Rob Schoenberg

For several days, my husband Rob had been feeling a little off. Actually, we all had: there was some kind of flu-ey virus going around. On Sunday, 20 September, 2009, he was feeling bad enough that he went to bed, which was unusual for him; dosing himself with painkillers for the headache, but mostly trying just to sleep it out. The next day, he had a little bit of redness under his belly (he was very overweight, and it had settled around his lower belly). No pain or itching, just redness. He felt so bad from the flu-like virus, though, that he didn't really pay much attention to the redness. He didn't feel any pain or itching, just, a couple of days later, a little uncomfortable pressure. He has an extremely high pain tolerance: but, contrary to popular belief, a high pain tolerance is more likely to kill you than a low one is ever to embarrass you. He was extremely worried about a major presentation he was running at work on the Thursday, really major: he and his team had worked intensely for several months on this project, and people were flying in from around the country and from overseas to attend. When he got sick, his main priority was being well enough to get through this presentation competently. He didn't make it. On Wednesday, the 23rd , Rob went in to work to spend the day going through final "rehearsals" with the team – but they sent him home at lunchtime. He arrived home wheezing and gray, and barely able to walk. He still, stubbornly, didn't want to go to the doctor at that point, he only wanted cold, cold water to drink, and to sit for a while. He then tried to go to bed, but found that he couldn't relax enough to sleep. When he went to the bathroom and had trouble, I asked him what was wrong, and he showed me his belly and "naughty bits" – his scrotum was angry red, and swollen to the size of a cantaloupe. That was enough! I called a taxi and got him up to the Canberra Hospital. At the emergency room door, I left him and ran to the desk to register him: normally they make people sign in and wait, but as soon as they saw Rob and heard his wheezing, they opened the big door and rolled out a wheelchair for him. I did all the pre-admissions stuff while they took him back to a cubicle. By the time I got back to the treatment cubicles, the entire emergency room had gone very, very quiet (and it was full!), listening to the horrible drama. I had no trouble figuring out where he was. There were 4 or 5 doctors and as many nurses all crowded around him, and more arriving. They had him on oxygen immediately, and hooked up heart electrodes as best they could, but he was sweating heavily. When they finally got enough on to get a good reading, the news was horrifying: his heart was extremely fast, and extremely erratic – the rate varied from about 140 to over 200 beats. It was thought he had a straight cardiac problem – not an attack, but just as bad – until they removed his clothes and saw the redness and swelling in his skin. Cultures were taken immediately, and he was moved to a different section of the ER that had more room. Test after test was taken: his blood pressure was too high, his blood sugars were too high, they couldn't get his heart stabilized, and he was acting and talking pretty loopy. They finally anaesthetized him and gave him two sets of paddle-shocks. The second one "took," sort of. Well enough for the time being. At the peak of all this, there were 7 doctors and at least 9 nurses on him, full time. This went on for a couple of hours. Finally, things settled down, it was only a matter of waiting for tests to come back, waiting for specialists to come in, waiting for a bed to be made ready for him. He wanted me to go home and get some rest, and the nurses recommended I do that, too. So I did. This later became the second of many cases of me thinking, "If I'd known then what I know now, I would have done things differently!" (The first case was calling a taxi instead of the paramedics to get Rob to hospital.) I came in early the next day to visit him. He'd been entered into the ICU. In the very early morning, however, Rob's heart had started going crazy again, and the only thing they could do to settle it, finally, was put him into a coma. And there he stayed for two weeks. The kids and I still had no idea what was wrong with him. That was Thursday. Just before midnight, Thursday night, a plastic surgeon from the hospital's team called me at home, asking permission to perform surgery! She explained that the redness and swelling were from a major, virulent, and fast-moving infection, and they couldn't afford to wait. She thought the surgery would last for about 2, maybe 3 hours – it lasted for over 6. They removed a massive amount of skin from his lower belly, back, and sides, and from his whole crotch. He had a huge black vac-dressing over the open wound. When I saw him later that day (which was now Friday), he was attached to a heart-breaking (and truly cringe-worthy!) number of tubes and machines, not breathing on