Since I am largely wheelchair bound now, the idea of shopping, of loading into a car, becomes less appealing. I do like to get out and remain active and fit, but any unnecessary voyages out are questioned. Gary's excellent ramps are helping me reach the long- ago-set goal of circling the block each day in the chair while also circling the house with a walker. Shopping online has become easy and, so I will have a largely electronic Christmas. My Department of Shipping and Receiving gives thanks that we will say goodbye to some of the Santa-sending duties, but generally, elves are upbeat about the changes. Thanks to all working the front lines of Christmas 2016.
Peter may receive some vinyl since his 50th birthday present was a turntable, which I could then buy records for as presents in perpetuum. Tom is getting a membership to a beer club, which promises to surprise him with unknown ales for several months. My way of keeping my hand in the refrigerator.
Thursday, December 15, 2016
Thursday, October 27, 2016
Aptos
Aptos is the beautiful town near Santa Cruz where my wife's family co-owns a beach house. We went there for indigenous Peoples' Day to celebrate Karen's birthday. Michel took the day off to pick us up at San Jose Airport and took us to the Wylie's house, where we got Karen's car and repacked for the short drive to Santa Cruz; it was Friday, so there would be traffic. (The airports were busy, though the plane was sparcely populated. They encouraged us to check the wheelchair at the counter, although we didn't get the message oil we whereat the gate.)
Michael was a great aid all weekend, helping me get to and from a bathroom with limited access each morning and evening. The sunsets in Aptos are like messages from God, whether or not you Believe. Even a concise sunset here can remind the viewer that she's at the end of something, and so reflect more deeply. Evan and Luke had hours of beach play. Kathy Sure and Doug O'Neil stopped by, and Sue Sargent stopped in with son Owen.
Michael was a great aid all weekend, helping me get to and from a bathroom with limited access each morning and evening. The sunsets in Aptos are like messages from God, whether or not you Believe. Even a concise sunset here can remind the viewer that she's at the end of something, and so reflect more deeply. Evan and Luke had hours of beach play. Kathy Sure and Doug O'Neil stopped by, and Sue Sargent stopped in with son Owen.
Tuesday, October 25, 2016
The Olympics
The Olympics are an opportunity for anyone to binge-watch television. Someone trapped in a wheelchair is quite susceptible. Good Morning America hosted the morning from the beach in Rio segued right into the games for anyone wanting to watch non-stop.
On first was long-distance bicycling, navigating between the hills along the waterfront. Then we saw beach volleyball and rowing in skulls for 1, 2, 4 and 8 rowers. Water polo got a lot of time early on. Gymnasium volleyball was the most fun to watch, mixing speed and reflexes. Billy Bush was there, riding biplane through the forest and acting out with Winter Olympian Johnny Weir to describe this flamboyant city. Jenna Bush was also there, making it feel like a Bush-family vacation. Somebody owed somebody airtime, in this Bush Entertainment Tonight World, we only live in it.
Swimming was reserved for the evenings, featuring the Michael Phelps Show and Katie Ledecky's amazing performance. Diving, horseback riding, though not at the same time, even synchronized swimming, got airtime. There was something for everyone. Except Billy Bush, who appears to have lost his gig with NBC over fallout from his Trump recording.
On first was long-distance bicycling, navigating between the hills along the waterfront. Then we saw beach volleyball and rowing in skulls for 1, 2, 4 and 8 rowers. Water polo got a lot of time early on. Gymnasium volleyball was the most fun to watch, mixing speed and reflexes. Billy Bush was there, riding biplane through the forest and acting out with Winter Olympian Johnny Weir to describe this flamboyant city. Jenna Bush was also there, making it feel like a Bush-family vacation. Somebody owed somebody airtime, in this Bush Entertainment Tonight World, we only live in it.
Swimming was reserved for the evenings, featuring the Michael Phelps Show and Katie Ledecky's amazing performance. Diving, horseback riding, though not at the same time, even synchronized swimming, got airtime. There was something for everyone. Except Billy Bush, who appears to have lost his gig with NBC over fallout from his Trump recording.
Monday, October 3, 2016
Falling
The main enemy has been identified as Falling, and we're doing everything we can to avoid unnecessary falls, especially in bathrooms and other hard surface locations. The first round of falls, all surprises, were about 2 years ago or more, and happened outside of the house. Then, having gotten hip to that attack, I started falling inside, in what had been familiar home territory. No longer safe. The 911 call which sent me to the hospital was viewed as a possible stroke until more recently, when we understand it as a low blood pressure moment so typical of MSA until diagnosed.
My GP had prescribed midodrine for low blood pressure, but it is more of an automatic drug, raising the BP even when unnecessary, causing BP spikes, while true MSA medicine like Northera has built-in pressure regulation in it, although Northera comes with hypertension warnings.
We were having water heater problems earlier this year, and I thought I'd go downstairs to either light the pilot or else the water heater had been already replaced and I wanted to see some of the excellent wood-replacent repair that Gary Smith had done. He replaced the heater after re-glazing the tub and installing grab bars in the bathroom. I thought I'd descend the small staircase outside our house on foot, leaving the walker at the top of the stairs and holding the wall and a railing, overgrown with jade plant, for support. The problem was that, as my balance shifted and I reached out for firmly-planted rail, all I found was jade to grab, which tore away and sent me flying heels over head, down to the bottom, where I fortunately did not stove my head in on a step. There was enough dead plant material and combined with my spin and velocity, I landed crumpled on my shoulder. Try as I might, I couldn't get myself up and had to yell upstairs for help when Pamela returned from walking 20 minutes later.
Falls have been sporadic, maybe monthly, and of softer landing than before, often controlled when I already realize I'm going down. The new wheelchair has required some getting used to, with a much easier tipping point for falling out of the chair. My balance is crocked and my back feels broken after a year in the hospital-issue Drive chair. I have slid out of the chair while reaching for something and landed with a smack to my head as I keel over forward, but then I also fall into the bedside bookshelf from bed, my lower back is that weak. I should be proud that I haven't had any major falls or broken bones especially now as I enter a phase of the illness where it appears to have taken much of my ability to walk. I must really be careful with transfers and other trial behavior, like reaching. I am better off asking for help, putting on pants say, than tipping to ground while doing it myself.
My GP had prescribed midodrine for low blood pressure, but it is more of an automatic drug, raising the BP even when unnecessary, causing BP spikes, while true MSA medicine like Northera has built-in pressure regulation in it, although Northera comes with hypertension warnings.
We were having water heater problems earlier this year, and I thought I'd go downstairs to either light the pilot or else the water heater had been already replaced and I wanted to see some of the excellent wood-replacent repair that Gary Smith had done. He replaced the heater after re-glazing the tub and installing grab bars in the bathroom. I thought I'd descend the small staircase outside our house on foot, leaving the walker at the top of the stairs and holding the wall and a railing, overgrown with jade plant, for support. The problem was that, as my balance shifted and I reached out for firmly-planted rail, all I found was jade to grab, which tore away and sent me flying heels over head, down to the bottom, where I fortunately did not stove my head in on a step. There was enough dead plant material and combined with my spin and velocity, I landed crumpled on my shoulder. Try as I might, I couldn't get myself up and had to yell upstairs for help when Pamela returned from walking 20 minutes later.
