really looked at the foot or listened to me. Supposedly he had looked over disks containing the MRI scan and X-ray before he entered the room. Am I wrong in thinking that was not enough without an on the spot exam? The MRI was a couple weeks old by that time and the X-ray was approaching four weeks past. The swelling had changed for the worse in that time, and the tendon in the foot had gained much more pronounced deformity. I left feeling as though I had paid for him to arrogantly confirm, "Yup, that’s Charcot foot," and nothing more. Between the Foundry doctor’s diagnosis and my research of the diagnosis, there wasn’t any doubt that Charcot was the problem. He gave advice of the best thing for my foot was to take care of my diabetes and sounded no different from every busybody with diabetic cousins who think the cousin makes them qualified to dispense advice about diabetes.
The second appointment got postponed by Greenberg’s office, and they indicated that one of his associates would see me o the follow up. I had no problem with that, and was disappointed when Greenberg saw me. He at least did look at the foot, in part because the swelling had receded on significant levels. He thought that was a good sign and did not correlate the prednisone eye drop prescription with the healing. My attitude: he is a doctor and should have suspected that, particularly because I mentioned it prominently; my tummy was rolling when I was there, and this had been the first time I had seen him after the retina reattachment surgery..
He was worse this time for being nice. He came across as patronizing, complete with a shoulder pat best reserved for little leaguers who hit a home run. I am not sure if his superior attitude or the prednisone is the true cause of my need to vomit before I left the office. I managed to contain the eruption to the medical waste barrel in the examining room.
The third (and guaranteed last ever) visit was in March. He declared the Phase One of the Charcot foot over and Stage Two healthily begun. He gave me a prescription for an in-the-shoe brace, a print out with choices of where to have it custom made, and no future appointment. Any actual examination was at best cursory.
He officially became "Doctor Dumbass" the day I went to get molded for the brace. The address on his printout had the wrong number on the right street. The orthopedic appliance place said they had moved twelve and had frequently asked Greenberg’s practice to update this. The prescription contained minimal information, and said nothing about the ankle collapse or how that problem had shortened my right leg.years before
The real kicker came in April, when (with the eye doctor’s approval) I stopped taking the prednisone. The leg swelled right back up, proving that Charcot’s Phase One had not passed, but had been disguised by the anti-inflammatory steroid.

Charcot Attack

Charcot Attack
The last ongoing or recent medical BS to update is the Charcot foot. I could deal with this better if I wasn’t so visually impaired. The original injury that triggered this rare diabetic problem would not have happened last autumn if I was not blind.
Very briefly, Charcot is a massive and typically painless swelling of the foot in response to and injury, one of the body’s usual defense mechanism gone into overdrive. There’s two main stages, both typically prolonged. The first is the healing of the triggering injury. The second is recovery from the healing. During the Stage One process, the swelling typically restricts circulation and thus limits nutrient and blood supply to the foot. These reductions cause the foot to atrophy and weaken. As my triggering incident did not include broken bones, I was able to be more active during Stage One than most people can be. I tried to stay active despite my roommate’s restrictive mothering in order to reduce any atrophy.
Maybe things would have been worse if I had completely reposed last autumn and winter, but a sinister level of atrophy did occur.
The almost cartoonish level of swelling ran from the toes to the knee with the most bloated and most stubborn point at the ankle. It stayed swelled for months, from October to February. It drastically reduced in February through April, but this was in reaction to the prednisone prescribed for the retina reattachment recovery, not true healing. I learned this when I temporarily discontinued the prednisone to reduce the steroid’s side effects.
I seemed to have two periods in which the ankle collapsed. Both of these happened at times when I was fully resting the foot and leg, the first in November when I temporarily ceased bowling, and the second while I was imprisoned in the hospital.
I note here for people reading this via an online search for Charcot foot: in the times in between the full rest periods, I could use the foot only because I had no broken or fractured bones that might shift and stab out of the foot. Most Charcot patients do have broken bones and should stay off the foot entirely.The difference before and after the hospital stay was drastic and unignorable. Before, the foot was uncomfortable to use. After four days totally off the foot, the boned in the ankle creaked and clicked if I tried to use it. The longer period of rest in the autumn made the changes less obvious at the time, but drastic changes had occurred.
The foot had swelled and remained that way for months. This did reduce circulation, which inhibited the flow of nutrients to the foot. The are that developed the worst problem was deepest, not furthest in the foot and maintained the worst swelling: the center of the ankle.
The ankle collapsed enough that my right legs was about a half inch shorter than the left leg.
I had seen a podiatrist three times, and on the third visit he prescribed a brace to be made and wished me luck.
True to my luck, I just keep hitting the jackpot with the quality of doctors I end up with. People referred to that first podiatrist as the best in the state. I quickly came to refer to him as "Doctor Dumbass."

