EDITOR’S NOTE: Jim Chud is an expert in artificial intelligence and an architect and has a master’s in psychotherapy. Chud, who has been HIV positive for more than half of his life, has served on WeHo’s Disabilities Advisory Board and on the L.A. County Commission on HIV. He also has launched a non-profit, AdvanceAbilities Inc., whose mission is to chronicle the stories of disable seniors in the United States and also to provide tools to help them better experience life. In October Chud received an Access Award from the L.A. County Commission on Disabilities. In this essay Chud talks about his own experience with opiate addiction and treatment services. Drug use is an issue in West Hollywood, where data from the L.A. County Fire Department shows 163 responses to drug overdoses from October 2016 to September 2017. A count by the L.A. County Coroner’s office shows 691 drug-related deaths in Los Angeles from Oct. 10, 2016 to Oct. 10, 2017, nine of which occurred in West Hollywood.
There has been a great deal of news recently about the opiate crisis in America – it’s been truly wonderful to see the truth come out. There is another part of the equation that is missing, and that is the lack of reliable, accessible detox and addiction cessation treatment for everyone. It’s fine to finally have hard evidence of the malfeasance of drug distributors and manufacturers in the recent addiction and overdose crisis. But if there is nowhere to go that really treats addicts as patients in need of help, then what’s to stop them from going right back to whatever they were doing after ‘an interruption’ and nothing else? My personal experience with treatment centers and drug addiction is a very long story. However, I can talk about my opiate misadventures here and will hope that it helps someone help themselves.
My name is Jim, and I am a drug addict. I used to say that at least once a day for many years, and even though I haven’t been to a 12-step meeting in several years, it doesn’t mean I let my guard down. With all of the surgery in my past and recent past, I have had an issue with getting providers to understand how bad it was and how serious I am about my issues. Thank God that my d.o.c. (that’s drug of choice) was not in the opiate family.
In late 2000, after taking what I considered my “dream job” after several years of fighting with sobriety and finally getting two years of clean time together, I walked into my boss’ office. He had had to fire me several years back because I desperately needed to get sober. He looked up at me, smiled and shook my hand, welcoming me to the company.
Then he said something very important. “Jim, you know you have always been a great addition to my department, both with your talents and your ability to bring people’s morale and participation up when the chips are down. If I didn’t believe that, you would not be sitting here today, but let’s get one thing straight from the start, this is not going to be about taking care of Jim Chud this time. One slip-up and you are out. Period.”
I was a bit teary-eyed at this point and wholeheartedly agreed with him. I told him how I could not believe I was sitting there either, and how grateful I was to have a position that was where I would be if I had never left work, and that he could count on me. Four days later, he was canned, and a month later I was offered his job. The reasons for that are not important to this story, but I now felt 10 times as responsible to not screw up. That was fine – until I went for my first check-up with a new HIV doctor.
I had a sinus infection that had been like a nagging, low grade, allergy flare-up for over a year, and my new doc ordered the standard diagnostic tests that my former doc thought unnecessary. Two nights later, at 9 p.m., I got a phone call. After beating my Jack Russell Terrier, LD, to answer the phone, (he loved answering the phone – almost as much as he loved expensive sunglass chew toys) all the person said on the other end was: “Is this Jim, now sweetie, we’re going to get through this.”
“Who is this?” I asked, and he said he was my new doctor and repeated his first line. He then explained that I had a very widespread fungal infection in the bone around my brain and in my sinuses, and that I had to start on a daily infusion of medication – Amphoteracin B (good old ampho terrible – as it was called in the early years of the AIDS epidemic.) I remember that every time I saw someone with one of those bags or bottles hanging over his bed, I thought that I probably would never see him alive again. I thought I was losing my mind when my doctor said that. I didn’t feel like I was dying or anywhere near so, this just wasn’t making sense.
Ampho is a thick electric yellow fungicide that goes in via a PICC (Peripherally Inserted Central Catheter) line over a period of four hours. That was the good part. The bad part was that I had to be premedicated with anywhere from 50 to 200 mg of Demerol and sundry other drugs including Ativan and Benadryl by IV every day to tolerate the medication. I told my doc that I simply could not do that because of my addiction history. Like too many after him, he said, “don’t worry Jimbo, we’ll get you through this. Besides, you would not like the alternative.”
After the first infusion, I knew I was sunk. This was the only medication that worked against the fungus, which it did along with eight operations to dig out the infected bone and reconstruct my forehead and five months of daily treatment. Yep, I had once again survived another challenge that previously was considered fatal. Oh goodie, sort of. God bless Aditi Mandpe, M.D. and her colleagues at the Otolaryngological Surgery Department at UCSF. They, through their deft technique, saved my life.