Falls have been sporadic, maybe monthly, and of softer landing than before, often controlled when I already realize I'm going down. The new wheelchair has required some getting used to, with a much easier tipping point for falling out of the chair. My balance is crocked and my back feels broken after a year in the hospital-issue Drive chair. I have slid out of the chair while reaching for something and landed with a smack to my head as I keel over forward, but then I also fall into the bedside bookshelf from bed, my lower back is that weak. I should be proud that I haven't had any major falls or broken bones especially now as I enter a phase of the illness where it appears to have taken much of my ability to walk. I must really be careful with transfers and other trial behavior, like reaching. I am better off asking for help, putting on pants say, than tipping to ground while doing it myself.
Wednesday, August 31, 2016
Prions
Prions are proteins that accumulate in the brain, fold upon themselves and gum things up, causing miscommunication and other dysfunction in diseases like MSA. Prion irregularity has been likened by researchers to Mad Cow Disease, where a sheep-born brain spongeforma infects cow parts (fed sheep remains) and then crosses over into human subjects through consumption of beef products. Seems as likely a way to contract brain spongeforma as any. I don't eat beef, generally, but I did live in Moscow, Russia for 2 months of 1992 and may find myself subject to some bacteriological war during that time. I ate whatever food I was given in Russia.
A more likely cause for the accumulation of prions has been the misfortunate use of nickel-chromium in my dental work. I had a stainless cap (nickel-chromium) from the age of 12, then graduated to a stainless bridge from about age 25 to 35, when I finally had the sense and good advice to pull it out and replace with white gold, after taking a "materials sensitivity test". But the damage had been done, I knew that the stainless equipment leached metal into my body and brain, I saw the aftermath of staining to what was left of my teeth when the bridge replacement was underway. My most recent dentist remarked, after I asked him if I could expect any problems from nickel-chromium toxicity, that there could be "quality of life" issues. MSA is one hell of a quality of life change.
I am excited to hear that they will do a trial into the efficacy of Nilotinib, a chemo drug used on leukemia and thyroid cancers, at Georgetown University Hospital in the near future. They already tried Nilotinib on Parkinsons patients with some good results.
A more likely cause for the accumulation of prions has been the misfortunate use of nickel-chromium in my dental work. I had a stainless cap (nickel-chromium) from the age of 12, then graduated to a stainless bridge from about age 25 to 35, when I finally had the sense and good advice to pull it out and replace with white gold, after taking a "materials sensitivity test". But the damage had been done, I knew that the stainless equipment leached metal into my body and brain, I saw the aftermath of staining to what was left of my teeth when the bridge replacement was underway. My most recent dentist remarked, after I asked him if I could expect any problems from nickel-chromium toxicity, that there could be "quality of life" issues. MSA is one hell of a quality of life change.
I am excited to hear that they will do a trial into the efficacy of Nilotinib, a chemo drug used on leukemia and thyroid cancers, at Georgetown University Hospital in the near future. They already tried Nilotinib on Parkinsons patients with some good results.
Friday, August 26, 2016
Bradykinesis and The Pisa Effect
Dr. Lisk saw my symptoms of Orthostatic Hypotension (low blood pressure) and Neurogenic Bladder (incontinence due to improper autonomic response) as evidence of MSA, declaring me a posterchild for the disease. He presribed Northera for the OH and for Neurogenic Bladder he prescribed Myrbetriq, which was so expensive that my insurance recommended an alternative, specifically Trospium. both bladder medicines have worked; I did eventually get the OK to try Myrbetriq. Both medicines seem to slow the system, which is already a problem with low blood pressure. It's called bradykinesis, and it describes the slowing down of any system that is meant to move stuff along, like circulation or elimination.
The Myrbetriq or Trospium adds a bit to the slowing effect, so one can sleep through the night, or most of it, without having to get up and use the restroom. And that's what MSA ends up being, a management problem of bathroom visits, diaper changes and medicine administration. I try to keep food and eating as special as possible, but you have to be careful with everything you eat and drink. It's important to drink lots of water, but too much water makes for too much bathroom time. I must be careful about parties and holidays not to eat to much, as that translates into bathroom time and surprises.
Another recent symptom or syndrome involves leaning over or listing to one side called, remarkably like a detective movie, The Pisa Effect. So Parkinson's patients often lean to one side. As a young super8 filmmaker in Italy, my first film was of that tilted tower.
The Myrbetriq or Trospium adds a bit to the slowing effect, so one can sleep through the night, or most of it, without having to get up and use the restroom. And that's what MSA ends up being, a management problem of bathroom visits, diaper changes and medicine administration. I try to keep food and eating as special as possible, but you have to be careful with everything you eat and drink. It's important to drink lots of water, but too much water makes for too much bathroom time. I must be careful about parties and holidays not to eat to much, as that translates into bathroom time and surprises.
Another recent symptom or syndrome involves leaning over or listing to one side called, remarkably like a detective movie, The Pisa Effect. So Parkinson's patients often lean to one side. As a young super8 filmmaker in Italy, my first film was of that tilted tower.
Wednesday, August 24, 2016
One Year On 2
So it's been about a year since I first heard of MSA, when I had the appointment at Keck and Dr. Daniel Togasaki said he "suspected MSA." I had never heard of i, and so began the long course of learning and denial hat is now my daily routine. I was also fresh out of the hospital for C-DIF infestation, so freeing myslelf of that was big. I was checking in with Facebook at the lime, and learned that friend Shelly Coon's son had also contracted C-DIF in the hospital, andd she recommended the supplement Sachramyces as the best defense against C-DIF, where I had only been given probiotics. So I added the Sacharomyces,which I recenly learned is fungal, and I've kept the C-DIF at bay. I use Jarrow Sacharomyces with FOS, regularly available at Sprouts and Whole Foods.
My Mom jumped in and offered me caregiver support, in the form of several hours of paid caregiving support from agency Home Instead. They sent several young people over to interview for the position, and Christine and Caleb started working soon after. Christine proved herself professional and mature, she was with us 10 months later, loves pizza and ice cream, and has a good sense humor. We got lucky. Caleb was let go after he decided to drive north for Thanksgiving with his family rather than work. We'd enjoyed his company, he had some photographic skills, but Home Instead deemed availability primary. Shannon replaced Caleb and stayed for 8 months.
The second, or confirming, diagnosis was with Dr. Jerome Lisk, who I had met at the hospital and, at the time, thought I had Pure Autonomic Failure, another balance disorder. On examination, in October or November of 2015, he described me as a "posterchild for MSA".
My GP, Dr. Soliman, who saw me almost everyday at Arcadia Methodist Hospital, including buying the expensive antibiotic CIVICID, which beat back the C-DIF threatening my life, had me on Midodrine and Fludrocourt. But Dr. Lisk got me quickly on Northera, the latest drug for normalizing hypotension in MSA, ans Myrbetriq and Trospium for "neurogenic bladder".
My Mom jumped in and offered me caregiver support, in the form of several hours of paid caregiving support from agency Home Instead. They sent several young people over to interview for the position, and Christine and Caleb started working soon after. Christine proved herself professional and mature, she was with us 10 months later, loves pizza and ice cream, and has a good sense humor. We got lucky. Caleb was let go after he decided to drive north for Thanksgiving with his family rather than work. We'd enjoyed his company, he had some photographic skills, but Home Instead deemed availability primary. Shannon replaced Caleb and stayed for 8 months.
