• Our Mission

    Our Mission

    Our mission at PCD Smiles is to bring smiles to hospitalized primary ciliary dyskinesia, no mater their age; through the gift of a cheer package. Currently serving only The United States and Canada.
  • Request Cheer Package

    Request Cheer Package

    Know of a hospitalized primary ciliary dyskinesia patient? Please visit our “Request a Cheer Package” link and fill out our secured form to submit them for a cheer package today!
  • Donations

    Donations

    Our cheer package program runs on donations. To see how you can help PCD Smiles, visit our donations section today!
  • The PCD Artist Project is a collaborative effort by artist to raise awareness for PCD & support the PCD Smiles cheer package program. Visit our exhibits today!

Dear Smile E.

I’m having a hard time maintaining my weight. Everyone is always after me to eat more; but how can I eat more when the food doesn’t have taste to it, because I can’t smell? I think my biggest issue is that I can’t stomach eating because so much of it tastes what I imagine sawdust tasting like. What are your suggestions on making food more tasteful and maintaining weight?

Signed,

Not Hungry in Texas

 

Dear Not Hungry in Texas,

I can totally relate to what you are going through. Maintaining weight when you’re a respiratory patient is difficult enough when we are well, let alone when we are fighting an infection. I saw a dietitian a few years back, and she told me that on average pulmonary patients need to consume about twice the amount of calories that a healthy person does just to maintain their weight. Let me explain. The average healthy person needs to consume around 2,000 calories a day to maintain optimal health. This gives their body enough energy to preform daily functions like breathing, heartbeat, moving, digesting, and other basic bodily functions. When a person has a pulmonary condition like PCD, their body works extra hard to breathe, fight infections, and so one; this requires extra energy. She suggested that I strive for about 3,800 calories a day on average due to my height, my weight, my age, and a few other factors. She also suggested getting these extra calories from high fat foods and high concentrate proteins instead of sugars and carbohydrates. Sugars and carbohydrates actually break down fast and make breathing more difficult. Whereas high fat foods and high concentrate proteins take longer to break down, and the energy they give you will stick with you longer than the energy from sugar and carbohydrates will. The biggest thing with respiratory patients is they often tire out easily when fighting infections, so high fat foods and high concentrate proteins will help with energy. Another thing is chose snacks with high protein count that are prepared, prepackaged, or in liquid forms. There are a wide variety or protein drinks, snacks, juices, and jellos too. Personal note, avoid the gelatin ones; so, so gross. 🤢 At least I thought so...

As far as taste, it truly does stink not to be able to smell your food. A few tricks my spouse taught me were spice it up, make sure it has plenty of moisture, and mix up the textures on your plate. First the spice it up; I know it sounds crazy, but pay attention to what makes your nose start running and add those spices into your food. I notice that when my nose runs a bit, while trying to eat, that occasionally I will get a whiff of a bit of the smell of my food. Sometimes, not always though. Play around with your spices and see what might enhance the flavor for you. Second the moisture; certain foods like steak, chicken, pork when dry really isn’t that appetizing to me; kind of like your description of sawdust actually. However give me a juicy steak or chicken and I’m all there. Soups and things like that, add in extra broth to your plate or bowl; and don’t forget the spices here either. Also don’t forget the creams; like heavy cream and sour cream. Be sure to add these to your soups or broths, they have the added benefit of those extra calories too. That’s a win, win in my book. Third and last mix up the textures; when you can’t use your sense of smell while eating to experience that pleasing side of food, look for alternative stimulation while eating to make food more enjoyable. Different textures like creamy smooth items, rough course items, chewy items, crisp items, and so on; on the same plate can really be engaging to and will definitely add stimulation from your other senses. Another note, I don’t personally do this, but a few friends who can’t smell like colorful plates as well. If it looks inviting that can stimulate interest in your meals as well.

Please keep in mind that I’m not a registered dietitian or a licensed physician, so be sure consult your care team for an individualized care plan that is tailored to your needs. The calorie counts above were again, based for me personally taking into to account my complete situation. Your calorie requirements may be totally different based of your overall health picture.

Yours Truly,

Smile E. Turtle

 

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Thank you for your consideration!

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