Sorry for being out of contact so long, my friends. Here’s the story, which is personal and that you’re quite welcome to skip.
I’d been hospitalized since passing out in my desk chair in late July 2016. My condition had been declining for a while since the disastrous incident in 2014, and by late July I was no longer able to go upstairs to sleep. After several days in my desk chair and trapped downstairs, I passed out. I was not found for days.
By the time I was found, my own excrescences had caused several wounds in my backside, with the largest central one a foot in diameter and nearly two inches deep. Also, draining down my left pants leg, the fluids had eaten 80% of the skin off of my left leg below the knee.
The skin patches on my leg were mostly still attached but on edge. Picture a freshly skinned rabbit whose raw flesh had been adorned with three pounds of crisply fried bacon.
My kidneys had completely shut down, and many other systems were failing. I was just a short time from death. My son called the ambulance right away. I could not be awakened (thankfully, in a sense). When the ambulance arrived, I had to be cut out of my chair and clothes; flesh and clothes and chair had fused.
What was the Disastrous Incident in 2014?
The original problem had been food poisoning in April 2014 from dinner at a nice restaurant. It killed my wife in two days and crippled me in two months. The dinner contained Campylobacter jejuni, which gave us both gastric distress and which gave me CIDP and thus crippled me.
My Odd Genetics
I am genetically immune to all pain killers (and narcotics and marijuana and alcohol and even aspirin) so the recovery has been … interesting. Local anesthetics work, but I burn through them quickly and they don’t have much application here. Recovery from the many surgeries and other things has involved a lot of teeth-gritting.
What is CIDP?
The disease I have is called CIDP (formally Chronic Inflammatory Demyelinating Polyradiculoneuropathy). It was caused by the bacterium of the food poisoning. It’s rare, but that doesn’t matter as I have it. My genetic immunity is much more rare, but I have that too.
The external membrane of the Campylobacter jejuni bacterium mimics those in the outer membrane of human peripheral nerves. So as your body produces antibodies to go off to war against the bacterium, they can be fooled into attacking those myelin sheaths aound your peripheral nerves. Your nerves die or are wounded from friendly fire. It generally works from the longest nerves to the shortest, or “toes go insensitive first.”
CIDP, and its milder cousin Gullain Barré Syndrome or GBS, affect sensing nerves (pain, touch, pressure, temperature) as well as motor nerves that drive the muscles. They work on both sides about equally, hence the “poly” in the name.
One of the problems with the motor nerves going is that they normally run all the time, firing off small signals that keep your muscles in shape.This is called “muscle tone.” When those signals stop, as in CIDP or GBS, the muscles waste away very fast.
GBS, also triggered by the same bacterium and a few others, starts out like CIDP. Your toes go numb, tingling or stinging, and weak or unable to move. But by then your feet are affected, then your lower legs, upper legs, then hips (affecting bowel and bladder control).
Short nerves can be affected early on, though it seems as though that shouldn’t be true. The nerves often involved include the ones controlling your vocal cords (the 10th cranial nerve or “Vegas nerve”), the nerves connected to the inner ear, and the nerves controlling swallowing (a combination of several cranial nerves) as well as some going to the face. For me, the inner ears went early on, followed by the voice damage.
When it gets to your diaphragm, it stops your breathing. If you’re in the hospital when that happens, then they cut your throat open and insert a breathing tube. If you’re not, you simply die.
You generally stop this process with a big IV infusion of a bunch of antibodies from 10,000 or more people. This infusion is called IVIg, for Intravenous Immunoglobulin. This stops GBS, but it should be just the beginning of aggressive treatments for CIDP.
IVIg is expensive; the dose I’m getting now comes in four bottles totaling 2,800 ml (about 3 quarts) and lists for about $100,000. I get this every two weeks, but I’ve just learned that in the transfer between hospitals (I was moved on New Year’s Eve) a different sort of ball got dropped. The new hospital is not set up to actually do this infusion, and they did not arrange for someone else to do it.
Now that I’m home, I’m back to home delivery. This involves two full 9-hour days hooked up to IV bottles and a pump, but this gets stuffed into a bag and hung on my chair or neck.
What Happened in the Hospitals?
In the first hospital, all sorts of fluids were pumped into me, but it was still days before I came to. And even then, I had days of very rational, very detailed hallucinations. But I got past these quickly enough, and am amazed at the details in my memories of faulty environments extending over several days. I must record them.
Typing is difficult, as is Internet access. I am “cheating” now, sitting up somewhat. The major wound is healing well — “miraculous” “wonderful” “best we’ve ever seen” — but they don’t want me on it. I’ve met many people I’ve never seen, as they were brought in to see my amazing backside. Perhaps that’s my best side after all.
I was able to use the cellphone early on (after regaining consciousness and eventually lucidity in early August). But my phone died a few days later of the same incident that nearly got me. It had gotten soaked.
More good news: My healing powers are still strong. Kidneys and liver seem to have completely recovered (not to mention my mind), and my legs are almost entirely healed.
A major Wound-Vacuum system was installed in August on the largest wounds, with a piece of wrapped foam replacing about 2 pounds of dead flesh in the central wound.
