EDIT: Working on the new appearance. Something a little less, well, dark, is in order.

There is an update incoming. It’ll be a long one (or maybe a medium two), with pictures and recipes (holy crap three of them!) for your perusal. I’m also renaming the blog, since transplant is over. Next time you hear from me, it’ll be on:

The Adventures Of Mark’s New Lungs

Two Hundred and Twenty-Seven.

227? More

Chapter Twenty-Nine: Oh, Deer!

Or: Lions and Tigers and Be(zo)ars, Oh My!

I had an appointment on Thursday. Since then, I’ve been unable to eat much of anything due to a lovely gastric bezoar (see alternate chapter title), possibly caused by gastroparesis. For the medically disinclined, a bezoar is an obstruction of the gastrointestinal system, usually found in the stomach, made up of indigestible… stuff.

In my case, it was undigested food that had built up because of a delightful little side effect of surgery and/or a similarly pleasant side effect of my subsequent pain medications. That being the stomach failing to recognize the presence of food (which would ordinarily trigger the digestive process) and so emptying very, very slowly.

The solution? A Monday esophagogastroduodenoscopy (also known as “you win at Scrabble” – more on that later), which essentially entails lightly sedating the patient (me, in this case), placing an endoscope down said patient’s esophagus and into the stomach, using water (or in some cases, Coca-Cola… y0u can’t make this stuff up) to wash and/or break up the undigested mass, which then allows it to exit the stomach or to be removed via a larger tube, inserted under heavier sedation.

It sounds about as fun as it is, to be honest. Hardly a wonderful time, but thanks to the sedatives, not unbearable. The amount of material they removed was actually much less than expected, as some of the bezoar had cleared itself. Once the mass was out of the way, an injection of botox (yes,that botox) was given, again via endoscope, to help prevent further blockages until the nerves in the stomach recover. (Don’t ask me how a toxic product of the bacteria that causes botulism helps with this. I decided against med school, remember?)

Before we left for the clinic, Dad and I played another game of Scrabble with the theme of “medicine” (double points for theme words) since we’re both painfully familiar with the subject. I won this game, 478-376. After the game, Dad pointed out the window – a family of deer were running across the lawn behind the hotel parking lot (and worryingly close to the train tracks that are responsible for waking Dad up at all hours of the night). He grabbed the camera and I took a few pictures (hence the chapter title) and noted that spring seems to have finally arrived (knock on wood).

While at the Clinic, I was able to use the iPad (thanks again, dance moms!) to get onto the guest WiFi network and download some books to read with the Free Books app, and also to try out UrbanSpoon (possibly my new favorite application) and Evernote. The iPad will come in particularly handy during trips to the Clinic, as I can record my daily vital signs on my Evernote account and access them during my appointments, so that I can show them to the doctors instead of relying on my memory, as I had to do during the last two visits. It’s also excellent for killing time, of course, which is nice because I am (by necessity) the last appointment of the day – a fact which can translate into a lot of waiting time.

Dinner was had at the Boneyard again, and I again ordered their fish and chips (they really were that good). Unfortunately, the side effects of one of the medicines I’m now taking for “motility”, as well as the predictable side effect of having botulism forcibly injected into one’s stomach, have resulted in near-constant nausea and stomachaches, and occasionally worse. Needless to say, this has put a damper on my appetite slightly. While I would ordinarily just eat bland food for a few days, a shipment of Omaha Steaks is scheduled to arrive today and Dad will be grilling a couple of them tonight.

And a late-breaking news flash (to me, anyway): I’m scheduled for another bronchoscopy on Thursday. I thought the next one was scheduled three weeks after the last, so this is a bit of an unpleasant surprise. Hopefully everything goes as well as last time.

Chapter Twenty-Eight: Apples and Potatoes

My first appointment since discharge was today. Dad and I drove to the Clinic at 6:30 for blood labs, then returned to the suite since my x-ray and pulmonary function tests weren’t scheduled until 1:30. I did nebs and napped, as I wasn’t allowed to eat anything after 7:00 and was only permitted to take my anti-rejection meds this morning. More

Chapter Twenty-Seven: A Little Italian

Sorry for the delay in posting. Mom is keeping up with work from the hotel, which necessitates the use of the sole Internet connection for most of the day on weekdays. Since the Ethernet jack is in Mom and Dad’s room, this also means I can’t use it after they’ve gone to bed, limiting me to the time after Mom finishes work and before she or Dad go to sleep. While this may sound like plenty of time, this is also the only time we can have dinner or do anything else together. I’ve started writing posts offline ahead of time (this being the first) so that I can simply upload them later.

Monday we opted to have lunch in Cleveland’s Little Italy, at Trattoria Roman Gardens. We ordered the fried calamari as an appetizer, and I was pleasantly surprised to find that it was the best calamari I’d ever tasted. One of the difficulties with calamari is that if it is cooked too little or too much, even by a matter of moments, it becomes rubbery. This calamari was perfectly soft, lightly breaded and accompanied by a mild marinara sauce. I stopped eating my ravioli halfway through in order to go back and finish the calamari, which is saying something because I have a terrible weakness for ravioli. After finishing lunch, we went across the street to a pastry shop we’d visited on one of our earlier trips, only to find that it is closed on Mondays.

