Transition to Adult Care

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Hey guys! I have officially been at Auburn University for a month, and man has it been a busy one (War eagle!). College is fun, exciting, and scary all at one time. You are meeting so many new people, while trying to figure out who you are and where you fit in. You are trying to balance your social life and make good grades at the same time. All of this is what a normal college student is going through. In my situation, I also have to balance my health on top of all this. While I’m still trying to figure out what this all means, I have a basic feel for what that entails. It is both strange and difficult to be solely responsible for your own healthcare.

I have always been more involved with my healthcare than your average teen. However, I have also always had my mom there to help me out. In my month and a half of being at college, I have gotten my infusion at the local adult hospital here.

Since I was diagnosed when I was 11, I have always gone to the same pediatric hospital and seen the same doctors and nurses who know everything there is to know about my health. Moving to a new state and having to go see a new rheumatologist where I don’t have the close relationship I had with my old one is tough. On top of that, I transitioned to adult care because now I am a legal adult as of August 24th. It also meant that I needed to go to my first adult doctor by myself, to meet my new rheumatologist on the day after my 18th birthday. The majority of pediatric doctors are very nurturing and are extra compassionate, as you have to be with kids. Adult doctors seem to be much more rigid.

However, there are pros and cons to pediatrics and adult medicine. The adult doctor that I have seen here is clearly much more used to involving his patients directly, rather than their parents or caregiver. He talked to me like I had something to say, and more like I was his equal. This could’ve been because I was very confident in telling him what I needed and what normally goes on with me during my infusions, but he seemed very understanding. He had to learn my entire very complex protocol for my IVIG. He had to learn everything about my long health history in just about an hour. After that appointment, which went very well, actually much better than I had expected, I was admitted to the hospital for my infusion. This also went very well, and I had no major drama which was fantastic. I was quite surprised because I had expected the nurses to be different somehow, but all of them were awesome and very nice.

Being in a new place for my infusion was a strange experience. One of the few complaints I had involved the food. My old pediatric hospital has a room service system. You call down and order exactly what you want and when you want it, and they bring it up to you in less than 45 mins. I guess I was somewhat pampered because of this :). This adult hospital had a schedule. They bring you breakfast at 7:30 whether you are awake and hungry or not, and they give you no choice on what they bring. You don’t like soggy mush in a bowl? Oh, too bad, that’s the only option. It’s the same thing with lunch and dinner. So, because I am a very selective eater due to my ulcerative colitis, I didn’t eat a single thing they served while I was there. I can’t have a lot of things because they upset my stomach, and I am not very willing to try new kinds of food in case they make me feel badly. I did ask my mom to get cereal the second morning when the downstairs cafeteria was open (which isn’t for very long and that was also strange to have such limited hours for the cafeteria).

I did have a couple of other concerns involving having two doctors with different ideas, a hospitalist and my rheumatologist, and I did have a strange experience about my potassium levels. However, that’s a whole other post.

The more that I am in hospitals, I realize that a lot of ideas sound better in words than in actual actions. I am guessing that they are created to bring up scores that are measured and displayed like this.

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This new hospital has a policy of giving every patient that is discharged a paper red folder with your medications, diagnoses and allergies. They require you to walk out the door with the red folder, no matter what the circumstances are. I have been going to get these same medications by infusion for 6 and a half years, and I am very confident that I know everything there is to know about what meds I’m on and my diagnosis. I do not need a red folder to inform me about this, especially because I am the one who informed the hospital about my medication list in the first place. When you are admitted, they ask you what medications you are on, and I provided them with this information. I definitely don’t need a physical folder to tell me about this.

I could tell the makers of the red folder more about how to handle my personal health than they could. I personally find it extremely pointless and ridiculous to make every single person walk out the door with a physical copy of a folder. We live in a technology based world. Every single person, with very few outliers, has a smart phone or a computer. We have access to technology, where information is very easily accessible. Why are we not providing people with their health information online in a format that they will always have with them? And I don’t mean through the patient portal because, lets be honest, those are the most worthless pieces of technology I have ever used. I mean we should provide the information through an app where they have all of their medical records and information in one place. (Caresync is a great app for this purpose, go check it out). Also, I wasn’t aware of this policy in the hospital, so I threw the folder away because it had no information I didn’t already know. When I left, the nurse sitting outside my room asked me if I had my folder. When I said I threw it away, she made me dig through the trash to pull it out. She made an immunosuppressed patient reach into the garbage and pull out a useless packet of papers. I do think the idea is a good one in thought, but not in action. I understand that some patients have their medications changed each visit and need something to remind them, and that is absolutely necessary. But do it with technology, which is something they will always have with them, rather than waste paper. I think everyone should have access to what they need to do after a hospital admission but not in the format that this hospital has implemented. It should be given in the format that makes sense for the patient. Maybe an 80 year old person wants a red folder, but as an 18 year old college student, I want it on my phone.

However, all in all, this first infusion in a new hospital was a good one, and I was happy with how it went. This is just my first update on transitioning into adult care. I will be writing about my experiences as I go through this new phase in my healthcare. This was just a quick update on how things have been going so far. As I experience new situations in college, I will be writing about those things as well. I already have a lot more posts that I need to write!

Thanks so much for reading. Sorry it’s been so long since my last post college takes up a lot of time! Please leave me comments on stories about transition or ideas on how to make it easier for me and others like me! Also, if you have any suggestions for posts you would like to hear my opinion on leave those in the comments and I’ll try to write about them soon!

New Speech Next Week

I am very excited to be speaking next week at Christiana Care in Delaware. They have asked me to speak at their employee awards ceremony, and I am very honored to be able to share my story and ideas with them. Also, it is still very hot in Florida with NO snow, so I am hoping that I will get to see some snow while I am there.

Anyone have any questions for me that I should include in my talk?
Any tips or suggestions from my past talks (many are posted here on my blog)?

Thank you to Christiana Care for inviting me. I really love getting to share my experiences and ideas. I think I become even more passionate about patient experience as time goes on. I would love to hear from you, so please leave me a comment.

Dignity Health Patient Experience Summit

Recently, I was invited to speak on the main stage at the Dignity Health Patient Experience Summit.I met Sandy and Jacob at the Cleveland Clinic in May, and I was excited to get to work with them. I also got to meet Jason from the Beryl Institute after months of twitter conversation. 🙂

It was really great to see how all of their hospitals are embracing the patient experience. I am always inspired to see people trying to make it better for patients, and it makes me hopeful for better healthcare experiences for all patients.

I was so happy that the leaders were willing to take pictures with me and my Cure JM bracelet, and they were nice to learn about Juvenile Myositis and Cure JM.

Here are some of the pictures from the event.IMG_0285

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