I was moved to a second hospital, an “acute care” facility, after four weeks. The patients are in general not able to use electronics. I was there for four months and change.
In this second hospital, after a brief stay in the intensive care unit, I was in room 2A for a month when my roommate moved out. They offered to move me over, and I accepted. I was thus in room 2B for two minutes, enjoying its garden view. Then I was moved to 5B after being told “it has a window.” It was two feet narrower, creating problems for caregivers.
I asked for the larger 2B again and was told emphatically that they’re all the same size. They refused, despite 2B becoming available again.
Then my roommate moved out of 5A. I eyeballed it and requested that larger space. Four caregivers gathered around me to insist that the size was equal. I got one of them to step off the spaces. She did the whole space (both rooms) together at first: 17.5 steps. Then my room: 7.5 steps. “See?” she said, “they’re the same.”
After I coached them through the math, they moved me over. And then put in a poor demented all-night all-day shouter with a booming voice next to me, perhaps as punishment.
This was followed by days of no sleep, including everyone for rooms around. Then I got sick with a bacterial infection that panicked the doctors into removing all IVs and cranking a bunch of antibiotics into me. I asked one doctor about visitors: “The infection threatens your organs, not your family.”
When they pulled out my IVs and PICC line and ran blood cultures, they determined that the PICC line had caused the infection. And they moved me back to 2B after all. I could still hear my old roommate, but the distance was enough. I healed rapidly, except for some heart damage.
Two of my roommates passed away next to me, and I suspect that others taken to ICU made it no further.
For me, there were a few more events along the way, such as one more hospital-caused infection. Both affected my heart, causing some atrial fibrillation or vibrating of the heart (reducing the pumping). They wanted to do surgery on the heart to fix this, but it resolved on its own. There were nine other (mostly small) surgeries, difficult for one who is completely immune to pain medication. Happily, they did three at once for the gut surgeries, installing a (likely temporary) colostomy bag, and fistula for the other side of the large intestine, and a jejunum-tube for feeding assistance.
The J-tube was necessary. At one point, my throat was scarred and I could not eat nor drink for more than a month. I had a nasal/gastric tube (miserable) and they fed everything down the nose tube. During that time, I watched a bunch of cooking videos.
I am back in the kitchen, and the “perfect omelet” technique works. Other things will wait until finances improve and I am able to unpack cooking gear.
What’s Happening Now?
I’ve been learning to walk again. That’s a process when nerve-damaged legs haven’t touched the floor in five months. On the first day of physical training in November, I was so proud: I was able to stand with a walker four times, the last time for most of a minute. I had to be lifted into position and lifted back to the bed, but it was a beginning.They moved me on New Year’s Eve to a rehabilitation hospital.
I walked 450 feet in the rehab hospital with no stops before being released, but looked pathetic doing it and was still carrying maybe 20% of the weight on my walker and arms. The last couple of days have been focused on stretching out my knee joints and others in my legs. At the moment, it feels as if I had mighty compression stockings squeezing the legs, and that they have muscles made of wood. But I consider it progress.
I used to have legs like tree trunks. Five years ago I could push a leg extension machine in the gym at the 350-pound maximum setting just using one leg. Now I’d be defeated by 20 pounds, and could not even do that a few months ago. But as my legs are almost extended, I can almost support my weight (170 pounds or 70kg).
We just realized at the last hospital that “almost extended” is where I am getting stuck. So we worked on leg stretches in a big way. If I can get my legs straight, I can support my weight and can take my weight off the walker. I can then use the walker for stabilization when moving, but could do other things when standing like cooking.
At home, we eventually came up with a set of excercises that help. I can do half in bed, over about 45 minutes. But, as I’m suddenly living alone and cannot risk a fall, the other exercises are difficult to do at all.
As I write this on the evening of April 1st, my legs have a very good burn and buzz going. Not painful, but interesting. It feels as though I were wearing very tight thigh-high compression socks. I am much better at standing, but now out of practice on the walker.
I’ve had 85 caregivers in the third hospital in two weeks, and a couple of hundred more in the previous two. I keep track.
I am coming out of this stronger than one or two years ago. Part of this is because they bumped up the dose of the IVIg by a factor of five (but oh, the cost!), and instead of allowing me to slowly decline, it is actually restoring some of the nerve damage from the food poisoning.
All the damage from this recent crash has healed or is healing well, even the kidneys. The leg is completely healed, and five of the seven backside wounds are as well. The big one is still mighty sore and limits transportation, but it’s down from about a foot by 1.8” deep to about 1″ and almost no depth, and will be healed in the next month or so.
A Moving Experience
Shortly after coming home, family circumstances made a move necessary. I wound up being moved to a tiny house out in the California desert. You drive out of LA until you get to the sticks, and then you’re only an hour or so from my place.
One drawback: No food delivery reaches this scattered community of about 300 people. A friend brings perishable groceries from time to time, and the rest can come from Amazon Pantry.
In Paint Your Wagon, one singer complains of being in the Western wilderness. I’ll paraphrase him:
“… And now I’m lost, so gul-durned lost, that Domino’s can’t find me.”
Here’s the original:
Perhaps I was born under a wandrin’ star, after all. But I’ve got to get better fast to follow that star. Working on it. I am optimistic and looking forward to the future.