Just as I was being wheeled into surgery, Dr. Mandpe told me that she had forgotten to mention something, that she may have to take my right eye. As we arrived in the operating room, it dawned on me what she had said. I was already a little sedated at this point, and I said “wait a minute, you will give it back, right?”
“No,” she said, “if we take it out we can’t put it back in.”
I started to say something, and the next thing I knew I was in the recovery room, and I checked to see if I still had both eyes, which I did. Phew!
There are a few gotchas here. First, after proving that I could not be trusted with a two-week supply of Demerol in my home, I had to report to the infusion center in the small hospital adjacent to my doctor’s office every morning for my medication, and was supposed to wait two hours after the infusion before leaving and driving myself home for legal reasons. The day that I decided I was in a hurry, I had a slow-motion auto accident that was completely my fault. For whatever reason, the people I hit saw my condition and took pity on me and decided to forgo any reporting or information exchange. I was two blocks from home, and they accompanied me to my home and helped me get into my apartment.
It’s the other gotcha that is hardest to describe. One day, shortly after arriving at my infusion room, my new dentist showed up. The man I was dating at the time introduced us and went with me to my first appointment, The dentist had an amazing teak-paneled waiting room and a practice suite built in the woods behind his home. He worked on Sundays and did decent work, and my ex’s recommendation convinced me to give him a try. I was quite impressed, and during our chit chat, while my ex played the “Beckstein” grand piano in the waiting area, he did the work I needed.
It seemed odd that the dentist would visit me so soon after meeting or at all, but he said he was seeing his HIV doc, who worked in the adjacent office building, and just decided to drop by and say hello. At the time, I was having a lot of neck pain, and he told me that he was a certified massage therapist and would try to give me some relief if I wanted. I said sure. He was clothed, and I turned on my stomach, and after about a minute of him working on my neck, I fell asleep as I did every day after my initial dose of Demerol, etc. The staff woke me later that day, and informed me it was time to go and that “my guest’ had long ago departed.
The next morning as I entered the center at the usual time, the director bellowed my name. “Mister Chud, come in my office immediately.”
So I did. As soon as I sat down, he started ranting that “this is not a bath house, and we do not allow sexual intercourse with our infusion patients, do I make myself clear?”
I was so shocked that I paused and told him I didn’t know what he was talking about. He next informed me that the staff had watched me be on the receiving end of intercourse, and had ejected my little (dentist) boy friend. I was totally unaware of this having gone on – I was zonked out.
I discussed this with the director and convinced him that I neither encouraged nor remembered any of that, and was so outraged by what happened that I tried to call Mr. Dentist several times to no avail, then his phone was disconnected after several days. My ex- had been out of town, and when he returned, he informed me that the dentist had taken his own life allegedly because his ‘partner’ of 20 years left him. For several years, I was so angry, mostly about being so stupid. Those feelings went away about three months ago, when, miracle of miracle, the now relocated and resurrected dentist had the gall to contact me as he saw me on a social media site, as if nothing had ever happened. I can tell you this, even after getting my answers answered, and choosing not to confront him at the time, I will never feel OK about this. I just feel like my personal safety has been changed forever.
I decided to include this incident because not mentioning it in the current wave of sexual assaults and people opening up, it didn’t seem appropriate to avoid it any more.
After two months of my daily treatment, I could no longer stand the time between treatments. Even though I hated the way Demerol made me feel, I had to have it every day – actually I wanted and craved it every day. The ensuing relapse lasted a few long months and set my psyche back 20 years. I have never abused anything since that ended in 2002, but the first years were a real drag. Then, joy of joys, came the barrage of surgeries on my spine and other joints.
The absolute worst situation occurred when I started having severe lower back pain. I dutifully went to my spine surgeon, and he took the routine x-rays, and it showed nothing was wrong. My pain kept growing and growing, and I was sent to the director of the pain center at my hospital, who every two months would give me useless injections in my spine’s base, and up my pain meds a little each visit.
The pain got so bad that I could no longer wear ‘briefs’ under my pants, and my pants had to be 48″ waist or larger so that they did not so much as brush against my lower back. I wore suspenders for the first time.
