Two Hundred and Twenty-Seven.

227?

The number of days from listing to transplant. Now one of the most significant figures in my life.

Some other relevant figures:

  • 0.90 – My all-time low Forced Vital Capacity (FVC – lung capacity, in layman’s terms), in liters, recorded 16th February, 2010.
    • 17% – Percentage of “healthy” CF patient’s FVC.
  • 0.90 – The accompanying Forced Expiratory Volume over the first second of expiration (FEV1 – volume of air exhaled in the first second of exhalation), recorded on the same date.
    • 19% – Percentage of “healthy” CF patient’s FEV1.
  • 1.67 – My FVC on 16th March, the last recorded prior to transplant, and showing the improvement needed to survive anesthesia.
    • 31% – Percentage of “healthy” CF patient’s FVC.
  • 1.13 – Accompanying FEV1 from 16th March.
    • 24% – Percentage of “healthy” CF patient’s FEV1.
  • 3.76 – My FVC on 10th June 2010, two months after transplant.
    • 70% – Percentage of “healthy” CF patient’s FVC.
  • 3.58 – The accompanying FEV1.
    • 77% – Percentage of “healthy” CF patient’s FEV1.
  • 2.09 – Post-transplant FVC improvement from immediately before, representing a 125% increase.
  • 2.45 – Post-transplant FEV1 improvement from immediately before, representing a 216% increase.
    • (Note that FEV1 is the measurement most frequently used to gauge a patient’s respiratory condition in CF exacerbations.)
  • 33 – The amount of weight I’ve gained since January, in pounds, including both the weight gained in preparation for transplant and the weight gained post-transplant.
  • 15 – The amount of weight I’m currently permitted to lift, per hand, in pounds, to prevent injury to my sternum (which was broken for surgery).
  • 1 – The number of laps I’ve run around the block in Medfield since we got home. And it’s going to stay that way, because I can’t run anymore (at least for the time being).
  • 46 – The length, in inches, of the longboard I’m using to circumvent the running issue.
  • 38 – The number of days since my last post. Sorry!

The Drought Ends

Firstly yes, I am home, and have been for a while. There’s plenty to write about, and trying to keep track of it all exactly is an exercise in futility, so I’ll stick to the most important stuff (in my mind) and hope for the best. Dates, times, specifics, they’re all pretty much a blur so I’ll detail what I can and leave out the rest. Right, let’s see if I remember how to do this. Here goes:

Let’s start with the numbers. Just by reading them, you can probably tell I’m feeling quite a bit better than I was prior to transplant. That’s been done to death in other posts, but in summary let me say that the nagging aches and pains of surgery have passed and I’m feeling much more “normal” (by a normal person’s standards) than I have since… probably sometime in 2008. For the first time in ages I’m able to consider plans for the future on a scale of years, rather than days or weeks, and visiting Children’s in Boston is no longer a guaranteed check-in. I’ve gained weight (visibly so), mostly in my legs which had become unnervingly bony prior to transplant, and I can once again walk, jump, and run (when permitted) normally, albeit with more difficulty than I’m used to or would like.

TL;DR: My health overall, and PFT scores in particular, are improving steadily, and I hope to break 100% in FEV1 and FVC within six months of transplant (so, by the first of October).

Nucleus

No, this has nothing to do with Shapiro’s class. At least, not directly. Those I’ve talked to about my intended cochlear implant surgery may remember these, the Nucleus 5 Cochlear Implant system. Given my preference, these will be the implants I receive. The full list of features are on the website, but I’ve mentioned to many people that they’re Bluetooth-enabled and can plug directly into a headphone jack. This means I can answer my cell phone or listen to music in my head. First-person shooter video games will never be the same.

The status of the implants can best be described as “on hold”. I’ve got the OK from insurance, my doctors (both in Cleveland and in Boston), and the surgeon, but the one holdup is making sure I have any and all vaccinations required before surgery. Since I just had a fairly major surgery I should be good to go, but the docs aren’t taking any chances (I am immunosuppressed at the moment). I’ll post more news when there is more news. Until then, things are looking good for the implants but, as in all medicine, it’s a process.

