I kept a notebook in my purse for appointments, and kept a log of what medications needed to be changed, when they started, when they stopped, side effects, etc. I still keep a notebook with me at all times!
Kristin, transplant recipient
You need someone with you taking notes, asking questions and interpreting answers. Bring a binder with you and take notes. Create a spreadsheet for medicines and bring it to all appointments. Create a daily pill box and a system because you are on a lot of pills and it’s difficult to manage. Get a binder to keep records of your blood counts, and know what different blood tests mean. This can help you indentify when you are not feeling well and why.
Greg, transplant recipient
I started a medical journal for my husband when he was diagnosed. It was an invaluable tool as we moved through transplant, as I could go back to locate answers needed.
Stay connected and organized
I suppose the primary thing is having a top-notch caregiver! I just couldn’t manage it on my own. My wife is a very organized person and helped me manage everything. Second, is being connected. My transplant center’s website summarizes appointments, latest labs, direct emails to doctors, etc. I also signed up for CaringBridge®, which was very helpful. It’s a website where you can journal as often as desired. It can alert people of new updates so we do not have to manage 25 phone calls daily. Folks mean well, but repeating the same story can be wearing. Friends and loved ones can just click on your website and see how you are doing. They can respond to your entry and you can read their reply and respond, or not, in your own time. Very helpful.
Stuart, transplant recipient
RxmindMe is a great app for medications, especially post-transplant. I love it.
Lisa, transplant recipient
I used the My Med Schedule® app for all of the medications that my young son had post-transplant. It was really a great relief to have a reminder and a place to check every time I gave him any medication.
How do you stay organized after transplant? Share your tips and suggestions on our blog or check out our Patients Connect Facebook page to see more ideas from other patients and caregivers on this and many other topics.