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Community Perspectives: March 2024:
What are the most helpful things you bring with you to the hospital?  There are various answers based on whether you are the patient, parent, friend, caregiver or all of the above! 

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Karina, caregiver to pediatric patient

The most helpful things we bring to the hospital would be the IPad for Alessandra ( whether we like it or not , the iPad keeps her entertained!), her blankets and favorite stuffed animal, her favorite pjs, battery pack and her pillow. For momma, my pillow, a blanket, battery pack, phone charger and change of clothes. I do bring a round of her meds just in case there’s a wait time before getting a room, her water and of course, I bring Lysol wipes, hand sanitizer and masks. Everyone is different and may need different things so I would make sure I have a list of the most important items you would need with you at all times.

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Marea, post isolated small bowel transplant, earned her wings April 2024

I have a to-go bag now. Makes it much easier when they decide to keep me. I have travel deodorant, toothbrush ,paste, and travel sizes of my favorite toiletries. They're nicer than the hospitals. I have cheap throw-away slippers, phone chargers, and robe. If they keep me, I'll have mom bring me my Kindle and my stuffed animal.

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Ben, post isolated small bowel transplant

The most helpful things for me when I go into the hospital are as follows: A smartphone/tablet and their charging chords. Luckily with our phones and tablets they offer lots of entertainment, ability to take notes, read, watch movies, listen to music and many other time occupying activities. Don’t forget the charging chords, without those the devices are little good in the long term Second: A comfy pair of headphones. You never know the situation you will be placed in once you arrive. It is better to have a comfortable set of headphones that you could sleep in or relax in. This allows you to go into your own world and block out the noise and craziness that is the hospital Third: I like to bring a blanket that I find extremely comfy and that in turn brings me lots of comfort. Sometimes you just need something you can snuggle in to and have a piece of home with you. Otherwise make sure to bring your necessities, like wallet, insurance cards and the like

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Lauren, post multivisceral transplant patient

I like to bring my laptop or iPad ( Netflix) and googling lol .. Underwear, sweatpants , - so I can walk in the halls- phone charger , toothbrush and paste , hairbrush and scrunchie, deodorant and body spray. I also always like to bring a snack like crackers or goldfish that I can keep in the drawer if I get a late night craving.

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Troy, Intestinal Rehab patient and his wife Sue

The most helpful thing we bring to the hospital is a couple of very soft blankets, for my husband (the patient) and myself.  And a fan.  My husband can't sleep without one.  If anyone has an "outbound" g-tube (for venting the tummy), remember to bring attachments (we vent Troy's g-tube to a foley bag, and connecting the two can be tricky.  Not every hospital carries the connector!

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Gwen, caregiver to an adult patient

 Helpful things for my husband were extension cord for chargers (this was the most helpful item!), a fluffy bathrobe, he loved the picture blanket, nailclipper, toothbrush, shaver, extra pair of glasses (his broke the first week). Helpful things for me include: food, drinks, sweatshirt, IPAD, charger, and lots of patience!

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Jess, post isolated small bowel transplant patient

I would have to say one of the most helpful things I bring with to the hospital are my parents. They are always there for support and to cheer my up when I need it. Other things that are helpful for me are a book or yarn and a crochet hook. Stuff to keep me busy. 

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Cindy, post isolated small bowel transplant patient

The most helpful things for me when I go into the hospital are as follows: A smartphone/tablet and their charging chords. Luckily with our phones and tablets they offer lots of entertainment, ability to take notes, read, watch movies, listen to music and many other time occupying activities. Don’t forget the charging chords, without those the devices are little good in the long term Second: A comfy pair of headphones. You never know the situation you will be placed in once you arrive. It is better to have a comfortable set of headphones that you could sleep in or relax in. This allows you to go into your own world and block out the noise and craziness that is the hospital Third: I like to bring a blanket that I find extremely comfy and that in turn brings me lots of comfort. Sometimes you just need something you can snuggle in to and have a piece of home with you. Otherwise make sure to bring your necessities, like wallet, insurance cards and the like

Community Perspectives: December 2023
How do you handle family members who do not understand your illness over the holiday season? 
If you are the caregiver how do you help your loved one handle these situations?

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Lauren, post multivisceral transplant patient

"My family has been very understanding of my condition and what I was able and not able to do.  A lot of times they would eat when I wasn’t around or make me a shake or something if I wanted to sit and talk with them all. They always tried to keep everything positive and that is what is most important."