This situation hit its crescendo after over a year of having this pain, when one morning I bent over in the shower to pick up the bar of soap on the floor, and a loud pop happened. It didn’t hurt, but it scared the hell out of me, and there was a big new lump near the base of my spine. I was certain that I had broken one of the rods bracing my spine and went to the doctor. After refusing to rub his hand over the bump — something that to this day I will never understand, he told me that I was imagining things, and nothing was wrong. Off to the pain doctor I went. My level of daily opiate consumption, which had absolutely no effect on me, was absolutely absurd. Here is the list at that point:
Methadone — 120 mg/day. Fentanyl —two 100 microgram patches changed every two days. (This was the highest potency patch available at the time, and I was getting twice the maximum recommended dose). Oxycontin 80 mg. three times a day. Oxycodone — 40 mg. four times a day. And for breakthrough pain — as if there were such an animal — 2 mg Dilaudid intravenously three times a day. If you know what I know now, this is a totally lethal dose for anyone who was opiate naive. I had been ramped up to this and would have gone higher if the following events had not happened:
After the “pop” incident, I returned two weeks later and asked the radiologist to rotate me 45 degrees before taking the same films over. All she could say as the image appeared was “Oh…Oh….” She was crying at this point. “I am so so sorry, you must be in so much pain.”
I asked her if I could see the film, and after looking around to see that no one else saw me, she said “Oh what the hell, it’s the least I can do.”
Well I walked over to her display — nine-tenths of my spine between the first and the third lumbar vertabraes was black, as in infected. I was so angry and relieved at the same time — and kept thanking the radiologist for believing in me ,and I went to my exam room for the doctor, steaming!
He came in almost breathless saying “Mr. Chud, we have a serious situation and you must get yourself off all those pain meds before I can operate .” Blah blah blah. And I just stared at him and said “Gee. Really? What a surprise.”
He looked at me in a defiant pose saying “What — what — what do you want?”
How about starting with “I’m sorry” or “I should have listened to you” or something along those lines? Whatever he said, nothing would change the situation now. I asked him how he suggested that I “get myself off those drugs.” He insisted that the pain center would take care of that and walked out.
When I walked back up to the director’s office in the pain center, he handed me an article — oh goodie — he had been reading. He had just discovered that all those things that he had been giving me were probably not working . Again, I had another of those “Gee, no kidding!” moments. He had moments earlier discovered this article talking about “hyper-algesia” and that I was hyperalgesic. So he prescribed this insanely slow decrease in my medication, which would have meant I would have my surgery in about a year’s time, long after my spine had been eaten through. I managed to get down to just the methadone — and eliminated 20 mg. of that each day in six weeks.
Let me tell you, even though they were able to successfully sedate me, the post-op pain was absolutely unbelievable. Added to that was the lack of communication between the pain department and my nurses that at times made getting any pain medication impossible. There is such a tendency of nurses to assume that one is “med-seeking” that whenever one asks for more pain meds, the reaction is barbaric. Unfortunately, many times I asked them to call the pain team for confirmation of what I could have, and many times they refused and said they didn’t have any written orders for more pain medication. Oh, by the way, that last statement was a lie. Not only was there a prescribed protocol for increasing my meds, there was an absolute order to call them if I needed more medication. This particular hospital has completely changed its methods as now all orders for pain medication are put on a white board in the room in plain sight of the patient. There is also the phone number of the pain doctor just in case. I can’t say it was because of my letters and personal complaints to the director of nursing — not to mention our one-on-one meetings to discuss these things. But I will bet that my complaints and those of others who corroborated my story influenced changing things. The lesson here is being your own advocate.
This is not a “boo-hoo poor Jim” story at all. If my story was unique in its description of the misapplication of pain meds and the current mindset of many nurses and doctors regarding the immediately dire consequences of delays or egos or prejudice interfering with a prescribed regimen, I would not have bothered telling this.
After I finally was discharged, I decided to go to a treatment center in the San Fernando Valley that I knew would detox me off the remaining methadone and that had fully funded beds for people with AIDS. I mistakenly believed that I would be out of there in three weeks max. When the doctor doing my intake sorted out how high my level of opiates had been, he looked at me and said — ”Oh my god, you are going to be with us a long time.” I was totally puzzled, and he explained why it was going to take so long.
Until the last 14 of my 72 days in detox, things were manageable as their evil queen bee nurse “Laurie” was on vacation. Everything changed with she got back. This woman reeked of anger, resentment, envy, pride and a tendency to abuse the power that her position conveyed that was nothing short of sickly malevolent. While the medical director and the unit operations director treated patients like people, she started at “dirty little addict” and it went up or down from there, depending on much one pandered her.
The nurse in charge until her return, and Miss L’s supervisor, was great until her return, then everything changed. “Laurie” is very tall, and I would venture to guess not a happy person in general, and as she came in on the tail end of my stay, she assumed several things that simply were not true.