Healing Power

The infection that sent me to Sturdy Hospital has healed up nicely enough.
I’m not positive how it happened. As I learned a full thirty days after discharge, the infection was a staph and strep combination, so it did come from me and not something I stepped in.
Prior to the infection, I had a minor cut on top of the toe, which I had picked at a week or so before. Also in that timeframe, I had pulled away the looser dead skin of a callous, as I’ve done a couple times a year for the past couple decades. So the infection would seem to be my fault, even though those two suspects did not seem to get actively involved in the major problem.
Think of the toe as a throwing die, with six sides, one of which is attached to the foot. The top cut was on a second side, and the callous on a third. Somehow, in events beyond my power to imagine, a small cut appeared on the side of the toe that was protected and sheltered by the adjoining toe. That side also did not seem to be a problem. The last two sides, the toe tip and the bottom, harbored the problem.
The Charcot foot allowed the problem by reducing circulation. I think it also caused the abrasion-type wound that developed on the tip. The foot had been massively swelled again, which made my shoe too small, which allowed a friction burn to rub on the tip. This area had the worst of the infection. The bottom soon afflicted with dry gangrene.
My podiatrist had seen the stagnant cut on the top of the foot and had prescribed an antibiotic cream. As I can’t really see my own feet in any detail, my roommate had been putting that on. Good thing, as that was the only reason that anyone who could see my foot was looking at it regularly. The =abrasion and infection and gangrene developed in two days. Things looked a little red that Wednesday; the bottom of the foot was gangrened Friday.
If it had gone on longer, the infection would most likely have penetrated to the bone and I probably would have lost the toe.
Many different antibiotics went through the IV at the hospital that weekend. I was prescribed Augmentin , a combination of amoxicillin and clavulanate potassium. The amoxicillin is a derivative of penicillin. The clavulanate potassium is one of those things that fights antibiotic resistance. I felt no side effects from the antibiotic, but luckily also never have been prone to such problems.
More than a month after the prescription ran out, things are going well. The podiatrist sees me every couple weeks and cuts away excess dead skin. The toenail is growing back nicely, and the dry form of gangrene never spread. The podiatrist has a visiting nurse coming for eight weeks after discharge, just to make sure trained (and working) eyes were on the healing wound a couple days a week. I went along with this as patiently as I can but look forward to this being the last week. I find the visit intrusive, and the question of when my last bowel movement seem more personal and intrusive than necessary. The nurse is also pretty humorless. He gave no discernable reaction when I answered the regular question "Any problems with your urine?" with "It’s been talking back and skipping school."