The second, or confirming, diagnosis was with Dr. Jerome Lisk, who I had met at the hospital and, at the time, thought I had Pure Autonomic Failure, another balance disorder. On examination, in October or November of 2015, he described me as a "posterchild for MSA".
My GP, Dr. Soliman, who saw me almost everyday at Arcadia Methodist Hospital, including buying the expensive antibiotic CIVICID, which beat back the C-DIF threatening my life, had me on Midodrine and Fludrocourt. But Dr. Lisk got me quickly on Northera, the latest drug for normalizing hypotension in MSA, ans Myrbetriq and Trospium for "neurogenic bladder".
Wednesday, August 17, 2016
One Year Out
It's been a year since I got out of the hospital on Evan's 8th birthday, July 18. We were at Lake Tahoe for his birthday this year. That was a goal, to return to Tahoe, which we missed last year because of my illness. We stayed in bnb Tahoma Meadows, where they have a wheelchair accessible cabin we reserved a few weeks ago.
Back from Tahoe, I contracted my 3rd urinary tract infection in the year since hospitalisation, fortunately not experienced during the trip, and I am on the 2nd antibiotic round (ciprofloxin) after the first medicine (cephalexin) was too strong. The first antibiotic wouldn't let me sleep; I couldn't tell if it was fighting me or the infection, so Dr. Soliman called in another prescription which is hopefully clearing the infection.It makes me too weak to do physical therapy. For 3 weeks I've had this infection.
6 weeks ago I was measured for a custom wheelchair. Sue Sargent even lent me money to try and speed up the process, but I seem to have done everything to derail our order. My PT instructor Shari was out-of-town for the appointment with the chair salesperson, who showed me 2 examples and measured me.A week later, Shari advised against the fixed-frame wheelchair, saying it would limit my leg use, so I revised my plan, looked at other models, and cancelled the TiLite chair that had been ordered. Little did I know that this change would delay the order for weeks.
Meanwhile, Georgetown University Hospital announced that it will hold a trial of the chemotherapy drug Nilotinib on MSA patients. I am trying to find a way to be included in that trial, since I was made aware of Nilotinib, and the positive results it has had on some Parkinsons patients in a GU trial.
Back from Tahoe, I contracted my 3rd urinary tract infection in the year since hospitalisation, fortunately not experienced during the trip, and I am on the 2nd antibiotic round (ciprofloxin) after the first medicine (cephalexin) was too strong. The first antibiotic wouldn't let me sleep; I couldn't tell if it was fighting me or the infection, so Dr. Soliman called in another prescription which is hopefully clearing the infection.It makes me too weak to do physical therapy. For 3 weeks I've had this infection.
6 weeks ago I was measured for a custom wheelchair. Sue Sargent even lent me money to try and speed up the process, but I seem to have done everything to derail our order. My PT instructor Shari was out-of-town for the appointment with the chair salesperson, who showed me 2 examples and measured me.A week later, Shari advised against the fixed-frame wheelchair, saying it would limit my leg use, so I revised my plan, looked at other models, and cancelled the TiLite chair that had been ordered. Little did I know that this change would delay the order for weeks.
Meanwhile, Georgetown University Hospital announced that it will hold a trial of the chemotherapy drug Nilotinib on MSA patients. I am trying to find a way to be included in that trial, since I was made aware of Nilotinib, and the positive results it has had on some Parkinsons patients in a GU trial.
Monday, May 16, 2016
Draft of Letter to Keck Center, USC
Hello.
Over the past several years I've experienced increasing balance problems including falling. What started with urological symptoms expanded to include neurological causes. A urologist encouraged me to investigate. When my condition is bad, speech and handwriting become erratic and sloppy. Several neurologists have examined me, and I've had MRIs, EEG and VER tests without conclusive results. One recent doctor mentioned cerebellar ataxia, but an expensive DNA test is called for and is delayed by my having a lengthy hospital stay this summer. I would love to see one of the experts at Keck and perhaps find out what's going on.
Owen O'Toole
Over the past several years I've experienced increasing balance problems including falling. What started with urological symptoms expanded to include neurological causes. A urologist encouraged me to investigate. When my condition is bad, speech and handwriting become erratic and sloppy. Several neurologists have examined me, and I've had MRIs, EEG and VER tests without conclusive results. One recent doctor mentioned cerebellar ataxia, but an expensive DNA test is called for and is delayed by my having a lengthy hospital stay this summer. I would love to see one of the experts at Keck and perhaps find out what's going on.
Owen O'Toole
Thursday, August 20, 2015
Or How I Spent My Summer Hospitalized
The following is a story of illness and hopeful recovery. Some of it could be disturbing to people with weak or impaired constitutions. In fact, the lesson of the story is partly that if you let your guard down and get too soft you can open yourself up to getting clobbered or even inhabited by a hostile organism. There are millions of bugs that see your body as a Slurpee or a warm, wet place to take a nap. The suggestion of that is enough to make some people sick. Some people are susceptible, even to suggestion. And illness can grow or cascade from something small into something larger and threatening. Heath can also improve in an energetic, cascading fashion. Planets are born.
Jupiter has long been my favorite planet. I realize that Saturn wins all contests of elegance and beauty, but Jupiter's size and great red spot captivated a child concerned with the majestic, who named his stuffed dog King.
Since developing the muscle weakness associated with ataxia, I have fallen numerous times, sometimes as slip-and-bang falls, but more often as balance disorder collapses in which I simply keep moving towards the floor. It is like my body suddenly weighs 5,000 pounds, I am on Jupiter.
I had been displaying MS-like symptoms for over a year: balance problems and falls, speech irregularities. I have incontinence that could be attributed to brain control function. So when I took a stumble in our back hallway, and did not respond, my wife Pamela had every reason to believe I was having a stroke and called 911. Suddenly there were 8 or 9 paramedics in our home and I was loaded into a box-van ambulance bound for the emergency room. After check-in, and a look at my ID and insurance, there's a 2-hour wait for admission at Arcadia Methodist Hospital. I had a minor cold at check-in, and was given an IV antibiotic to clean out my system. After 5 days in the hospital, I check out with about 10 prescriptions including more antibiotics, blood pressure raising medicine, and an elective mood elevator.
The next evening, before my son's school Open House, I took some Tylenol and some Musinex, besides the prescriptions. The antibiotics turned my cold into pneumonia. At the Open House, the combination of meds gave me visual hallucinations of lightning bolts and gold scarf patterns and I had to sit down. The next day, Evan had a choir performance at the local junior high school, and I dropped Pamela and Evan off, parked, and walked toward the auditorium steps. Light-headedness due to low blood pressure made me stop and rest several times, and someone helped me up the stairs and into a chair inside the entrance. Shortly thereafter, I white out and lean over onto the floor, banging and cutting my head on the parquet floor, blood oozing over my forehead. It was a scene, and one of the two school security agents said, " I'm going to call 911." I responded, "Please don't do that; I just got back from 5 days in the hospital and I'd much rather check in myself."
