Friday, June 10, 2011

Mr Whipple to the rescue

It's been a long road, but we're hopeful that The Unfortunately Loyal Boyfriend has entered the last stage of full recovery from his pancreatitis. This experience was completely unexpected, pervasively uncertain and frequently changing throughout, with the situation and our knowledge of it altering fairly substantially every couple of days, and sometimes every day or every few hours. It continues to change daily even now. But it's evolving in a different way, towards full recovery.

He was discharged from hospital towards the end of May for the third and, we hoped then, final time, after a stay of only a few days. He was in quite good shape, judged by our radically revised pancreatitis-filtered version of 'good'. He still had the drain, a thin plastic tube surgically attached inside his abdomen that was taking out 100-150 ml of pancreatic fluid a day. As he put it, it took out about a Coke can's worth every three days, just to remind him that he was not allowed to drink carbonated beverages or caffeine. He was able to drink water, eat small amounts of a few foods, walk short distances and sleep relatively uninterrupted for five or six hours at night. He'd lost a large amount of weight and was quite weak and lacking in energy. He could only eat an extremely low fat diet as digesting fats put the most pressure on the digestive system and pancreas. He could have low fat milk and yogurt as he'd been given in the hospital, and we gradually introduced other low fat foods (less than 3 grammes of fat per 100 grammes) but avoided using any oil or butter in cooking, sticking to steaming and boiling food and grilling without oil. At the same time he couldn't eat foods in combination, but only very plain foods cooked separately, such as boiled potatoes, steamed carrots, broccoli, cauliflower, asparagus and the like, but over the next couple of weeks he was able to eat sauces and combined food – major progress.

Things went quite well and the community nurse returned to change the dressing in the first week, and it seemed then that it would need attention only weekly. Unfortunately a day later the dressing had to be changed again, necessitating a quick trip back to the hospital on yet another bank holiday weekend – sure what's a holiday without a hospital visit to hang out with our mates the nurses? As the drain seemed to be get blocked quite often, from then on the dressing around it had to be changed every day. The community nurse came to do this about twice a week and I did the rest, becoming proud of my novice nursing skills, filling a large medicine chest with extensive supplies, and gaining great familiarity with the intricacies of sterile dressing kits, sterile versus non-sterile gloves, saline, syringes, gauze and the versatilities of different types of clear plastic adhesives.

Things seemed to be progressing well and he was feeling better and better, able to eat more types and a larger amount of food, and overall we were hopeful that after a month or two of this he'd have the drain removed and be starting to fully recover. There was a second unexpected visit to the hospital when a consultant doctor checked up on him, kindly fitting him in as part of his rounds and for free, even though he was no longer a patient there. When we arrived, a nurse said, "why don't you wait in your old room?" He'd clearly made an impression as it was three weeks since he'd been on that ward. Somehow having a room in a hospital that is referred to by the staff as 'your' room doesn't seem like a good thing, it's not quite having a suite at the Chelsea Hotel.

After two weeks at home with a mere two hospital visits, it was high time for another procedure, namely an endoscopic ultrasound. This was done to give a better picture of what was happening in the pancreas and it could reveal microlithiasis, tiny pieces of gallstone 'grit' that had not yet formed into gallstones. This was the last remaining possibility in terms of providing a cause of the pancreatitis. While in theory the grit might have been revealed, with a relatively simply operation to remove it and cure the problem, I realised the night before the procedure that I'd no expectation at all that this might happen, I simply assumed the mystery would remain.

When we met the consultant two days later, he told us that indeed they'd found no grit, that the pseudocysts of fluid were smaller but still present, and that they had found a small amount of necrosis – dead tissue in the pancreas. This was not a good thing, and he told us he was now revising the description of the pancreatitis to 'severe' – also not a good thing. He told us that The Unfortunately Loyal Boyfriend would need major and quite complicated surgery to remove the dead tissue, remove the fluid, and make a new connection between the stomach and the pancreas. He also planned to remove the gallbladder, as he put it, "surely while I'm there it'll only take ten minutes" (or did he say five?). We were slightly in shock in this meeting, as surgery had not been a possibility prior to this. Apparently they never operate earlier than six weeks into pancreatitis, but this was now needed and it was also the optimal time to do it. The operation had a less than 1% fatality rate – small, but difficult to handle having to think about fatality rates at all. A list of complications "as long as your arm" that he wasn't going to tell us about. And it was a long recovery, "lucky" to get out of hospital two weeks afterwards. This was an excellent surgeon, one of the few in the country who deals with these kind of complex pancreatitis cases. If we hadn't been assigned to him in the first place, we'd have likely ended up with him anyway. He answered our questions, treated us with respect and we trusted him. Hey, he cycles every day between the four hospitals he works in, how could we not trust him? Asking if there were other treatment possibilities, the surgeon concluded by saying "you have no other options." Most importantly, this operation would take care of all the current problems and might prevent recurrence of the pancreatitis in the future, though that was unclear. After the operation, it was likely he would actually be okay.

The Unfortunately Loyal Boyfriend continued to feel better as we waited for the operation, and we even made it out for dinner on one wonderful day. A couple of weeks and he was admitted to hospital the evening before the surgery. The surgeon came around with his consent form. I asked for more information on whether there were any major complications that were likely, as opposed to just possible. He said "The only complication you have to worry about is death." Then he said he didn't mean to be flippant. And strangely I wasn't that worried. It could happen. But it was a slim chance and we had accepted that chance.

Thus two weeks ago at this time I was sitting in the lobby of St. Vincent's University Hospital, waiting for my partner to wake up after a major operation. I'd been there with him as he went from the ward, and had had to leave him, gowned and on a gurney, at the entrance to the operating theatre. A doctor, unprompted, promised, "We won't forget to call you." Three and a half hours later I asked the front desk of the hospital to call them; the receptionist held the phone telling me words that resembled "he's conscious, the surgery went fine." There were probably some other things said after that but I didn't take them in. He was awake and he was okay.

Other things happened after the operation. They called from the recovery room, told me it had gone very well, that he'd been out of surgery for over an hour, and that I could see him soon. He was moved to the High Dependency Unit, a room with three beds arranged directly opposite the nurses' desk, where patients are monitored closely, essentially a step below the Intensive Care Unit. He was there for four days, but only because he was on an epidural for pain relief, which has to be observed in such a unit. He was hooked up to a lot of machines and tubes, and the setting probably would have been a bit overwhelming if he hadn't recently spent over five weeks in hospital. At it was, this new situation didn't phase me at all, or him. Later we found out the surgery lasted an hour or so, much shorter than the three or four hours that it could have taken if it hadn't gone so well. The drain was gone, along with his gallbladder.

After a few days The Unfortunately Loyal Boyfriend was moved to a room in an ordinary ward.I learned that his strangely-titled Whipple operation was not an acronym as we'd assumed but named, fantastically, after Mr Whipple! Who'd pioneered an adapted form of it in the 1930s. And now it would have the result that he'd be able to eat ice-cream once again, among other rather more significant effects. In total he'd now lost about three stone (42 lbs or 19 kg) in weight. A week after the surgery, the last canula was removed from his arm, the first time he'd been tubeless in two months – no longer part cyborg. The surgeon crossed his fingers, made a nought and said that the chance of the pancreatitis recurring was as close to zero as he could say. And in keeping with the ever-changing nature of this whole process, the situation shifted again, but this time, for a change, for the better, when one morning the doctor suddenly said he was well enough to be discharged. It was three months to the day since the start of the pancreatitis. And now, surgery over, out of hospital, in the last phase of recovery, I feel that he's really going to be okay.



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