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PKD Will Not Beat Me

Tips for caring for yourself during hospital stays

One of the first things I love to do when I’m home for the night is put on my comfy clothes. There is something so nice about being cozy in your own home. Our homes are our safe places—with things, people and pets that fill our hearts with joy. It is also the best place for healing and recovery. When we are removed from this environment and put in the hospital, it is a shock to our minds and bodies. It’s hard for me to fathom that I spent almost a year in the hospital when I was 18. I’ve been in and out of hospitals countless times in my life, which has taught me both important and simple lessons to help make hospital stays successful and tolerable as we focus on the goal of getting back to our safe haven – home.

Below are pictures from my last hospitalization in May, along with tips for caring for yourself during hospital stays that I’ve learned throughout my journey.

1. Being in the emergency room is no fun! It is scary to go through the standard work-up of getting an IV placed, lab work and scans to determine what is wrong. It is always nice to have someone there to hold your hand. If possible, try not to go through this alone. Support is invaluable and helps ease stress.

2. We will most likely be seeing doctors in the hospital that have never cared for us before. Be prepared to see new faces and share your medical history. I am always prepared with my medical history spreadsheet that contains the medicines I take, allergies and a full history of all my medical issues, surgeries, etc. It is so nice to have this, because if I am not feeling well enough to talk, I can hand it to the doctor to review. I also make sure that any emergency room doctors consult with my nephrologist so everyone is on the same page and I receive the best care.

3. When we’re admitted to the hospital, it is vital to focus on our care versus trying to update all of our friends and family on how we are doing, which can be exhausting. Delegate that task to someone else until your health is stable and you are feeling up to it. For example, when I was in the hospital, I gave my phone to my mom and let her respond to everyone that reached out. Use your valuable time to rest. Take any chance you can get to nap. Here is dad and I making the most of some quiet time.

4. There is always so much going on in the hospital. Doctors checking up on you, nurses coming into your room, your vitals being taken, transport stopping by to take you for a test and phlebotomists drawing your blood. With so many distractions, it is important to take notes and write down questions before your doctors come in. As things progress with your care, make sure to keep all of your doctors in the loop to ensure that everyone is working together as a team.

5. Once you have the energy, freshening up helps to make you feel human and good about yourself. I had my parents bring in my face cleaning products, deodorant and perfume. The nurses commented on how good my room smelled and by cleaning up every day, I felt more “me” versus a “hospital patient.” Also, I can only take a hospital gown for so long. I enjoy changing out of the gown and into comfy clothes, which helps make me feel less sick. In addition, having long hair and laying around most of the day does not go together. I find braiding my hair is a simple way to prevent tangles and keep it out of my face and easy to care for. A big thanks to my mom for being my hairdresser.

6. Having visitors can be good and bad. There is a time and place. I don’t like to have visitors early on in my hospital stay. There is always a lot going on and I’m usually not feeling up to it. However, as the days go by, it is nice to have friends and family stop by. Allow visitors when you’re ready, and for short visits. This can really help boost your morale.

7. Being stuck in a small room for any amount of time is tough. If you’re able to, make sure you go for walks – for your health and sanity. I get approval from my nurses to go outside because fresh air does wonders for my soul. Go out and take some good cleansing breaths, play games, sit down and close your eyes, whatever helps to rejuvenate your mind, body and soul. Make sure you go with someone in case you start to not feel well, and wear a mask for your protection and others’.

8. If you are far from home, like I was during my last hospital stay, try to Facetime with your loved ones. It was very hard to be away from my husband and it was so wonderful to see his sweet face, and our cat, thanks to Facetime.

9. Waiting for results and getting through each day can be difficult on ourselves and family. Try to support one another and do something together that you enjoy, like playing games or putting your feet up and having memorable talks, which is what my dad and I seemed to do every night. Try to make the best of your situation. Can you find my name in the Boggle game? We did not stage that. How fun?!

10. Pay attention to the care you are receiving and ensure that you are getting your meds on time. You can’t rely on others. Anytime a nurse would give me meds, I would ask what they were, confirm I was supposed to take them and write in my hospital journal what I took and when. I discovered that the tubing on my IV machine and my dressing on my IV was to be cleaned and changed every couple of days and that was not being done. I immediately got that taken care of and made sure it did not happen again. Nurses have a lot of patients to care for. It is our job to make sure that we are getting the best care.

11. Humor is so helpful when enduring health issues. Keeping the mood light, laughing and smiling is important when going through difficult times. My mom purchased a huge “Hello Kitty” balloon for me and it brought so much joy to the nurses, myself and all of my visitors.

12. If possible, have someone there to help you at the time of discharge. It is nice to have a “second set of ears” to listen to your discharge instructions on how to care for yourself, any changes in your meds, and when to follow-up with your doctors. My mom was a trouper and packed up my entire room and drove me home. She also walked to the car with the amazing “Hello Kitty” balloon, on which she got many compliments.

13. Many times when you are discharged, you aren’t 100% better. We endure a lot in the hospital and our bodies need time to recover. It is important for us to take good care of ourselves and rest so that we heal properly and don’t need to go back into the hospital. During this process, it is important to do things to help clear our minds from all that we went through. For me, after my last hospital stay, my dad and I went out and flew a kite and we went for some scenic drives in his Corvette. I made sure to stop and smell the roses.

What has helped you care for yourself when you’ve been in the hospital?

Comments

  1. Helene Scherer says:

    Agree with all of these, especially walking & wearing your own pajamas! Learn to reset your IV machine yourself so you aren’t stuck waiting for the (very busy) nurse. Be your own best advocate: check your meds, make sure your diet is properly specified, and BE SURE TO QUESTION ANYTHING NEW THAT YOU WEREN’TEXPECTING! I’ve caught things that weren’t ordered for me.

  2. April says:

    Great suggestions, thank you! The hair suggestion made me laugh… yes, have to braid it or bun it!! 🙂

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