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Jess, post isolated small bowel transplant patient

"This year I will be celebrating my 8 year transplant anniversary. Over the years my family has continued to be more in tune to my health needs as I make sure to tell them what I need. Last year everyone even took a Covid test before getting together over the holiday. I am grateful my family is so supportive."

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Marea, post isolated small bowel transplant, earned her wings April 2024

"I've been very lucky. My family is very understanding of my situation. They've been at the hospital with me on multiple occasions.

I'm open about answering any questions they have and have participated in my care."

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Cindy, post isolated small bowel transplant patient

Generally, I handle family members who do not understand my illness around the holiday season the same way I handle friends or family who do not understand it the rest of the year!—I try to do the following:

·       set boundaries, be honest and allow myself to do something for just a small bit of the time together if going for the entire time is going to be too much for me; or say no; or give myself the space to reply to a conversation or text when I’m comfortable doing so; or go to the part of a get-together that I’m more comfortable with—maybe the social hour instead of the meal

·       try to take family at face value realizing that sometimes what I interpret as an annoying question or judgement may be their attempt to understand something foreign to them. I find that people who love us tend to want to try to help and some will show this by offering ways to “fix it.” I find it helpful for me to thank them for their suggestions/concern and, sometimes, try to gently and simply explain why something may not have helped, but then to follow it with some things that do sometimes help manage my symptoms. 

·       if food is involved, I try to bring something that I like and might be able to have a bite or sip of if I’m able. And I find that if I put a cracker or something small on my plate and carry a cup around, people assume I’m eating and drinking a bit and don’t notice that I’m not! 

·       realize that many others in my family have significant illnesses or struggles that they are dealing with as well. While few people have the same illness and complications, most people have sufferings that they also struggle with and this can unify us around the holidays, in particular.

The holiday times seem to be a time where the sense of loss is sometimes magnified—loss of the ability to eat or enjoy food, loss of relationships with people when the chronic illness may have come between us in a negative way, loss in the ability to find and use coping skills, loss of symptom control if I opt for a bite of something forgetting what the side effect is, etc. I find it helpful to leave myself the space to grieve the losses. And to refocus on what my goals are such as relationships over food, or the deeper significance and meaning that the holidays tend to have for me, and ways to enjoy them with those I love. The joys that come to me amid the misunderstandings and despite them often are profound.

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Karina, caregiver to pediatric patient

"For us, education is key when we are talking about family members and friends who may not understand the transplant journey and especially during the holidays. Thankfully, our family and close friends are very supportive and understanding. Of course, it took a bit of time but by explaining the “what ifs” we were able to educate and put things into perspective. We also had to remind them to please stay away, and let us know if someone is sick so we can plan accordingly. It’s very important to always keep Alessandra on top of mind and that a common illness may not be a big deal for them but for us, it maybe hospitalization or even worse. The life and wellbeing of our daughter is in our and their hands so we, as parents, will do everything in our power to keep her safe and healthy even if we have to skip parties or gatherings. We will find a way to have wonderful holiday time while remaining safe and healthy. “

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Ben, post isolated small bowel transplant

"For me personally I have been very blessed with a family that does their best to understand. It is hard at times when around family gatherings or groups to help people see that I might not be able to eat or do all that they can. If I explain real simply why and let them know they can always ask questions, it generally puts them at ease. Family dynamics are different for each of us, but most people who care for us just want to make sure we are okay. That sometimes can come off a little rough. Just going in knowing that people are curious and want to help; and then explaining super simply the complications from your health can make all the difference."

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Gwen, caregiver to an adult patient

 "The holiday season intensifies the challenges of managing chronic illness. When you are with loved ones, even though the affection is present, it can be difficult and painful to join in all the festivities. I have had moments during holiday dinners when I retreated to the bathroom to shed tears, only to return with a forced smile and heavy heart. There were also holidays when we had little desire to join in the festivities but felt compelled to do so for the sake of our children. As time went on, I discovered what works for my family to make these holiday gatherings enjoyable. I also learned how to communicate our needs."

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Troy, Intestinal Rehab patient

"It's not easy showing grace when others don't understand the extent of your physical dilemma, in my case, not being able to eat by mouth and having an g-tube bag (which I put in a foley bag).  Nonetheless, I gain great satisfaction from creating dishes for my family and loved ones to enjoy.  I love to cook!  I guess it is my hope that this brings them happiness, even if they have reservations toward my condition.

 

They understand my energy may not match theirs, so they structure opening presents, etc. for short timeframes, allowing me to better participate and be involved."

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