I don't remember a lot of the time leading up to my second hospitalisation, but Pamela says I had developed moderate diarrhea and we checked back into the hospital with a stomach disorder. I was put in a regular room until I tested positive for C-DIF, an infection of the colon which can be very difficult (thus DIF) to remove. The C-DIF colonizes the colon after antibiotics have left the intestines cleared of "friendly" microflora. At some point, I was moved into the Intensive Care or Acute Care Unit for closer observation. I was now being pumped with larger doses of antibiotics and other drugs and was sometimes delirious. One doctor or nurse told me my infection was so bad that I might lose my colon. I didn't seem to care so long as I was delivered from that state and that place. There were long periods of half-sleep where the ICU seemed like the set of Daktari, an animal hospital or bestiary where people and animals walked freely around a big screened-in porch or deck. It was a type of compound, and nighttime was a timeless dreamscape. The combination of drugs and bad dreams made me thrash around, so the nurses decided I was a bad patient and strapped me down. A young nurse stabbed at my arm, repeatedly trying to insert the IV, saying, "Why is it so hard?" I was put on a catheter/foley and an anal tube was inserted forcefully in my ass, a balloon inflated on the inside to keep it in place, both used for efficient elimination. The tube and the effort required to push during elimination, left me with a prolapsed colon, which means basically collapsed. A tube was also stuffed up my nose for easy administration of fluids.
Eventually I was released from Acute Care to a regular room, though I was still under isolation, meaning nurses and visitors had to suit up in plastic to enter my room. At last the antibiotics were gaining ground. Or the fever broke; or the C-DIF tested negative or in retreat. My white blood cell count may have lowered to a reasonable level. Evidently, my immune system is so compromised, so weak, that I have a hard time fighting off any hospital-born infection. On this tour of Arcadia hospital, I got pneumonia, C-DIF, and as a parting shot, scabies.
Two days into the C-DIF diagnosis, they told me I might have to have my colon removed. The infestation of the colon tissue by unfriendly bacteria is so complete that it can't be saved and I had an advanced case. I was put under heavy treatment and we'd just have to see how things went. To make a long story short, I got lucky and the treatment by oral and intraveneous antibiotics killed back the C-DIF and now I am going through a long recuperation, a kind of taking back of my body, which seems to happen in a two steps forward, one step back, fashion.
Before the appearance of C-DIF, I had a balance condition which I was trying to figure out. After some initial prostate issues (frequent night peeing) a good urologist noted, during a routine digital prostate exam, that my anal sphincter was not functioning correctly. I should see a neurologist. At the neurologist, I had an EMG and I asked him to order MRIs of my back and brain just in case there were any obstruction. Although inconclusive, the MRI doors opened into the world of brain disorders. A new GP doc (recommended by a friend) ordered further MRIs and introduced new neurologists and more tests (EEG and VER). This was all pre-hospital. A lady doctor named Purino was the first to suggest cerebellar ataxia, a largely unknown disorder requiring a genetic test to diagnose. A woman neurologist at UCLA had said 6 months before that I should have my lower back looked at, stop drinking, and I'd be alright. The differences in opinion were striking. (I am a moderate drinker, usually having 1 or 2 to drink socially, but I have been known to indulge.)
Being in the hospital is in many ways like being in prison. After my line-thrashing in the Acute Care ward, I was put on some sort of watch. My ataxia also made me a fall risk. They had a device on the bed, a flat mat on the mattress, which screamed an alarm if I got out of bed. I was trapped. I was also in "isolation", meaning everyone had to suit up in gown and gloves to come in and see me, because of the communicable C-DIF.
I asked my wife Pamela to bring a radio, tuned it to the 24-hour classical station and let it play in the background for 2 weeks straight. I didn't know I'd be there for 2 weeks; I was being swept along by forces beyond my control. I was largely victim to hospital-bound illnesses. But the whole thing added up to an intervention that I can accept that I desperately needed. My life had gotten dangerously out of hand, my health was seriously compromised by seemingly casual "lifestyle" changes-- sitting at the computer for hours instead of walking or running or going to the gym. At 50, I seemed to have a balance disorder which stopped my bike riding, and hiking soon followed, and running.
At the hospital, the radio was turned up just to the threshold that I could hear yet not really notice. The music became a subliminal tonic on my spirit. I had little idea what I was hearing at any time, but the whole acted like a soundtrack that I could grab onto. The Sony table radio was like a little liferaft. The music blended with the ambient sounds of the hospital, acting like a contrapuntal subwoofer, adding a secondary melody to what sound already existed.
After 2 weeks I had to shut off the radio. The countermelodies being revealed through the hospital sound filter were becoming oddly predictable and they had become the soundtrack to the various levels of Hades I had visited during those 2 weeks. Their repitition seemed to promise more of the same, like permanent hospital guest status.
While the RNs dispense the meds and insert the IV lines, the phlebotomists tour the hospital, collecting blood samples needed at the lab to track a patient's progress. Some of the phlebotomists are so good at their jobs that they appear to divine a vein's location, like a waterwitch, just glance at the area and find a good source. The nurses jokingly call them draculas. Some phlebotomists smile all the way through their jobs, even though it is a difficult duty. I dreamed about one blood-taker who looked a bit like Richard Burton, he had a wolf's eyes and fur all over his face.
Weeks into my stay I've been stuck so many times, the veins in my arms are hard to find and I'm getting reactions like infiltrations, where the vein blows out and IV fluid begins to fill the surrounding tissue like a ballooning tire. Overused veins can also get ropey and stay painful and unusable for weeks (which I think has a name but they wouldn't tell me).
After about 2 weeks of reading magazines and listening to low-volume radio, I succumb to cable television, first looking for BBC series on PBS, then awakening each morning to CBS and cable news, the Good Morning Americas and Today Shows. I became familiar with the current cycle of breaking news: the racist church shootings in South Carolina, the escaped convicts in Canton, NY (and my niece Emily just then choosing to transfer from Charlotte to St. Laurence, how strange). There are the great tennis matches of Wimbledon and endless golf. I saw 2 documentaries on country music stars John Denver and Glen Campbell. And finally I found Turner Classic Movies, where a few great pictures burn up the hours. I see The Birds and North By Northwest, Guess Whose Coming to Dimmer, Logan's Run, and Kurosawa's The Bad Sleep Well, a terrific reminder of the Japanese belief in ghosts.
The first day I watched television I was drawn to reality shows like American Pickers, in which antique dealers try to find hidden barnloads of collectibles and talk their owners into selling. i also enjoyed the food show called Diners, Drive-Ins and Dive Bars since I was determined to keep an appetite in spite of having an intestinal infection. It was great to watch people eating outrageous gourmet pub food for a few days. Then I had to switch it off. All the reality TV.
The hospital cafeteria food was starting to get redundant. There was almost always a beef and a chicken entree. It was reminiscent of oldtime airline food, although they did a pretty good job of offering choices, there were many options and you could make requests. I had 2 eggs and corn flakes with banana almost every morning, turkey and swiss cheese sandwiches for lunch, and some sort of turkey, chicken or fish for dinner. I had milk and yogurt and occasionally treated myself to ice cream.
