From their very first breath of life primary ciliary dyskinesia (PCD) patients begin their life long battle against bacteria and debris that they breathe in. The lungs are perhaps the most environmentally exposed internal organ in our bodies. As a PCD patient ages the bacteria that causes infection mutates and becomes harder and harder to treat. This physiopathological progression leads to numerous hospitalizations to treat infections and stabilize patients with PCD with aggressive airway clearance and intravenous antibiotics. Oftentimes these hospitalizations come without warning during a normal pulmonary followup or following an acute onset of exacerbation symptoms.
In my personal experience with my PCD there is a very real need to have your bags packed and ready to go on a moments notice with life necessities packed way inside them. I most always have my “Go-Bag” ready and waiting. I routinely rotate items in and out of my bags to keep things fresh and updated. My go-bags take the stress of unexpected hospitalizations off of me and off of my Mister. He doesn’t have to worry about rushing home to throw together items I might need, or think that I will need for my hospital stay. I also don’t have to worry about figuring out how to get my things if I'm hospitalized. Nor is there any last minute dash home to retrieve my things, myself, before reporting to the hospital admissions office. Go-bags are a great tool to help relieve some of the chaos in my PCD life.
As I’ve gotten older into my forties and my bacteria has mutated to near antibiotic resistant. My medications have changed to harder to get medications, and Ive even had a port-a-cath placed for IV access. These harder to get medications may not be available at your hospital. And if you are like me my port isn’t a power port-a-cath, since it’s main use is antibiotic therapy. Believe it or not hospitals do not routinely carry non-power port-a-cath needles for port access. I always carry extra port needles in a small zipper pouch, in my purse, at all times for emergencies.
Another issue for aging PCD patients is our use of non-mainstay inhaled antibiotics for our breathing treatments. Last year I had a surgical procedure and was admitted post procedure due to post operative respiratory distress to a major metropolitan hospital, in the Twin Cities in Minnesota. Very much to my surprise their hospital pharmacist asked my Mister to return home to retrieve my home supply of Colistin, because the hospital pharmacy didn’t have access to get any for my breathing treatments. I also have a ton of medication allergies because not only was I gifted with PCD from my folks; but my mother’s sulfa, sulfate, and sulphites allergy was passed on to me. That leaves a ton of allergies to medications in pill form. Something I can’t take orally in pill form due to anaphylaxis, can be given intravenously in liquid form without the preservatives often found in pills that I am allergic to. Upon hospitalization routinely I am hit with, “We don’t have your exact medication, but here is this and it has the same active ingredients. So it will work the same.” Ummm, in my situation it’s just not the active ingredients that send me into anaphylaxis it’s the inactive ingredients as well. So it is not uncommon for me to have to bring my inhalers or mediations that I know the hospital is not going to have. Then there is airway clearance with breathing treatments at the hospital, so I take my own vest garment for maximum comfort. I do not take the air generator part of my vest system though, you know the actual machine; actually my home hospital frowns on taking your machine portion in to their facility due to their cross contamination policies.
Other areas to consider when deciding your essentials for your bag are entertainment, snacks, and drinks. PCD patients are often faced with contact isolation restrictions while hospitalized due to the poor understanding of cross contamination of bacteria risks. And then like my situation, now I consistently culture antibiotic resistant bacteria, so I’m always in isolation. I need things to keep busy, and I know what I like, but it is hard when being inpatient to go out and retrieve things to keep me busy. I’ve had nine day inpatient stays where I never even flipped on the hospital television, thanks in part to my iTunes library on my iPad. Do not forget to pack your devices’ power cords. An extension cord, or two, as well as a power strip might be a good addition to your bag. My current home hospital recently instituted a sugar ban on all hospital food services; no sugary drinks of any kind. Try getting a juice from your unit nurse when your sugar is low, from your lack of desire to eat due to being acutely sick. It is a nightmare! Now I pack my own drinks and snacks. Snacks because let’s face it, a slice of cheese and a pack of two saltines when you are hungry outside of normal room service hours is a pain. And if you like coffee, don’t forget your own sugar packets and cream; good luck finding those too. I've been known to sneak over to the Starbucks on my hospital campus a time or two while dragging an IV pole along behind me. And to pull off that kind of visit to the local Starbucks, I'm obviously not in a hospital gown and slippers either. Nope, I pack my own lounge clothes and pajamas. They are the first thing that I change into out of my street clothes on admission. You can virtually wear your own clothes while in patient and even for most procedures as determined by your attending physician/hospitalist/floor doctor. I even wore my own lounge clothes into my last port placement procedure. The interventional radiologist who placed my port said as long as I was comfortable, he was fine with no hospital gown. You will find a lot of places work with you, and if you don't ask, they don’t bother unless it strictly goes against hospital policy.
It is because of the aforementioned things that I now actually have multiple go-bags for the hospital; one for is my actual go-bag with the basic essentials to get me through those first days, one is a medical go-bag with a my medicine, vest garment, port care needs, one is a craft/entertainment/snack/drink go-bag, and one is a long haul go-bag to get me through those long hospital admissions. Ultimately the number of go-bags that you need really depends on your personal preferences, however you should have at least one go bag packed and ready with your essentials for a short stay at all times. It would be a great habit to get into, just throwing that go-bag in your trunk on your way out the door for all clinic visits.
Recently I asked my PCD community the following question, “What do you think is essential for your hospital go-bag?” Here are their answers; names have been omitted to protect patient privacy. Some closely related responses may have not been included.
- Cell phone charger and hair ties!!!!!
- Kindle for me ♥️ cosy slippers or slipper socks, dry shampoo.
- In all seriousness, we actually take our vest. Our hospital only had wraps and my PCDr is autistic to boot. Anything we can keep familiar the better. And he loves HIS vest. 🙂
- Vest, pajamas, clean underwear, and his computer and phone.