TL;DR: Cochlear implants are on hold until my vaccination record is checked. After that, I’m cleared to get them.

But What About the Food?

Fear not, for I am still eating (see the weight gain notes, above). However, I haven’t watched the Food Network (or, in fact, really any TV apart from occasional baseball games) since I’ve been home, and so my well of ideas has run fairly dry. I have promised several people that I would cook for them (or with them), and I will make good on those promises at the earliest opportunity. Unfortunately, the opportunity has yet to present itself. I am getting back into the swing of things, however, and there’s a pot of pasta sauce simmering away in the kitchen right now. Unfortunately, I don’t have any new recipe pages to put up (though I’ll get to work on those), so I’ll leave you with some words of culinary wisdom instead. Apologies to Food Network because I’m going to steal some of their lines.

  1. Cooking is about confidence. Stressing out over following recipes to the letter* will ruin both your nerves and the dish. (*Never do this unless you’re baking, by the way. If you are baking, then always do this.)
  2. Using too much of an ingredient can often be remedied by adding more of a different ingredient – oftentimes one not originally called for in the recipe. Learn which flavors complement each other and how to balance them. It can’t be taught by a book or a cooking show. It must be practiced.
  3. Salt does not make things taste salty. It makes things taste good. (Thank you Food Network.)
  4. “Umami”, that elusive flavor that is somehow in both beef and wine, is in actuality the precise flavor of monosodium glutamate. That’s right: MSG. Now you know why everyone loves Chinese food.
    • Incidentally, “umami” is just the Japanese word (or equivalent) for “yummy”. Descriptive, no?. Also incidentally, MSG has never been proven to cause any of the things it’s been blamed for, despite extensive testing.
  5. Don’t cut carbs. They give you the energy it takes to get you through the day. If you must diet, cutting out fats is far more productive (more than twice so, in fact). With 4 calories per gram of carbs (or protein) and 9 calories per gram of fat, you can cut out less than half as much and get the same result (or better, for reasons best left to someone other than the late Dr. Atkins to explain). Ideally, don’t “cut out” anything – just eat right.
  6. Pasta is not a vehicle for sauce. Pasta dishes are about the pasta itself, the sauce is just a complement to that. If you can’t taste your pasta, remember to salt the water (after it’s boiling, before you put in the noodles). If that’s not enough, lay off the sauce (literally speaking). To truly appreciate the flavor of pasta, make your own and mix something flavorful into the dough. You won’t regret it.
  7. Forget the whole “red wine with red meat, white wine with white meat” nonsense. Drink what you like, and eat what you like. While some people prefer the specific combination of flavors provided by a specific bottle of wine with specific foods (read the label on many wine bottles to see what I mean), the only rule to follow is to enjoy it.
  8. On that last bit: Food is supposed to be enjoyable. If you’re trudging through yet another crappy, soggy, bagged mess, try to liven things up. If you’re eating at a restaurant (or a fast-food joint, even), try something different from “the usual”. Or combine things you haven’t before. If you’re brown bagging, change things up. Bring a lunch box* or instead of a bag. Bring something other than a sandwich. And if you’re packing a microwave dinner, change it up. Subsisting on nuke-able food is bad enough without having to eat the same thing five times a week. (*Yes, I do own one of these. Why do you ask?)
  9. Eating is largely submissive (thank you Tony Bourdain for this bit of wisdom). When you eat, you are largely at the mercy of the chef and his or her talents. Think about that the next time you order a double Whopper with fries and a Coke, or wait halfheartedly for the microwave to finish heating some rubbery disaster.
  10. Anyone can cook (stolen from Ratatouille). This doesn’t mean that “everyone in the world can cook”, though that is true to some extent (physical and mental disabilities exempted). What it means is that anyone could turn out to be able to cook. I look at it as though everyone has the potential to turn into a great cook, or at least a passable one (which is already leagues above the average nowadays). All it takes is the desire to do so, and a willingness to fail, which leads me to:
  11. You will fail. Often. To varying degrees. You might cook something totally inedible, or it might just be a tad off of what you were aiming for. Look at cooking the way Bob Ross looked at painting. If you’re perpetually dissatisfied, your next attempt will be better. Why? Because you learned something from your last attempt. Learn enough, and you’ll fail less and less, until even your “failures” impress anyone who eats them.
    • To be honest, more than one of the dishes I’ve put up on this site have been what I would call failures (though none have been totally inedible yet).
  12. Food is what you make of it. In more ways than one. Appreciating what you have (e.g. beef broth three times a day when coming out of surgery) and appreciating the amount of effort that someone has put into it (e.g. Ossobucco  at Michaelangelo’s in Little Italy) will ensure that you get the most out of every meal.