I had self-admitted, meaning I wasn’t sent there by anyone including the state’s Prop something or other, nor was I in the throes of beating my drug of choice. I wanted help getting off the pain meds. No one had told me to do so, I just wanted to feel normal again. From time to time, I, like everyone else, was being detoxed too fast, and went into shaking withdrawal. Even though the order was written to give me a “stat” dose — meaning an immediate 1 mg. oral dose to calm the shakes, she would act as if she could not have cared less.
One had to sit at this desk in view of her elevated glassed in throne-room, while she would trim her nails, re-apply her lipstick, whatever, occasionally gazing at the stat-order and after, oh, after a period of three to four hours, she would allow the medication nurse to give the dose. If you so much as looked at her, much less tried to get her attention, she would quip “nurse gets annoyed when you ask her things — and that just slows down the process.”
It was so barbaric, it’s hard to believe she hasn’t had her credentials revoked. I am sorry, but I maintain that browbeating is NOT necessary to detox someone. I admit, there was enough nefarious crap going on there to sink a ship, and people had a code of silence, lest you get beaten in your sleep. But just being cruel to anyone, especially since they are there for you to help them, is inexcusable.
At about a dose of 1 mg. a day, I started having severe pain at my incision site from my last operation. I had to be admitted to the local hospital, which ended up keeping me a week. I kept telling them to just look at my incision, and even the “special surgeon consult” called in refused to do so, saying that my problem was either a kidney stone or in my bowel, and I had a battery of gastrointestinal tests that yielded nothing. The bottom line was that everyone at that hospital kept me at arm’s length for several quite unfortunate reasons: Where I was sent there from, my AIDS diagnosis and because of my rich medical history. You know, it never ceases to amaze me how reluctant and scared surgeons are to touch anyone else’s patients, lest they be sued for something that was really the other surgeon’s doing. Something needs to change in our medical system. Well, many things do – this is just one.
It is way past time to be okay for doctors who make mistakes, like other humans do, to admit having done so and apologize rather than treat patients like they are crazy because nothing is wrong with them. There is only one problem with that scenario, Something is wrong, and patients like myself are abused. Until we can all be equals in the equation, this problem is going to prevail.
When I went back to detox, the entire sequence of detox/pain events repeated (gee what a surprise). That “the experts” at the hospital found nothing wrong made me seem like a drug seeking liar to the treatment center staff. Once again, I was told that “I am not a doctor,” so I could not possibly know what was going on in my own body. Queen Laurie pulled me aside saying “Now Jim, people get scared to leave our safety here, but its time…”
I almost leapt at her throat when she said that, but thinking it better to just agree and get the hell outta there, I agreed with her and left. I went to the good old pain doc the next day, and he ran his finger along my surgical scar, and when he hit a small bump, I shrieked in pain.
“Oh, I know what you have — it’s a neuroma. The vascular surgeon sewed a nerve into your wound, let’s get you into the treatment room and I will oblate it (burn it out with sound waves).”
Thirty minutes later and the pain was gone. I was actually off all pain meds for a week, when, after a routine spine exam, I was back in the operating room having another spine repair. So, all was for naught.
Today, I am still on a constant daily dose of Methadone — lower than before, but it’s there, and I feel it. I once again tried to detox myself, and at this point, several years later, I really have so much chronic pain, that doing so makes no sense…and so it goes. Both my pain and primary care physicians forbade me to ever detox myself again. I see the new battery of ads for treatment, now that in California insurance is required to pay for it, and they scare me. In the throes of detoxing, advocating for one’s self is near-impossible. Make sure that someone you trust keeps their watch for abuse.
With the current state of healthcare in America changing almost daily, and the barrage of advertising for treatment, there is a warning I must give. Despite there being an “ombudsman” one can contact during treatment, if you have a problem you aren’t going to be able to stand up for yourself when you are detoxing while buried in what others see as the shame of “yet another relapse.” The moment you enter one of the many treatment centers vying for your insurance company’s treatment dollars, you are in the worst state possible to be able to make decisions for yourself. All of these places realize that. And many — not all but many — take advantage of that situation. Despite the instructions from various centers warning against too much contact in the early days, until you build a level of trust with the people and program involved, its’s best to have someone keep a close eye on you.
Abuses can happen in the most expensive and least fancy treatment centers alike. Having been to both ends of that spectrum, I can just say, please take care. I want to see people get better, and until there are enforced standards that are actually practiced across the spectrum of providers, it’s best to be wary. I’ll spare you those stories for another time – perhaps in that book I’ve been writing forever if I ever get it done.
Blessings to all.