Arriving home, Mom went back to work while Dad and I played a game of Scrabble. We took Uncle Paul’s suggestion of using a theme, but instead of limiting ourselves to theme words, we opted to double the point value of words that fit the theme. Dad refused to use “food” as our theme, for which I can’t blame him, and instead we decided that our theme would be “sports”. Despite the broad range of acceptable sports words, only a few were used over the course of the game, which I won with a score of 478 to Dad’s 336. The completed board can be seen below.

After the Scrabble game, Dad and I went to buy groceries to make dinner, opting to stick with simple cold cut sandwiches after our big lunch. Shaved turkey, corned beef, cheese, some fresh Italian bread, and tuna fish rounded out the options. I also picked up a can of Ovaltine, which I found by accident while we were looking for Irish tea (a fruitless search). Mimi and Papa came up to the suite in the evening, but were still too full from lunch to eat even the sandwiches. I was glad that we’d scrapped the earlier idea of making hot spinach dip and an apple tart.

After dinner, I sorted most of my medications for the week. While the planner now contains more medicines than I had been on at home, and I am taking more nebulized and IV treatments than I was previously, the difficulty of maintaining my regimen has actually decreased as my energy levels have risen since transplant.

Yesterday began routinely, though I ended up taking a Percocet at Dad’s suggestion, as my abdomen continued its tendency to cramp up and cause pain. He and Mom went with Mimi and Papa to visit one of Mom’s cousins, an hour’s drive away. I opted to stay at the hotel since I hadn’t showered, was still hooked up to my morning IV meds, and was still waiting for the Percocet to take effect. The thought of spending an hour in a hot car with four other people (the Escape seats five, uncomfortably) would have been enough to deter me, but I also saw an opportunity to complete the work I began yesterday on the Bulletin, changing the look and flow of the site and adding a few pages. While there is still work to be done (which probably won’t happen until the weekend), I finished enough of it to be presentable. As you can see, there have been some major changes that will hopefully make the site more readable and easier to navigate. Please leave feedback (comments, questions, suggestions) on the new layout so I know which parts are successful and which are not.

After spending a few hours overhauling the Bulletin, and after Mom and Dad returned from lunch, I took a nap in order to catch up on some of the sleep that I’ve been missing due to my med schedule. When I awoke, Mimi and Papa were sitting with Mom and Dad in the living/dining room, and I joined them to watch a bit of TV. I cooked the leftover spinach salad from Sunday night and ate it for dinner, and before she and Papa left Mimi made sure to give me hugs from my cousins and goddaughter.

Today’s plan was to have lunch at Carrabba’s, as Mimi and Papa will be going home this afternoon. Unfortunately, Carrabba’s doesn’t open until 4 o’clock, so we walked down the street a bit more and had lunch at The Boneyard, a grill and pub covered in skeleton (and booze) décor. Their fish and chips (which both Papa and I had) were very good, and their wings might merit a return trip sometime next week. I’m adding their “Ridiculously Hot” (NC-18) wings to my food to-do list, because their menu warns that they should not be eaten by anyone with respiratory or heart conditions. Delightful. In addition, wings are 39¢ each on Wednesdays from 6pm until closing, so I can make a meal out of them without breaking the bank.

I’ll resume cooking either tonight or tomorrow morning, depending on when we are able to go grocery shopping and what we are able to find. In the meantime, I plan to post the recipes that have appeared in previous updates and in the future to post recipes at the same time as the updates that feature them. Recipes that I have borrowed from other sources will be posted in their entirety, with a credit and link to the original source. Original recipes will not have such credits but may have notes regarding the inspiration for them.

I learned yesterday that May is (apparently) national runners’ month, which conveniently ties in to my goals for the coming weeks. While it is slightly ahead of my original plan, I now hope to be able to run (or at least jog) by the end of May. I don’t expect to be able to run very fast, or any great distance (my body is still adjusting to the new lungs, after all), but I’d like to push the envelope just a little and be able to celebrate the month with a run. I’m sure the doctors will be wary of this, but I will run the idea by them (pardon the pun) during my appointment Thursday. I believe I have a bronchoscopy scheduled for that day, a prospect that excites me not at all. I’ve never had one before, and from all accounts it is an unpleasant experience to say the least. I hope I’m unconscious for the procedure, as it is pretty terrifying to have foreign objects in one’s lungs. This will also give them an opportunity to remove the stitches from the last two tube sites without causing me undue pain. Here’s hoping.


For those of you who are scratching your heads, wondering if you’ve stumbled onto the wrong page: you haven’t. I’m overhauling the Bulletin to make it a bit easier to read, navigate, and update. Since Mom needs to use the computer for most of the day during the week, I’m limited to updating in the late evening. Once the changes have been implemented, it should be a much simpler process for me to update (meaning I can update more regularly). There will also be a few new additions which I hope will interest some of you. Check back in a day or two. Once the new features are up and running, the posts will resume.

EDIT: The renovation is complete, so updates can resume. Check back tonight for the latest post, after Mom is done with work for the day.

Chapter Twenty-Six: Family Style

No church for me. Dad pointed out that while I am required to wear a procedure mask any time I am out in public (particularly indoors or in crowds), it is best to avoid situations where I am exposed to large groups of people whenever possible. Church, of course, would require me to stand for an extended period of time, indoors, surrounded by a large group of people. He suggested that I should stay at the hotel while he, Mom, Mimi and Papa went to church. I took the opportunity to make some more tacos with the leftover meat and fixin’s from last night, to watch a bit of Law and Order, and to do my nebulized meds. More

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