The Eyes Don’t Have It

I did not deal with the most common question in the recent feedback post: "How is the vision these day?"
The answer is "not too good."
I have not significantly lost vision in a sweeping sense since January, but it is clear that the retina reattachment procedure was not successful. To make my feelings as clear as I can, I do not blame the eye doctor for that. She warned me in my second-ever visit to her that I had the most complicated set of eye problems she had ever seen, and when moving towards the surgery she communicated clearly on what expectation would be realistic and what side effects could be expected.
The surgery improved things. The fog in my vision had been gray before the surgery and was clearer afterwards. The vitreous gel drainage took out a lot of the floaters and lasting debris of the vitreous hemorrhage and the smaller and non-vitreous hemorrhages that occurred fairly regularly after the PRP laser procedures.
I still cannot see close up due to the lack of choice in cataract lense. My obstacle for mid range and distance vision is often light adjustment. Even looking along a smooth surface between a sunny area and a shaded one requires readjustment. I have to stop and be sure of what I am looking at, that the line of transition is indeed just shadow and not a curb or step that might make me stumble. Moving between rooms with different lighting requires adjustment. I can see well in neither dark nor brightly lit areas, but when in the same environment for a while I do adjust enough to get myself around.
With the "cleaner" fog in my eye, I can see color better close up. I can’t see the TV too well and scene changes that have different camera lighting also blind me. Usually I just listen to the TV with my eyes closed. The TV does not find this disconcerting, though people do.
My "finger test" as given by my doctor’s assistants ranged from about a foot and a half to four feet, depending on light and my adjustment to it.
My roommate gives the finger test, usually after I’ve said something I find funny. He asks, "How many fingers am I holding up?" and my answer is always "My guess is one."
I’m doing my best to cope, and would be doing better if the eye problems were the limits to what I have to deal with.

Feedback 3

When recounting my experiences of recent hospitalization, I usually referred to the caregivers as "nurse types." In discussing this, it was pointed out to e that you really can’t tell who is what in a hospital anymore. The days of nurses in specific and distinct uniforms are a thing of a bygone era. Now, everyone that works at the hospital seems to wear scrubs. Employers try to assign job titles to make even the lowest-on-the-pole peons feels important, to the confusion of a public who really doesn’t know just how much training, education or qualifications a "certified" nursing assistant does or does not have. Are these people anything more than an old style after-school candy striper? How do we know that it’s not a janitor changing our IV?
I’ve gotten lazy in one aspect of the blog writing, and feel the need for apologizing for that. I run a spell check, but proofreading is a lot more on my eye and drains a lot, so I tend to skip that for blog posts in a way I never would for anything I would write to send to an editor. "Our" and "out" may be confused. The mechanical spell-checker won’t flag this, and the grammar checker chastises my general style more than it finds actual errors. And I have a hard time seeing the difference so might often miss it anyway. While a spell-checker does not know the difference between public service and pubic service, human readers do. Eye hop ewe cam four give an E weigh this us dis tracking fir ewe.
Anyone who might feel as though I mentioned the misplaced portable urinal bottle too many times should invite me to dinner. You must pick me up and bring me home. I will bring a bottle and set it on the table in front of your other guests and we will see just how much of an issue other people find piss bottles on the eating table. Restaurants have been closed down for far less.
The blog has spread from being a blind man’s bluff to a broader medical things. I am relating subjective experiences. I’m smart enough to have been one with more interest and educational opportunities, but I am not a doctor and do not aim to be giving medical advice. My goal is more important, to share on a consumer awareness level that it is important for patients as the consumers of health care to know what they are getting by questioning their doctors. Diabetes is a profitable niche in the healthcare market. People should do their own research. If three years ago someone had told me "always include ‘side effect’ in any procedure or medicine you Google" I probably would not be so blind today.