After Intensive Care, I was transferred back to a regular room but classified as ISOLATION, which meant nurses and visitors had to suit up in plastic gowns and gloves before entering. The variation in the nurses' responses to this isolation was extraordinary, if understandable. Some nurses acted like Mother Teresa tending her poor, staying light-hearted ev en while changing bed pans and bedside commodes. Others gasped in disgust at having to clean up after me or change a diaper. Some avoided calls to my room or waited as long as they could to avoid the C-DIF room. There was everything in between: some nurses complained openly while performing their duties tirelessly and skillfully. But my endless thanks goes out to the handful of nurses who cared for me selflessly, like I was one of their own, saying things like, "This is what we signed up for," making relationships with me. Their presence enabled me to bear the constant discomfort for 2 months.
The hospital has a very efficient way of making beds and washing patients; they literally do it under you in the bed, rolling the patient to one side and folding up the linens to be replaced half-way, then rolling the patient back the other way and taking out the 2nd half, all the while loading the new linens onto the bed as they take out the dirty ones. Changing diapers was done the same way; roll to one side, away from the nurse, nurse cleans the close side, then roll and do it from the other side.
Somewhere in the whole of my long stay, I got scabies, or sand mites, which can take several weeks to develop, look like some common rash as first, and be very difficult to get rid of. My case didn't appear until very close to the end of my stay, so I don't know what caused it, probably unwashed hospital hands. Out of the hospital for a week, I still had it up the inside of my right arm and flank, saw the dermatologist and added an oral anti-bug medicine to the skin cream. Took 3 courses of all that over 3 weeks and the scabies still hangs on. There has been a lot of die-off, and I scratch toremove the almost paleontological dried-up pustule sites. The armpit areas, moist and warm, seem to remain active. Another dermatologist visit prescribes me with 3 more courses of medicine and some for the kid and wife, in case. My general practitioner says he's never seen such a long-standing infestation. He also tells me that my 2 latest C-DIF tests came back: one positive and the latest negative, contradictory results for sure, with the lab for the positive one showing some questionable organization and communication. Their result is in question. I have no C-DIF fever, but my stool is a little irregular.
So far I have taken 3 C-DIF stool tests since finishing the anti-biotic course which uses the super new antibiotic called DIFICID, made expressly to kill C-DIF bacteria, new to the market, difficult to get and very expensive. My doctor had to argue for the hospital to buy it for me. It costs about $1,000 per course (10 days) and is not produced in big batches, so I was lucky to get on that list. S long as at proves to work in the long run. Previously, I had taken 30 days of the antibiotic Vancomycin, orally and intravenously, which seemed to be working according to 2 test results, but 6 days out of the hospital, when I'm already enrolled in a costly all-day outpatient physical therapy program, I got the fever and the diarrhea again and it's back to the big house for one more round of it all. This was when my doctor ordered the new antibiotic made expressly to kill C-DIF.
C-DIF is becoming more and more prevalent as people rely rely more on antibiotics. You're given one antibiotic for pneumonia (VOCIN) and you could kill off the friendly bacteria or "flora" which live in the intestines as part of the digestive environment. There are also less friendly, aggressive bacteria which then have a chance to grow and dominate the environment of the colon. It can get so bad that the colon tissue itself is attacked. At the height of my infection, I was told I might have to have my colon removed. Fortunately, that hasn't happened, the Vancomycin kicked in and largely vanquished the C-DIF, although the C-DIF did return 6 days after my second release.
7 days since my 3rd release from the hospital, I'd had 2 C-DIF tests and we'll keep testing for the next month or two. I've heard that C-DIF can re-emerge several months after testing negative or pop up for a day and then submerge again. Very unpredictable. How do I strengthen myself against it? Take probiotics, but how much?
I'll be disabled for the immediate future. In fact, I've been disabled the past year or so, I just didn't see it. I had started falling and hurting myself. We got one statement from the hospital, which will probably be mostly paid by Blue Shield, for $88,000, and another "THIS IS NOT A BILL" from the insurance added another $205,000 to the grand total.
I came to LA with some success as a composer which I thought might carry on. But in LA I haven't been able to put down roots; the music world is extremely competitive and everybody has Protools and Apple loops. A lot of film and commercial work sounds the same. I tried some day jobs, we had a kid, I wanted to stay home with the kid. Then I got the idea to write a book which would be a huge success: a memoir about my Dad's career as a science writer. Inspired by Madmen, I saw a television pilot and endless episodes, but I couldn't get anyone to buy in, except for a few generous friends who helped me keep writing via Kickstarter. I sat at the computer for 5 years hunting and pecking. It's 6 years now and I'm not finished and my body's started breaking down. First some prostate/bladder issues and then balance problems. I cold no longer ride a bike, then running was taken off the list. I started to fall, then took some head-first falls. And the doctor visits began. Urologists, neurologists, MRIs, EEGs. I have gotten a lot of inconclusive opinions leading back to the cluster of brain disorders surrounding Multiple Sclerosis, and specifically one genetic disorder called Cerebellar Ataxia. It may require an expensive DNA test to confirm or at least several expert opinions. MS and related disorders seem to often be diagnosed i the negative, it's what's left when everything else is ruled out. MS and Parkinson's can take years to identify.
I have an amazing team of family and friends who helped me get through this Kafkaesque punishment. It was randomly doled out to me, or was I too weak in immunity to handle my hospital stay? My sister Ellen practically took over the running of our household, got forms filled out and bought bags of supplies on her 2 trips from Connecticut. My Mom made an extended trip and called the shots, pushing Dr. Soliman to do his best. Brother Tom, with his kids Jack and Violet, cousins Jennifer and Kathy, my mother-in-law Karen, and Pamela's brother Michael, all made their way to see me in hospital. Jeff Plansker and Andrew Bluestein brought a turntable one day and played Miles and Trane to lift my spirits. Gary Smith and Laura Plansker got me to laugh in the halls of Purgatory, and Victoria Edwards brought balloons and sunflowers to crack a smile. Lisa Verlo and Diana Shaw took time from their busy lives to try to remind me that life was going on outside.
To Pamela and Evan I give 1,000 thanks, for being there so many days and maintaining the illusion that everything still moved forward as I sat in my suspended animation chamber and $130,000 hospital bed. I never gave up; I was never in tremendous pain, just pretty chronic discomfort. I tried Delauded 3 times. Thanks to Dr. Soliman for doing everything he could to arrest my C-DIF.
Hospitals seem like safe places to visit. You might not want to lie down, unless you have to.
I got home on Saturday, July 18, my son Evan's 8th birthday. He sacrificed a birthday excursion to help me transition home. (He did go to Raging Waters the day before.)
One of my health goals was to attend the Rush concert in two weeks, August 1 at the LA Forum. My brother Peter offered to come out from DC and get us tickets. We had seen their 30th Anniversary show together et Red Rocks in Colorado, so it was normal for us to meet again for the 40th Anniversary tour. It was to be the last show of the tour. We grew up on Rush, the Underdog Band, not the first (Beatles), not the best (The Who, Yes), but the loudest. I got turned on to Rush by 2 Swedish brothers at a Summer camp on Cape Cod. Peter heard my albums and went the extra step of getting a drum kit and playing along to Rush over headphones.
Peter took another extraordinary step by acquiring us over-the-top 5th row seats to the Forum show. A few days later, it dawned on me that my being in a wheelchair would make visibility from the 5th row an issue. Peter contacted the Forum and, to make a long story short, had us relocated to a handicap-permitted section of the front row.
