The Sober Widow

Chapter 12

Hello there! You thought I was taking a hiatus, didn’t you? Well, I’m sorry about that. I actually got a part-time job that has me as busy as can be. But I’m happy about it and it means I’m back in the theatre, which I love, love, love. But enough about that.

I don’t remember if I’ve mentioned it, but I was on a lot of food and drink restrictions for most of my hospital stay. I wasn’t very hungry anyway, but when I was, I wanted to eat the good stuff. Aaaaannnd that is not going to happen when you can’t eat much fat or sodium. Also, a lot of times I was on a fluid restriction as well so that the already accumulated fluid wouldn’t get any worse (that, my friends, was a pipe dream).

Posted here is a photo of a sample hospital menu. I’m kicking myself that I didn’t take a photo of an actual menu at MGH. I had to fill them out every day for the next day’s meals. The choices were pretty good, and the food was not terrible, although I quickly learned which meals to avoid. (Tip – don’t eat the baked chicken. You can barely cut it with a serrated knife and it’s dry as dirt.) Also – the dishes that are fairly bland taste WAY better with some sour cream in them! 😊

Generally, the soups were terrific and the breakfast omelets weren’t bad. Now mind you, I am not a picky eater, and there are not many foods I won’t eat or don’t like, so I’m pretty easy to please. But please don’t give me scrambled eggs from a box or fish that’s tough and also hard to cut. Like I said, I learned what not to order, and what was good.

With a full menu, which was much more extensive than what you see here, you had all kinds of choices, like bagels and English muffins for breakfast that were good when toasted, and you could also get peanut butter and cream cheese (and jelly) to complement them. I would have loved a runny egg over the toast or bagel, but that was not offered. Hard boiled or scrambled, take your choice. Often for breakfast if they had an omelet that sounded good, I would get that and with some cheese and vegetables, the eggs weren’t bad at all. I always got yogurt because even if I couldn’t eat it at breakfast, I would have it later for a snack. And you could also get fresh fruit, so I usually always had an apple, orange or banana tucked away for later.

Think about this – I’m so unhappy and uncomfortable and just feeling so crappy that when I could eat, that’s all I had to look forward to. I was so pathetically grateful whenever anyone came to see me, but it didn’t happen all that often because let’s face it, MGH is not easy to get to and you have to pay to park. So I completely got it, but if I’m going to have to watch Netflix or try to read ALL DAY and also have to be poked and prodded all the time, having something delicious to eat offset it to a small degree.

Now take away my food. Then my water or any other fluid.

The MGH menu was a full page for each meal. Lots of choices. Juices, coffee, tea, sodas, milk, chocolate milk, hot chocolate, etc. Oatmeal, cereal, bagels, muffins, bacon, breakfast sausage, veggie sausage, it was sometimes tough to pick what you wanted for breakfast the next day, or lunch, or dinner. And they would have a daily lunch and dinner special, soup du jour, plus 3 or 4 other soups, salads, and five or so different types of dressing.

You get where I’m going with this. A daily menu for three different meals, paper full of all the choices for each of them. Then the doctors decided that they needed to put me on a low-fat diet because the liver can’t fully process the fat in my diet. Then my sodium level is too high for pretty much the same reason. So now about half the menus are completely removed, where I can’t even make the choice. So, let’s say I wanted a bagel, and it was a choice yesterday. Now it’s gone. I would get a menu in the morning for each meal and only about half the choices were there.

THEN they decided I need to restrict my fluid intake. Yogurt? Can’t have it. Tea, coffee, juice? Pick one. My total fluid intake per day was 1500 ml. That’s 50 fluid ounces. For the entire day. Make a choice – if you want cereal, with milk, that’s 8 ounces you can’t have of water. Since I was very anemic the last couple of months before surgery, I wanted to chew ice all the time (it’s a thing). But ice melts and they counted it as fluid. Bottom line – I was thirsty a LOT.

After all the restrictions were in place, I remember laughing when the orderly handed me a menu. There were about 11 choices on the entire page. I kid you not. Then the transplant team came in to see me and told me that I’m not eating enough. So I handed them the menu and said “here you go! What would you eat?” It got so bad that one of the physicians’ assistants (PA) said that she would see what she could do about having more choices added. Apparently, the nutrition team just tells the cafeteria about the restriction with some loose guidance and the cafeteria makes their best effort to meet it. Often, they overcompensated. Then, the reins were loosened a bit, but not much.

And I was responsible for keeping track of how much liquid I was taking in. This was all in an effort to slow the fluid retention and get as much of it out as possible. In my experience with at least 100 different diets over the years, drinking more water gets rid of the fluid you’re retaining. That’s not the case here due to the special circumstances regarding how the fluid was accumulating. You’d be amazed how quickly you can drink 1500 milliliters of fluid. I mostly succeeded in keeping additional fluid retention at bay, not really eliminating it. That’s what dialysis was for, or the paracentesis treatments.

The end result – somehow, I became even more miserable than I already was! The first time that the fluid and fat restrictions were lifted, I ordered ice cream immediately.

Now let’s briefly talk about waste in the hospital. I didn’t do that much research, only talked to the nurses and aides, because I wondered where all the waste went. My understanding is that MGH has an incinerator, and it doesn’t seem they do much, if any, recycling. That bothered me a lot. And they probably use the incinerator for their problem patients (ha ha) so keep that in mind if you’re ever admitted there!

I was in the wing for the patients who were awaiting kidney and liver transplants (probably other organs too, but those were the ones I knew about). We are highly susceptible to infection (and I still am) so perhaps the waste was more prevalent here, I don’t know for sure. But one nurse did tell me that she was appalled as well with all of it. For example, if one of my visitors brought me food, it couldn’t leave my room. I only found this out after I ate a little of the food, and then asked a nurse if they could refrigerate the leftovers. That’s when they told me no. I was so bummed out that I couldn’t have it again the next day. But once I knew, we developed a system where my visitor would bring anything needing refrigeration first to the nurses’ station. They would then allow the visitor to remove a portion for me to eat right then and keep the rest. That way, they could give me another portion the next day, and so on.

One time, one of the PAs brought me a small pizza because we had been talking about it. As soon as she brought it in, I’m like “no! get that out of here!” but it was too late. So we each ate as much as we could before throwing the rest away. And damn, it was good pizza.

It gets worse. When I got COVID in the hospital over the summer, they had to quarantine me, which I think I mentioned. The waste was terrible because NOTHING could leave my room. You know those pink plastic pitchers of water they give you? When it ran out, I couldn’t even get it refilled. They had to throw out the entire pitcher and get me a new one. So here’s me, asking the tough questions “well what about the sheets and pillowcases? And the johnny I’m wearing? What about the IV poles? Why is my bed allowed to leave with me when I’m being taken down for testing or dialysis?” etc. etc. etc. Somehow those were an exception? I couldn’t get a straight answer because the nurses didn’t really know.

There was so much waste that someone (in a haz mat suit, I swear to God) would come in three or four times a day to empty what was already a giant wastebasket. OK, you get the point. I had to tell the world (or the tiny population of people who read this blog) because I find it so reprehensible.

(Climbs down from her soapbox) This was a longer post than I intended but I had fun writing it and remembering the terrible food while I ate a delicious cookie! I do try still to limit my intake of fat because even though I have a new liver, why make it work harder than it has to? Also, spoiler alert – it’s not that good for you anyway.

Bye for now. Thanks for staying with me!