TL;DR: Food is good. I haven’t been cooking much, but am getting back into it. I own a Star Wars lunch box. More recipes and updates to come.

Many Thanks

There are lots of people to thank, whether they sent cards, food, money, Red Sox tickets, games, gadgets, or just love. Far too many to list here, especially because I’d feel terrible if I missed someone. You all know who you are, and I thank you all very much for your thoughts, prayers, and well-wishes. Thankfully, things are going smoothly and barring any illness should continue to do so.

TL;DR: Are you kidding? That was only four sentences! Did you read any of the post? Go back to square one and start again!

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5 Comments (+add yours?)

  1. Linda Haskins
    Jan 17, 2011 @ 15:39:23

    I am late to this blog but I have been praying for you for many months. After Bev Beckam’s article in the Globe, I put the pic of you and your sibs as my screensaver so that anyone who sees it could inquire and pray also.
    God is so faithful.
    Blessings and Go Sox!! Pitchers and catchers on Feb. 14th–whohoo!
    Grace & Peace,
    Linda H.

    Reply

  2. Soligan Family
    Jul 13, 2010 @ 23:00:27

    Hello Mark & family,

    YEAH!!! YOU ARE HOME! You are a ROCK STAR.!If you are interested in learning new recipes with a master Mr. Soligan is an AMAZING cook. He uses simple……fool proof recipes for delicious meals, appetizers & desserts. You are welcome to come over any weekend in the fall for a lesson and dinner. Bring your parents too. We would love to see you all. Your dad usually stops by the shop before the CF walk. Things were very crazy at our house during that time. I am sorry we didn’t flollow up on our own. We would still love to make a donation. We have read many of your blogs. You should definitely be a writer. I truly believe your families strong support, your faith & your sense of humor have guided you through this journey. We are so proud of you as I am sure Dan & Lisa are. Good luck with the implants.

    We are looking forward to seeing you out & about,
    The Soligan family

    Reply

  3. Kati Raff
    Jul 07, 2010 @ 22:34:33

    So glad to read that you are home and improving daily. I was sent an email to pray for you just as you were heading for the transplant. I do not know the woman who sent me the email a but I have been praying for you and your family ever since. I finally decided to google you to see if I could track your progress. I was thrilled to find your website. I’ll keep praying – you keep getting better.
    Best wishes,
    Kati

    Reply

  4. Nancy Behenna
    Jun 12, 2010 @ 12:57:57

    Mark….so happy to hear how awesome you are doing and glad to see you writing again. I don’t know if your Aunt Kathy told you, but my sister-in-law’s brother (Mark) also had a double lung transplant at Children’s in Boston about 7 years ago. He is doing awesome post CF. My sister-in-law was amazed to hear how quick your recovery was, how soon you were sitting up, how quickly you were released, etc. I am actually going to foward your blog on to her as I know she will love your cooking tips.. Hope you don’t mind!!! Keep up the good work, love life and hope to see you some day at a family function. Tell your Mom I said hello.

    Reply

  5. Grandpa
    Jun 11, 2010 @ 23:03:47

    Mark I love your bulletin. Thanks for getting it into print. Anytime you cook up some thing new and need someone for a taste test, “call me”. In fact, you can call me anytime for dinner.

    Reply

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