Meanwhile in San Diego, my other brother Tom has the less enviable job of getting bloodwork done in preparation and screening for the possibility of being my fecal transplant donor, if the antibiotics don't keep the C-DIF in their place. Fecal transplant is more common now, has a high rate of effectiveness when other methods have failed. I remember talking to Tom from the hospital, asking him if he'd be willing to do the fecal transplant, and basically breaking down, gushing in thanks; as I saw it, he was willing to save my life. I had been hospitalized for well over a month, numbed out by the experience, and it took this surreal request, of perhaps my oldest friend, to bring me back to my feelings. The pressure of 2 months in a hospital bed finally broke in his presence and I had a few good sobs. I went through a period after the vancomycin antibiotic where the fecal transplant seemed likely. I called my brother Tom, a vegetarian, and asked him to be the donor because I figured he has the healthiest poop.
One month after the last antibiotics course, it looks as if I won't have to resort to fecal transplant, although my brother did have the tests and is ready to donate. I have had 3 or 4 tests of stool samples and one did return positive, although Dr. Soliman says that the lab has proven itself unreliable, and the more recent test was negative. I have had no renewed fever or diarrhea. But that could change any day. I remain semi-incontinent and my colon is now prolapsed due to all the pushing when I was wracked with C-DIF. The prolapsed colon is where a short segment of the colon protrudes from the body. I must be pushed back in after each "use".
On my first return, almost 5 weeks ago, home operated partly like a field hospital. Pamela stepped into the nursing role with great bravery, and although it's too much to ask of anyone, especially the working mother of a young child, Pamela does sometimes explode, and often with reason, but then she almost always apologizes afterwards. That makes her a very special person. There is always forgiveness at our house. And the boy is having to deal with a lot of new emotions and confusions. Why the dad who was rather playful and involved for 7 years, started falling and then went away to the sterile, dead hospital, where he "almost, almost died" (my description) from C-DIF infection, and then got Scabies, where he can't then touch us for months. Evan is decidedly, if not wildly defiant, and partially addicted (if you can be) to video games like Minecraft and Animal Jam. One that came and went pretty fast was Singing Monsters, very funny soundtracks. And many of the games have ingenious ways of making millions of dollars through built in purchase devices. The games, or apps, are free, but then you want to buy gems for $19 and the credit card numbers go up in smoke. There are hiddden costs built into the new handheld, app-based economy that will ruin those of us not fast enough to set our parental controls or passwords.
Anyway, he's flying at a million miles an hour past Jupiter and Saturn and I'm scrambling to keep up. The body's still weighing a thousand pounds, though I try to work my legs and core everyday.
I got it better than some people.
Jupiter has long been my favorite planet. I realize that Saturn wins all contests of elegance and beauty, but Jupiter's size and great red spot captivated a child concerned with the majestic, who named his stuffed dog King.
Since developing the muscle weakness associated with ataxia, I have fallen numerous times, sometimes as slip-and-bang falls, but more often as balance disorder collapses in which I simply keep moving towards the floor. It is like my body suddenly weighs 5,000 pounds, I am on Jupiter.
I had been displaying MS-like symptoms for over a year: balance problems and falls, speech irregularities. I have incontinence that could be attributed to brain control function. So when I took a stumble in our back hallway, and did not respond, my wife Pamela had every reason to believe I was having a stroke and called 911. Suddenly there were 8 or 9 paramedics in our home and I was loaded into a box-van ambulance bound for the emergency room. After check-in, and a look at my ID and insurance, there's a 2-hour wait for admission at Arcadia Methodist Hospital. I had a minor cold at check-in, and was given an IV antibiotic to clean out my system. After 5 days in the hospital, I check out with about 10 prescriptions including more antibiotics, blood pressure raising medicine, and an elective mood elevator.
The next evening, before my son's school Open House, I took some Tylenol and some Musinex, besides the prescriptions. The antibiotics turned my cold into pneumonia. At the Open House, the combination of meds gave me visual hallucinations of lightning bolts and gold scarf patterns and I had to sit down. The next day, Evan had a choir performance at the local junior high school, and I dropped Pamela and Evan off, parked, and walked toward the auditorium steps. Light-headedness due to low blood pressure made me stop and rest several times, and someone helped me up the stairs and into a chair inside the entrance. Shortly thereafter, I white out and lean over onto the floor, banging and cutting my head on the parquet floor, blood oozing over my forehead. It was a scene, and one of the two school security agents said, " I'm going to call 911." I responded, "Please don't do that; I just got back from 5 days in the hospital and I'd much rather check in myself."
I don't remember a lot of the time leading up to my second hospitalisation, but Pamela says I had developed moderate diarrhea and we checked back into the hospital with a stomach disorder. I was put in a regular room until I tested positive for C-DIF, an infection of the colon which can be very difficult (thus DIF) to remove. The C-DIF colonizes the colon after antibiotics have left the intestines cleared of "friendly" microflora. At some point, I was moved into the Intensive Care or Acute Care Unit for closer observation. I was now being pumped with larger doses of antibiotics and other drugs and was sometimes delirious. One doctor or nurse told me my infection was so bad that I might lose my colon. I didn't seem to care so long as I was delivered from that state and that place. There were long periods of half-sleep where the ICU seemed like the set of Daktari, an animal hospital or bestiary where people and animals walked freely around a big screened-in porch or deck. It was a type of compound, and nighttime was a timeless dreamscape. The combination of drugs and bad dreams made me thrash around, so the nurses decided I was a bad patient and strapped me down. A young nurse stabbed at my arm, repeatedly trying to insert the IV, saying, "Why is it so hard?" I was put on a catheter/foley and an anal tube was inserted forcefully in my ass, a balloon inflated on the inside to keep it in place, both used for efficient elimination. The tube and the effort required to push during elimination, left me with a prolapsed colon, which means basically collapsed. A tube was also stuffed up my nose for easy administration of fluids.
Eventually I was released from Acute Care to a regular room, though I was still under isolation, meaning nurses and visitors had to suit up in plastic to enter my room. At last the antibiotics were gaining ground. Or the fever broke; or the C-DIF tested negative or in retreat. My white blood cell count may have lowered to a reasonable level. Evidently, my immune system is so compromised, so weak, that I have a hard time fighting off any hospital-born infection. On this tour of Arcadia hospital, I got pneumonia, C-DIF, and as a parting shot, scabies.
Two days into the C-DIF diagnosis, they told me I might have to have my colon removed. The infestation of the colon tissue by unfriendly bacteria is so complete that it can't be saved and I had an advanced case. I was put under heavy treatment and we'd just have to see how things went. To make a long story short, I got lucky and the treatment by oral and intraveneous antibiotics killed back the C-DIF and now I am going through a long recuperation, a kind of taking back of my body, which seems to happen in a two steps forward, one step back, fashion.
Before the appearance of C-DIF, I had a balance condition which I was trying to figure out. After some initial prostate issues (frequent night peeing) a good urologist noted, during a routine digital prostate exam, that my anal sphincter was not functioning correctly. I should see a neurologist. At the neurologist, I had an EMG and I asked him to order MRIs of my back and brain just in case there were any obstruction. Although inconclusive, the MRI doors opened into the world of brain disorders. A new GP doc (recommended by a friend) ordered further MRIs and introduced new neurologists and more tests (EEG and VER). This was all pre-hospital. A lady doctor named Purino was the first to suggest cerebellar ataxia, a largely unknown disorder requiring a genetic test to diagnose. A woman neurologist at UCLA had said 6 months before that I should have my lower back looked at, stop drinking, and I'd be alright. The differences in opinion were striking. (I am a moderate drinker, usually having 1 or 2 to drink socially, but I have been known to indulge.)