Sturdy on My Feet

I did learn a couple things from my three-plus day visit to Sturdy Hospital.
I did find the diabetes educator helpful and approachable about things. I learned some of the reasons for some establishment thinking, even if I think some seem more like excuses or covers for profiteering than legitimate reasons.
The night of my admission, I had been having stomach acid problems due to the prednisone and had drunk almost a half gallon of milk before leaving the house. Because they ran blood sugar tests on my arrival, I learned how seriously I was underestimating the blood sugar effects of 1% milk; that was the reason for the spike into the 600’s, which was high by my reckoning of the numbers and how I was feeling in the ER that night.
I unfortunately learned a little more disdain for the "lower levels" of health care providers, and perhaps for declining American work ethic. That single nurse-type who did bother to rinse the portable urinal had a foreign accent. None of the American-accented nurse types–whether they would officially be termed registered nurses, nurses, or certified nursing assistants–could have been bothered. The priority of the nurse types’ convenience over actual patient comfort and care astounded me. I have a strong customer service background, and do not see how many of the staffers I encountered that weekend would ever have lasted under some of the expectations I have had to meet.
I did not find hospital food to be all that bad, but most certainly bland for the lack of "unhealthy" flavorings. The salt substitute packets on the tray didn’t cut it for me. As far as I am concerned, something called "Mrs. Dash" should be put on a woman’s yeast infection, not on food. My roommate smuggled in real salt. I’m not a heavy salt user, but need it when it is needed.
I learned to stick to my guns. Both Sturdy’s podiatrist Dr. Harris and my own podiatrist Dr. Mancini complimented my successful battle zone of not letting the surgeon poke anything into the Charcot foot. Support like that, along with the hospital roommate’s compliments to my willingness to stand up to doctors might be dangerous praise with the ability to make a monster out of the raw material I provide.
I’ll try to keep myself in check.
Six weeks after admission and the weekend imprisonment, the toe is OK. I still have it, which is a feat for diabetic feet with infection that gangrened. I am still bothered overseen by a visiting nurse that my podiatrist wants keeping an eye on the infected area. Mancini himself sees me every couple weeks to check on the toe and the same foot’s broader Charcot problem. He cuts away strips of dead or undesirable skin. As I can’t particularly see or feel what he’s doing, he finds me an easy patient because there’s no real need for even local anaesthesia. The removed toenail is growing in nicely, perhaps as a positive consequence of all that milk I drink.

Anti-Climax

I know myself and how I can be, and how other people see me as difficult. Primarily, I am brutally honest, which contrary to your mother’s lies, is not the best policy. I do not indulge other people’s egos for the sole sake of their egos, and see my life, even as it is now, as something other than clay for shaping by control freaks. My refusal to blend in with the flock of sheep or take that plunge with the other lemmings leaves me vulnerable to other predators.
I respect other people’s opinions and beliefs, but have found that others get upset in various ways when it becomes clear that respecting other opinions and embracing them as my own are two different things. I do alter my thinking and change my mind, but there has to be logical reasons that change the why of my thinking, not the what that is makes up the thoughts.
Those ways that my odd brain works really sums up a great portion of my almost-automatic disagreement with doctors. I can narrow it down to the differences in attitudes with my GP: he looks to maintain a quantity of life, and I would greatly prefer to have a quality of life. This same thing would cover the from-the-gate difficulty with Dr. Paz at Sturdy Hospital. He was opposed to a Do-Not-Resuscitate" order from someone so young. Put ego in the mix where others thinks their beliefs should automatically apply to everybody, and some level of conflict is as inevitable as neuropathy in diabetics.
I think of these quirks in relation to my last day at Sturdy because a "diabetes educator" came to visit me. I visualize some regular readers or people that know me going pale at the thought of the explosive conflict that must have resulted from such a meeting. No conflict occurred.
There is one major aspect to my personal diabetes care in which I am probably (almost certainly) dead wrong about but have and will stubbornly continue my way. The diabetes educator and I discussed this point with disagreement, but we each maintained enough respect for the reasons for each other’s opinions that no conflict arose out of a difference of opinion.
The diabetes educator did not draw out my more stubborn aspects because she at least listened to the me and the reasoning that developed over near 40 years of living with diabetes.
The diabetes educator was much younger than I. She freely admitted that I taught her a few things about how diabetes was handled long before she got into the field, and some things she quietly acknowledged but "they" were not "supposed" to acknowledge to patients. She dispensed advice, not dictates.
She got called away and was one of the few Sturdy staffers to leave my bedside without fuming from the ears. I was looking forward to speaking with her again, but when allowance for discharge came in that Monday afternoon, I did not wait around for tearful goodbyes. I figured Dr. Paz and the staff had a party to begin as soon as I had left the building.
The lack of conflict seems logical: the diabetes educator understood what I consider a basic fact: you cannot tell someone that the sum of their life experiences is wrong.

Mercy Me!