- Mine brings his stuffy. 100% of the time. And Hogwarts blanket.
- For my 17yr old, vest- Pillowcase from home, loose comfy sweats, slides, chargers, Chap stick & crossword books!
- Cell phone and charger, underwear, toothbrush and paste, brush, blow dryer, slippers, housecoat, book, shampoos and that kind of stuff (I don’t want to pay for theirs.)
- PJs, blankets, snacks, cellphone and charger, deodorant, toothbrush. That's what's essential for me.
- For our 7 year snacks are a huge thing! I make sure to pack granola bars, apple sauces, usually Goldfish crackers & Bear Paws. My son is always always hungry & so tiny. The meals usually provided by the hospital are totally insufficient. Other than that we bring his backpack with iPad, charger, favorite stuffy & blankie & a book.
- Favorite blanket, pillow, pj's, phone, laptop, earbuds, chargers, extension cords for chargers, lotion, (bathroom items), chapstick, cute socks, colored pencils, coloring book, favorite insulated cup, candy, chips, favorite snacks, favorite stuffed animal.... menus to order food from restaurants.
- So we don’t we bring a ton...
But a must is vest, slippers, blanket, pillow, and extra underwear. (Since my son is younger he’s been through a few pair of undies with antibiotics... and it’s not pretty). Sometimes it’s nice to have snacks in my purse. But the most are above.
The hospital we typically stay at tend to provide a lot of the distractions for us.
- My daughter always has her PCD blanket, fuzzy socks (the best), Aloe vera kleenexes for that sore nose. hand sanitizer, a cuddly, doesnt matter your age! Snacks essential oh and music.
- Their own pjs. Favorite stuffed animals, snacks, and their phone of course.
- Chargers and cords! Pens and a small notebook. Contact lists of important friends/family just in case you need to have someone else make a call for you. A cozy blanket for the parents it is always cold overnight!
- Snacks and the Xbox are how we survive extended hospital stays. I also second slippers!
- Ok so most people would classify this as essential but for me it is. About 14 years ago when I was initially diagnosed and I lost my lung, my little brother bought me a teddy bear. I was in the ICU at that time and he was too young to come into the ward. We have always been super close. This was his way of being there for me. This bear has since then gone with me to hospital with me every time and reminds me that no matter how bad things get I am never alone. Phone charger
- A book!! Always a book! Or if you're not a big reader, some kind of portable entertainment
- For me, nail polish. When I'm super sick, I don't care about my nails. But as soon as I start feeling a little bit better, painting my nails cheers me up and makes me feel a little less gross, since I inevitably have greasy hair and limited shower access... So, whatever your thing is that makes you feel put together and happy. Look better, feel better.
- Also, your go to comfort food. I make sure I've got a variety of snacks to satisfy whatever I'm craving. I even take my own tea bags so I have unlimited herbal tea.
- Slippers or flip flops that you can easily put on when you get out of bed and not step on the hospital floor.
- I also hate wearing a hospital gown and will always just wear pajamas or comfortable workout clothes unless I absolutely have to wear a gown for a procedure. I pack tank tops (easy to put on with a picc line) and zip up hoodies/ sweaters that have oversized sleeves I can easily put on over an IV or picc line. Layers because I constantly get hot, cold, hot, cold from the medications (and/or fevers).
- That’s such a good question. Comfortable pj's for if chilly or hot and good book is a must for me. Oh and some biscuits. Oh and nice smelling soap. I bet I think of more later lol.
- phone charger!
- I always take my own comfy clothes-leggings, pjs, layer type shirts for the temp changes and easy telly/iv line use, slippers/fuzzy socks, coloring books, word finds, iPad with movies, music, and books, ear buds, and chargers. My own cozy blanket, window clings for feel of home. And I always have my normal shower routine stuff (good lotion and body wash, make up too!) Because toward the end of hospitalization it's a good sign if I tried more. 🤣🤣🤣 I always take sanitizer wipes and baby wipes. Mints for when I am nauseous. I'm sure I'll think of more.
- Extra-long phone charger, eye mask for sleeping with too many lights on, and spares of any medical bits that the hospital isn't likely to have. And a one-page summary of my meds and recent medical history so I don't have to recite it over and over again when I'm short of breath :)
- Headphones, phone charger. Maybe the notebook. Clothes and my glasses but i barely put them off
- Comfy pjs, your own pillow and fuzzy blanket, things to keep you busy (I go crazy when stuck in bed). Take your own vest if you have one it will save $$ off of your hospital bill. Snacks and drinks because hospital food is awful.
- Yes- chocolate! I'm very lucky, my visitors usually ask if they can pick up anything for me to eat on their way to the hospital. Usually tacos or skittles. :D
- Note pad and pens, lotion (so dry and all the hand washing) word search or crossword puzzle books, an uplifting quote, warm socks....
- Slippers! I always bring slippers
- I always load plenty of films and box sets on my iPad. I always wear clothes never in PJ’s only to sleep.
- Nice hand wash, speaker as in my own room and gives my ears a break. My favorite
- hot chocolate books I never get round to reading (who am I kidding)!!!😊
- My tablet, My pillow (I wish,I don't take it cause of germs) hate hospital pillows and because of all the coughing, my own pads the hospital ones suck.
My husband, although it's hard getting him to fit in the bag. No joke my hub stays with me every night.
Whatever your needs, we hope this gives you an idea on items to tuck into your go-bag to take away one more item of stress fromliving the PCD life. Remember that needs change over time, and some items do not handle longterm storage in your go-bag. Other things are just not practical to always keep in your go-bag, so create a list of missing items for quick reference during the rush to pack for a hospitalization. Stay safe and “Turtle On” my PCD peeps!
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