his own; his heart was being assisted, he was on heavy-duty antibiotics, and there were needles and beeping machines and monitors everywhere. On Saturday, the surgeons went in to finish the debridement – they hadn't got quite all of the infected skin out, so this surgery finished the job. And then all they could do was wait. My kids and I still didn't know what was really going on. A few days later, the lead plastic surgeon, Dr. Patel, and his team sat me down and explained. Rob has diabetes, and hadn't known it. He had had it for some time, completely undiagnosed and untreated. The result of this, this lack of treatment, was that his immune system was over-worked – for years! – until it was too badly compromised: and that's when the necrotizing fasciitis found him, and decided his run-down ol' body would make a great party house. The form of NF that Rob contracted is called Fournier's gangrene. The result was that his heart went crazy trying to keep his blood pressure/ immune system in some kind of order, but the racing, erratic heart meant he couldn't ever get a deep breath, so his lungs were filling up with fluid. When he was finally admitted to surgery (which was as soon as the culture results got to them), the surgeons figure that he was 6-7 hours away from death. Dr. Patel, it turns out, takes a special interest in treating necrotizing fasciitis. He believes that this disease is on the rise and will get worse. He also believes that the major reason so many people die of the infection is because doctors around the world are not yet familiar with just how bad this infection is, and so they proceed cautiously – way too cautiously. Other doctors and hospitals have an 80% "kill rate" for NF. Our doctor justly prides himself on having a 100% cure rate. Rob and I were very, very lucky! Well. Rob spent a month in the ICU, in a coma at first, with over a week of "coming out of the coma" once those meds were withdrawn. His kidneys went into acute failure, and he was on and off dialysis many times – I lost count. He was given various versions of milk-shake mush through a feeding tube, which he kept trying to spit out when he was still semi-conscious. He kept trying to talk, and was extremely frustrated when he couldn't (he's an extraordinarily articulate man in healthy life). He bit the finger of one of the nurses when she tried to clean his teeth for him. He kept insisting (with hand and mouth motions) that he would be going home at the end of the week. It takes a lo-o-ong time for induced-coma medications to wear off. :-D And at least two medical students asked for Rob's formal permission to let them read his case notes as part of their studies (which includes discussing the details somewhat publicly). Because the vac-dressings cover only open wounds, he had to go to surgery every time they needed to be changed, which was every 2-3 days. Over the course of his hospitalization, Rob had 14 surgeries, all but 3 of them mainly to change the dressings. He spent a total of 10 weeks in the hospital, 4 of them in the ICU, the rest on a medical ward, waiting out the surgeries and building up his muscles again. His entire musculature had atrophied completely from being in the coma. Thank the gods for television with remote controls, too bad the hospital doesn't get cable. He'd lost a third of his entry-day body weight in the first month; he'd lost over half by the time he came home. He lost so much weight that the plastic surgeons just gave him a tummy-tuck and two thigh-lifts to cover most of the wound: because the surgeons could do this, Rob got away with only about five skin grafts. Kids, don't try this at home! He would have been hospitalized for longer if the physical-rehabilitation ward hadn't had a full-up waiting list. I got to bring him home two weeks before Christmas (yay!), though he missed Halloween and Thanksgiving, and our daughter's birthday, at home. He has a walker, a pair of canes, a big rehab chair, a shower-chair, lots of smaller appliances, and we are in separate bedrooms just so he can keep all the equipment he needs nearby. Three-and-a-half months since he went into the hospital, he can now walk a few steps without support, and walk quite a bit further with his walker. He still has a lot of pain, increasing recently because his nerves deeper inside are regenerating. The canes are for stairs. We've made a few trips to the mall, to his office to say hello, and of course to doctors' appointments – many doctors' appointments! He's lost his sense of balance, so he can't bend over safely, or pick things up off the floor, or get dishes out of the dishwasher; and if he fell down, he couldn't get himself back up without people and equipment to assist. He hopes to do work from home, but may be able to go back to his office job in another 6-8 weeks. He's very stubborn, and hates to be helpless, and these usually annoying characteristics are very usefully driving his recuperation. Yesterday was his 58th birthday. I am just humbly grateful he's still with me.