My co-habitant for my weekend in Sturdy Hospital was imprisoned for an infection of his throat. He worked at a waste water treatment plant, so the staff, as it turned out, had specific concerns about the nature and source of his infection. His doctor–who was not the self-worshiped deity named Paz–was concerned that he might have MRSA. The nurse who told him this in clear hearing of me said she didn’t think that was the case, but that if the doctor was right, they would transfer him to his own room to prevent widespread contagion.
I butted in to ask what that was going to do for me–the guy with a chronic and temperamental illness and an open infection on my big toe who had been trapped in the room with the MRSA for an entire weekend.
The nurse was completely unconcerned about the potential of me catching MRSA from the roommate or its potential to worsen whatever fast-moving, as-yet-unidentified infection that had afflicted me. She told me I had no risk of catching it, but could give no non-contradictory reason why he would have to be segregated to a separate room if he did turn out to have MRSA.
MRSA "mersah" stand for Methicillin-resistant Staphylococcus aureus. It’s a staph infection resistant to the usual antibiotics. Staph bacteria grows on the human body without harm but can go bad if trapped under the skin such as in a boil or ingrown hair or when the body is feeling overloaded with other problems.
Most people "catch" MRSA in hospitals or nursing homes. My concerns were by no means paranoia and I do not understand why my roommate was not sequestered on the doctor’s first suspicion. MRSA is that superbug you leave the hospital with when going in for something more routine. In a setting where the nurse-types are too lazy to rinse urinal bottle, should I believe they are meticulous in sanitizing themselves between patients?
The reverse possibility should have also been considered. At the time of my discharge, the exact nature of my infection had not been determined. How wise was it for the staff to place the roommate in with the surly guy with the unknown and extremely fast-forming toe infection that had gone from being red to gangrenous in two days?
The contagion concern may be the real reason neither of us had our bandages changed in more than a day. It’s certainly easier for the staff to neglect the patients than to thoroughly sanitize every time sanitizing would be called for.
The roommate was also discharged that Monday, and was told specifically that he did not have MRSA. I left without having heard what had afflicted my toe. Only because I was diligent in learning the truth did I finally get results, and not until June 6, a full 30 days after discharge. It was, as was "usually" the case, a combination infection of basic staph and strep. Yes, you can get strep in other areas outside the throat, and even on your toe without having cause to stick your foot in your mouth.

Monday Monday, can't trust that day,

Monday Monday, sometimes it just turns out that way
I will admit to the possibility that I was in difficult mode by then. I try to come across as easy going, but that’s an act I cannot usually maintain for long. This blind guy tends to look for problems once he has seen problems. Sturdy’s staff had provided many to be seen.
First problem: the 4 AM wake up to be poked and prodded. Neither my roommate nor I could get back to sleep that morning. The man-baby was screaming again in his drama queen way, a voice of protest that carried not a hint of actual pain. My routine of calling out belittle commands to "man up, you wimp!" shut him up to the amusement of the nurses and my roommate.
The 4-in-the-f’n-morning wake up demanded of sick, recuperating and in need of rest people became more of an issue when one of the nurse types let it slip that we were woken so the staff could take the end of shift patient vitals. The shift ends at seven.
When questioned about "end of sift," the worker said they don’t have time to do it in the last hour. I asked by what stretch of the imagination could something be considered at the "end" if it did not even fall in the last 25%. She held on to her time constraint excuse and I went into calmly sarcastic conjecture of ill patients prescribed enforced bed rest then woken up at four AM for something by her own admission should be being done at six; that I could hear the staff hanging around the desk idly talking for the last half hour of each shift; and that if she got bedridden with illness I sincerely hoped she would see more consideration at whatever facility she ended up.
I am not a morning person.
In between the wake up and the conversation about shift ending, one of the nurse types emptied the portable urinal from the window sill, again did not rinse it and replaced it to the tray table. My reaction was immediate: "What is wrong with you?!" She did not see the problem, because she had put it where you can find it." I resisted telling her exactly where she could put it in favor of pointing out that if I left it on the window sill I could find the window sill, she did not rinse the bottle, and that I eat off of that table. She began to withdraw, but I loudly insisted that the table be thoroughly cleaned. I suppose that helped make me a difficult patient.
I was not inclined to get better when I heard the big reveal to my roommate: his doctor–who was not the self-worshiped deity named Paz–suspected the nature of his throat infection....