Being in the hospital is in many ways like being in prison. After my line-thrashing in the Acute Care ward, I was put on some sort of watch. My ataxia also made me a fall risk. They had a device on the bed, a flat mat on the mattress, which screamed an alarm if I got out of bed. I was trapped. I was also in "isolation", meaning everyone had to suit up in gown and gloves to come in and see me, because of the communicable C-DIF.
I asked my wife Pamela to bring a radio, tuned it to the 24-hour classical station and let it play in the background for 2 weeks straight. I didn't know I'd be there for 2 weeks; I was being swept along by forces beyond my control. I was largely victim to hospital-bound illnesses. But the whole thing added up to an intervention that I can accept that I desperately needed. My life had gotten dangerously out of hand, my health was seriously compromised by seemingly casual "lifestyle" changes-- sitting at the computer for hours instead of walking or running or going to the gym. At 50, I seemed to have a balance disorder which stopped my bike riding, and hiking soon followed, and running.
At the hospital, the radio was turned up just to the threshold that I could hear yet not really notice. The music became a subliminal tonic on my spirit. I had little idea what I was hearing at any time, but the whole acted like a soundtrack that I could grab onto. The Sony table radio was like a little liferaft. The music blended with the ambient sounds of the hospital, acting like a contrapuntal subwoofer, adding a secondary melody to what sound already existed.
After 2 weeks I had to shut off the radio. The countermelodies being revealed through the hospital sound filter were becoming oddly predictable and they had become the soundtrack to the various levels of Hades I had visited during those 2 weeks. Their repitition seemed to promise more of the same, like permanent hospital guest status.
While the RNs dispense the meds and insert the IV lines, the phlebotomists tour the hospital, collecting blood samples needed at the lab to track a patient's progress. Some of the phlebotomists are so good at their jobs that they appear to divine a vein's location, like a waterwitch, just glance at the area and find a good source. The nurses jokingly call them draculas. Some phlebotomists smile all the way through their jobs, even though it is a difficult duty. I dreamed about one blood-taker who looked a bit like Richard Burton, he had a wolf's eyes and fur all over his face.
Weeks into my stay I've been stuck so many times, the veins in my arms are hard to find and I'm getting reactions like infiltrations, where the vein blows out and IV fluid begins to fill the surrounding tissue like a ballooning tire. Overused veins can also get ropey and stay painful and unusable for weeks (which I think has a name but they wouldn't tell me).
After about 2 weeks of reading magazines and listening to low-volume radio, I succumb to cable television, first looking for BBC series on PBS, then awakening each morning to CBS and cable news, the Good Morning Americas and Today Shows. I became familiar with the current cycle of breaking news: the racist church shootings in South Carolina, the escaped convicts in Canton, NY (and my niece Emily just then choosing to transfer from Charlotte to St. Laurence, how strange). There are the great tennis matches of Wimbledon and endless golf. I saw 2 documentaries on country music stars John Denver and Glen Campbell. And finally I found Turner Classic Movies, where a few great pictures burn up the hours. I see The Birds and North By Northwest, Guess Whose Coming to Dimmer, Logan's Run, and Kurosawa's The Bad Sleep Well, a terrific reminder of the Japanese belief in ghosts.
The first day I watched television I was drawn to reality shows like American Pickers, in which antique dealers try to find hidden barnloads of collectibles and talk their owners into selling. i also enjoyed the food show called Diners, Drive-Ins and Dive Bars since I was determined to keep an appetite in spite of having an intestinal infection. It was great to watch people eating outrageous gourmet pub food for a few days. Then I had to switch it off. All the reality TV.
The hospital cafeteria food was starting to get redundant. There was almost always a beef and a chicken entree. It was reminiscent of oldtime airline food, although they did a pretty good job of offering choices, there were many options and you could make requests. I had 2 eggs and corn flakes with banana almost every morning, turkey and swiss cheese sandwiches for lunch, and some sort of turkey, chicken or fish for dinner. I had milk and yogurt and occasionally treated myself to ice cream.
After Intensive Care, I was transferred back to a regular room but classified as ISOLATION, which meant nurses and visitors had to suit up in plastic gowns and gloves before entering. The variation in the nurses' responses to this isolation was extraordinary, if understandable. Some nurses acted like Mother Teresa tending her poor, staying light-hearted ev en while changing bed pans and bedside commodes. Others gasped in disgust at having to clean up after me or change a diaper. Some avoided calls to my room or waited as long as they could to avoid the C-DIF room. There was everything in between: some nurses complained openly while performing their duties tirelessly and skillfully. But my endless thanks goes out to the handful of nurses who cared for me selflessly, like I was one of their own, saying things like, "This is what we signed up for," making relationships with me. Their presence enabled me to bear the constant discomfort for 2 months.
The hospital has a very efficient way of making beds and washing patients; they literally do it under you in the bed, rolling the patient to one side and folding up the linens to be replaced half-way, then rolling the patient back the other way and taking out the 2nd half, all the while loading the new linens onto the bed as they take out the dirty ones. Changing diapers was done the same way; roll to one side, away from the nurse, nurse cleans the close side, then roll and do it from the other side.
Somewhere in the whole of my long stay, I got scabies, or sand mites, which can take several weeks to develop, look like some common rash as first, and be very difficult to get rid of. My case didn't appear until very close to the end of my stay, so I don't know what caused it, probably unwashed hospital hands. Out of the hospital for a week, I still had it up the inside of my right arm and flank, saw the dermatologist and added an oral anti-bug medicine to the skin cream. Took 3 courses of all that over 3 weeks and the scabies still hangs on. There has been a lot of die-off, and I scratch toremove the almost paleontological dried-up pustule sites. The armpit areas, moist and warm, seem to remain active. Another dermatologist visit prescribes me with 3 more courses of medicine and some for the kid and wife, in case. My general practitioner says he's never seen such a long-standing infestation. He also tells me that my 2 latest C-DIF tests came back: one positive and the latest negative, contradictory results for sure, with the lab for the positive one showing some questionable organization and communication. Their result is in question. I have no C-DIF fever, but my stool is a little irregular.
So far I have taken 3 C-DIF stool tests since finishing the anti-biotic course which uses the super new antibiotic called DIFICID, made expressly to kill C-DIF bacteria, new to the market, difficult to get and very expensive. My doctor had to argue for the hospital to buy it for me. It costs about $1,000 per course (10 days) and is not produced in big batches, so I was lucky to get on that list. S long as at proves to work in the long run. Previously, I had taken 30 days of the antibiotic Vancomycin, orally and intravenously, which seemed to be working according to 2 test results, but 6 days out of the hospital, when I'm already enrolled in a costly all-day outpatient physical therapy program, I got the fever and the diarrhea again and it's back to the big house for one more round of it all. This was when my doctor ordered the new antibiotic made expressly to kill C-DIF.