Heparin

Because the staff at Sturdy Memorial Hospital deemed the lame blind guy as a trip and fall hazard to be restricted to the bed, they injected heparin several times a day. This is a sulfur drug intended to prevent blood clots in people kept prone too long, and or have an IV in too long as clots can form at the TV catheter.
One of the nurse types started a conversation on Saturday by remarking that I was not bruising from the heparin at all, even at the stomach injection sites. She explained the heparin in that conversation. I asked if a medication meant to prevent blood clotting could have produced the positive side effect of lower than normal blood pressure. She said it very well could have.
On Sunday, when the bandage from the open and infected foot was finally opened, the previously dry toe abrasion had bled freely for the first time, through a diabetic’s reduced circulation and through the constrictive Charcot foot swelling. I figured the heparin was helping in a number of ways and had no complaints about the side effects.
Side effects of this drug can include fever and chills, which made the whole "cold blanket" debate with the nurses seem pretty sinister on their part, as if they gave a drug with those potential effects to a feverish patient then threatened temperature and anal sensor probing torture for kicks.
The potential side effects of lightheadedness, loss of balance or coordination, sudden weakness and leg numbness seems to make this either the most perfect or absolute worst thing to give someone deemed as a trip and fall hazard.
I am sure that before long, at least some of Sturdy’s staff had been wishing that the side effects of confusion and difficulty speaking or understanding would afflict me. Instead, I stayed sharp minded throughout my imprisonment.
I had no bleeding problems as can be common, including skin discolorations or foreign matter in other bodily fluids. I’m sure some of the staffers were wishing me to bleed due to my constant questions and concerns, which I had no shyness in voicing.
The problem came on the Monday morning when the nursing staff declared they had to draw a lot of blood, not just for the usual rounds of tests but because they had to type me in the event I needed a transfusion. Apparently, my hemoglobin counts and blood volume had fallen. I asked if this was due to the heparin. I thought it was a reasonable question in and of itself, especially considering what the other nurse-type had said two days before. This nurse type became defensive and told me flat out that heparin had no side effects.
I don’t respond well to people who lie to my face. As the next post will relate, that last day at Sturdy started badly and the lying woman just added fuel to the fire of my soul. I not only let her know that I knew she was lying, but questioned if all the blood they had leeched out of me that weekend would have reduced my blood volume, and pointed out that taking "even more than normal" amounts of blood because the blood volume was down is an absolute absurdity.
I was more than she could deal with and she retreated.
Really, in response to my question of the potential heparin connection to the blood volume, she could have said "maybe" or "I’m not sure" and I would have resigned myself to the situation without a confrontation.
Why is it that people who choose to lie react so badly to being called out?

As Heard on TV

I say "heard" and not "seen" because I can no longer really see the TV in any detail. I can’t see it because of the very thing by the very people that was being advertised: PRP laser surgery by Koch Eye Associates.
PRP can cause the very problems it is supposed to prevent. My left eye blindness started with a vitreous hemorrhage triggered by a dose of Cialis. It became permanent blindness in what my current eye doctor called "the most complicated eyes" she had ever seen because Koch Associate Michael O’Brien had scared me into the procedure with the haunting question, "But what if it wasn’t the Cialis?" The hemorrhage happened about 16 hours after I took the Cialis. I don’t believe in coincidence, but got scared of the possibility that I could be wrong.
Peripheral loss was almost immediate. I had my first flashers after the third of six PRP sessions. .Light sensitivity increased and night vision decreased. Over time, the peripheral closed in and floaters–another form of hemorrhage became regular occurrences. Two yeas after the period of PRP sessions, retina reattachment surgery performed by the excellent Dr. Krzystolik of Southeastern New England Retina failed to improve my vision.
I had a vitreous hemorrhage, not a retina problem related to the diabetes. My retina and eye condition were stable. The PRP made it unstable. I would have fully healed from the vitreous hemorrhage and would be able to see if I had not done the PRP laser treatment.
No less than three other doctors over the preceding decades had tried scaring me into PRP with the warning "You will be blind in six months if we do not do this surgery." I think that beyond being the scare tactic that nets patient money, this is the catch all of liabilities for the quacks. If you start to lose your vision to advancing retinapathy after PRP sessions, the doctor can shrug, say sorry, and tell you "You waited too long, so we were too late to prevent it." And from experience, Koch Eye Associates will check on the status of your bill and outstanding payments before you leave.
I find the TV commercial upsetting because it was directly advertising PRP. It was not advertising the importance for diabetics to have regular eye exams. It did not give information about the warning signs of active retinapathy. The ad herds people right for an expensive and profitable procedure that can cause precisely what it is supposed to prevent.
No one at Koch warned me about the risks I had cataract surgery also with Koch in between PRP sessions and no one warned me that the cataract procedure can also trigger retinapathy. Since my last appointment two-plus years ago, no one has ever called to see how I was doing.
One scholarly site had this to say about good ol’ PRP: "Scatter laser photocoagulation has been shown to reduce the risk of severe visual loss from proliferative DR. However, scatter treatment is associated with some decline in visual function. These effects should be studied more extensively and should be considered when comparing pharmacologic treatments for proliferative DR." I don’t think there are many doctors eager to prove the negative effects any further. That could only result in decreasing the profitable business of PRP treatments.
Don’t just take my word for it. Here’s some of the sites I referenced.
http://www.medfusion.net/templates/groups/5500/9575/ericmann-prpfordrp.pdf
http://www.ncbi.nlm.nih.gov/pubmed/17891003
http://www.omicsonline.org/2155-9570/2155-9570-2-149.pdf
This diabetes forum site has mixed reviews and opinions.
http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=19&t=24243
I have no doubt that PRP can be a crucial procedure for some patients, but emphasize that it can be crippling to others. The key strikes me as how stable the patient’s eye is. The best way to determine this is for exams with photographs by the same doctor three to six months apart. If the doctor cannot show you active areas of bleeding in comparing the photographs. You are better off resisting the doctor’s urge to profiteer on your pain and suffering.
The Koch commercial was not pitching exams to diabetics, but the procedure itself. There’s reason for wariness in that.

Toeing the Line

After slinking away from my harsh refusal to indulge his god complex, Dr. Paz did call in a surgeon to look at the infected toe.
The toe had brought me to Sturdy Memorial Hospital, but after the Friday Night ER admission, it seemed to be ignored in deference to my being diabetic, and I am sure that the toe’s condition instigated some finger wagging of "bad diabetic."
As a diabetic, my circulation does not equal a healthy person’s. I know that, and also know that the side effect is pretty inevitable. I apologize if you’re reading about the inevitability for the first time here; your doctor may not have told you for fear that you would surrender to the inevitable and not take care of yourself. If you’re diabetic, know this now: doctors lie.
My diabetes was never as bad as my numbers–A1C peaking at 16–say it should be. But I had developed Charcot Foot, which passed in and out of Phase One twice. The relapse of the massive swelling further reduced my circulation and the infection, in most likelihood, would not have developed without the Charcot.
Dr. Paz had obviously warned the surgeon about what a hole I am, without tempering the situational truth with how Dr. Paz himself had drawn forth my rougher aspects. The surgeon approached me with an attitude, even while I regarded his arrival with relief. Unfortunately, the surgeon, whose name I don’t remember in part because he ended up doing nothing, harbored his own god complex.
The surgeon looked over the toe, which necessitated the first bandage change in a day and a half. He looked over the Charcot foot. In his godly wisdom, he decided he would take the infected skin off the oe, and would probe the massive swelling that was the tendon that runs on the inside of my foot. I readily agreed to the former but refused the latter.
"We have to know if it’s infected," he insisted.
Told him that the non-toe swelling had been previously diagnosed as Charcot foot. His willingness to stick something into the Charcot swelling told me that he did not know much or anything about that. "No offense, I said, "but the Charcot is known for getting infected by well meaning doctors who either culture it or try to mechanically reduce the swelling. If you do that, two months from now, you’ll have forgotten all about me and I will be having my foot amputated. The toe needs care, but you are not going to stick anything into the foot."
He must have been thinking "Paz was right. What a hole." Because he could not do everything he wanted to do, the surgeon left me without doing anything, including replacing the bandage.
A nurse asked me about the incident a short time later. I asked he if she had ever heard of Charcot foot. She said she had "heard of it." I emphasized to her that most medical people, like her, had only heard of it and that the highest incidence of foot loss directly from it was when well meaning doctors broke the skin at the swelling. I had researched it and would minimize those risks myself.
I had been told that Sturdy had no podiatrist on duty that weekend. After the incident with the surgeon, one appeared, Martin Harris of Plainville, Massachusetts.
Dr. Harris cut away infected skin, determined that the infection had not reached the bone, and removed the toenail, which had pretty much detached itself anyway. He rebandaged the foot.
He also told me that I had been 100% right in stopping the surgeon from probing the tendon with the clear prediction, "It probably would have been a lot sooner than two months before they’d have to amputate."