C-DIF is becoming more and more prevalent as people rely rely more on antibiotics. You're given one antibiotic for pneumonia (VOCIN) and you could kill off the friendly bacteria or "flora" which live in the intestines as part of the digestive environment. There are also less friendly, aggressive bacteria which then have a chance to grow and dominate the environment of the colon. It can get so bad that the colon tissue itself is attacked. At the height of my infection, I was told I might have to have my colon removed. Fortunately, that hasn't happened, the Vancomycin kicked in and largely vanquished the C-DIF, although the C-DIF did return 6 days after my second release.
7 days since my 3rd release from the hospital, I'd had 2 C-DIF tests and we'll keep testing for the next month or two. I've heard that C-DIF can re-emerge several months after testing negative or pop up for a day and then submerge again. Very unpredictable. How do I strengthen myself against it? Take probiotics, but how much?
I'll be disabled for the immediate future. In fact, I've been disabled the past year or so, I just didn't see it. I had started falling and hurting myself. We got one statement from the hospital, which will probably be mostly paid by Blue Shield, for $88,000, and another "THIS IS NOT A BILL" from the insurance added another $205,000 to the grand total.
I came to LA with some success as a composer which I thought might carry on. But in LA I haven't been able to put down roots; the music world is extremely competitive and everybody has Protools and Apple loops. A lot of film and commercial work sounds the same. I tried some day jobs, we had a kid, I wanted to stay home with the kid. Then I got the idea to write a book which would be a huge success: a memoir about my Dad's career as a science writer. Inspired by Madmen, I saw a television pilot and endless episodes, but I couldn't get anyone to buy in, except for a few generous friends who helped me keep writing via Kickstarter. I sat at the computer for 5 years hunting and pecking. It's 6 years now and I'm not finished and my body's started breaking down. First some prostate/bladder issues and then balance problems. I cold no longer ride a bike, then running was taken off the list. I started to fall, then took some head-first falls. And the doctor visits began. Urologists, neurologists, MRIs, EEGs. I have gotten a lot of inconclusive opinions leading back to the cluster of brain disorders surrounding Multiple Sclerosis, and specifically one genetic disorder called Cerebellar Ataxia. It may require an expensive DNA test to confirm or at least several expert opinions. MS and related disorders seem to often be diagnosed i the negative, it's what's left when everything else is ruled out. MS and Parkinson's can take years to identify.
I have an amazing team of family and friends who helped me get through this Kafkaesque punishment. It was randomly doled out to me, or was I too weak in immunity to handle my hospital stay? My sister Ellen practically took over the running of our household, got forms filled out and bought bags of supplies on her 2 trips from Connecticut. My Mom made an extended trip and called the shots, pushing Dr. Soliman to do his best. Brother Tom, with his kids Jack and Violet, cousins Jennifer and Kathy, my mother-in-law Karen, and Pamela's brother Michael, all made their way to see me in hospital. Jeff Plansker and Andrew Bluestein brought a turntable one day and played Miles and Trane to lift my spirits. Gary Smith and Laura Plansker got me to laugh in the halls of Purgatory, and Victoria Edwards brought balloons and sunflowers to crack a smile. Lisa Verlo and Diana Shaw took time from their busy lives to try to remind me that life was going on outside.
To Pamela and Evan I give 1,000 thanks, for being there so many days and maintaining the illusion that everything still moved forward as I sat in my suspended animation chamber and $130,000 hospital bed. I never gave up; I was never in tremendous pain, just pretty chronic discomfort. I tried Delauded 3 times. Thanks to Dr. Soliman for doing everything he could to arrest my C-DIF.
Hospitals seem like safe places to visit. You might not want to lie down, unless you have to.
I got home on Saturday, July 18, my son Evan's 8th birthday. He sacrificed a birthday excursion to help me transition home. (He did go to Raging Waters the day before.)
One of my health goals was to attend the Rush concert in two weeks, August 1 at the LA Forum. My brother Peter offered to come out from DC and get us tickets. We had seen their 30th Anniversary show together et Red Rocks in Colorado, so it was normal for us to meet again for the 40th Anniversary tour. It was to be the last show of the tour. We grew up on Rush, the Underdog Band, not the first (Beatles), not the best (The Who, Yes), but the loudest. I got turned on to Rush by 2 Swedish brothers at a Summer camp on Cape Cod. Peter heard my albums and went the extra step of getting a drum kit and playing along to Rush over headphones.
Peter took another extraordinary step by acquiring us over-the-top 5th row seats to the Forum show. A few days later, it dawned on me that my being in a wheelchair would make visibility from the 5th row an issue. Peter contacted the Forum and, to make a long story short, had us relocated to a handicap-permitted section of the front row.
Meanwhile in San Diego, my other brother Tom has the less enviable job of getting bloodwork done in preparation and screening for the possibility of being my fecal transplant donor, if the antibiotics don't keep the C-DIF in their place. Fecal transplant is more common now, has a high rate of effectiveness when other methods have failed. I remember talking to Tom from the hospital, asking him if he'd be willing to do the fecal transplant, and basically breaking down, gushing in thanks; as I saw it, he was willing to save my life. I had been hospitalized for well over a month, numbed out by the experience, and it took this surreal request, of perhaps my oldest friend, to bring me back to my feelings. The pressure of 2 months in a hospital bed finally broke in his presence and I had a few good sobs. I went through a period after the vancomycin antibiotic where the fecal transplant seemed likely. I called my brother Tom, a vegetarian, and asked him to be the donor because I figured he has the healthiest poop.
One month after the last antibiotics course, it looks as if I won't have to resort to fecal transplant, although my brother did have the tests and is ready to donate. I have had 3 or 4 tests of stool samples and one did return positive, although Dr. Soliman says that the lab has proven itself unreliable, and the more recent test was negative. I have had no renewed fever or diarrhea. But that could change any day. I remain semi-incontinent and my colon is now prolapsed due to all the pushing when I was wracked with C-DIF. The prolapsed colon is where a short segment of the colon protrudes from the body. I must be pushed back in after each "use".
On my first return, almost 5 weeks ago, home operated partly like a field hospital. Pamela stepped into the nursing role with great bravery, and although it's too much to ask of anyone, especially the working mother of a young child, Pamela does sometimes explode, and often with reason, but then she almost always apologizes afterwards. That makes her a very special person. There is always forgiveness at our house. And the boy is having to deal with a lot of new emotions and confusions. Why the dad who was rather playful and involved for 7 years, started falling and then went away to the sterile, dead hospital, where he "almost, almost died" (my description) from C-DIF infection, and then got Scabies, where he can't then touch us for months. Evan is decidedly, if not wildly defiant, and partially addicted (if you can be) to video games like Minecraft and Animal Jam. One that came and went pretty fast was Singing Monsters, very funny soundtracks. And many of the games have ingenious ways of making millions of dollars through built in purchase devices. The games, or apps, are free, but then you want to buy gems for $19 and the credit card numbers go up in smoke. There are hiddden costs built into the new handheld, app-based economy that will ruin those of us not fast enough to set our parental controls or passwords.
Anyway, he's flying at a million miles an hour past Jupiter and Saturn and I'm scrambling to keep up. The body's still weighing a thousand pounds, though I try to work my legs and core everyday.
I got it better than some people.
Subscribe to:
Posts (Atom)