Be-pazzled

Day Two of "consultation" with Dr. Paz went differently from Day One. That is to say, it went worse.
I will take some responsibility for being in a peevish mood to start. It was convenient for Doctor Paz to do his rounds at breakfast.
The hospital stay with arbitrarily restricted movements made me understand the boredom of house cats, how every part of the day is an event. The doctor visit should have been separate from a meal, particularly breakfast, which didn’t have much chance of still being warm from the trip from the kitchen to begin with. Instead, Paz arrived right after the food and wanted full attention. Getting medical attention–even the bandage changed–had been difficult enough that it did not seem prudent to ask him to come back later. I have no doubt that being considered more important than food feeds his ego.
The man himself immediately overwhelmed any irritation I had about his timing. I started with a reasonable question that should have been answerable after two days: what type of infection did I have?
He answered, "Well, usually infections like this are..." and he used a $12.00 medical jargon word that meant "multiple sources of bacteria."
I made it clear that I did not care what these things usually are and wanted to know what I had. His response was to ask if I "even" knew what his big word meant.
The arrogant display of God Complex pissed me off. I defined his word for him, pointed out that he had not answered my question, and that my only interpretation was that he did not know.
He said that not all tests had been returned but that the blood culture showed that I did not have a widespread blood infection. His answer to "Why couldn’t you just say that?" was to stare blankly.
He also could not adequately answer my questions about the change in my basic insulin regimen from reliance on time release insulin to total use of only instant-acting regular insulin. He started with generalities about the instant only theories of treatment, but had no answer to the question of why he would make such a change in a patient he had never known. I can and would have readily accepted changes in the amount of insulin, but not a switch in basic regimens.
He basically resorted to manipulation by informing me that if I was not happy with him as my doctor, I could request a change. I told him that I was a proactive and involved patient and that if he could not deal with that, he could assign me to someone else.
I made sure he knew that I expected bandage changes on the infected toe. I had been admitted Friday night and this conversation on Sunday morning had no bandage change in between, I made it clear that the nurses adamantly maintained that they could not do a bandage change without specific orders from a doctor and wanted to know how such a basic thing that was the reasdon for my being in the hospital had been overlooked while less important things like my insulin had been changed.
He resorted back to my options if unhappy with his care.
I was out of patience with the manipulation and the God Complex by then. Fully and completely out of patience. I told him that I had not seen any real care from him and that if his godhood could not deal with patients who asked questions, that he needed to transfer me to someone else and explain the shift to his hospital supervisors, but that I knew he couldn’t do that because "you are not a very honest man."
He walked away from me after that. I know from asking nursing-type staff that he was still officially my doctor but I saw or heard nothing from him for the final 24+ hours of my stay at Sturdy.
My fellow inmate complimented my ability to stand up to a doctor who he agreed had been being cagey in answering questions and wished he could be more like that.
I reminded him that there’s always a cost to being like me.