Probably one of the main reasons a transplant patient seeks an experienced Transplant Mentor is to talk to someone who has "been there before." It is true; one of the most valuable things a mentor can offer is a listening ear and some honest understanding. But, mentors who have been through the transplant process can also help guide pre-transplant patients in how to think about what questions to ask of the healthcare team. Hopkins transplant mentors are available to generally help pre-transplant individuals along the path to a healthy transplant.
Hopkins has more than thirty trained and supervised mentors in the lung, liver and kidney transplant programs. We asked Transplant Mentors some questions about how they manage their health and noted what they had to say.
How do you "take charge" of your own healthcare?
From the beginning…I had a friend in the form of my case manager at my insurance company. She told me to be a "squeaky wheel." After my evaluation workup, I was to go home and think about transplant. I had nothing to think about; I knew what I wanted to do. I wanted to start the process and then be involved and push it along. This is a decision I haven’t regretted. – Lung Transplant Recipient Mentor
I remember that I wanted to manage my own healthcare before my liver transplant, but I couldn’t remember a lot of things. I would go to meetings at work and bring up a topic, only to hear "Don’t you remember? You talked about that last week" and I had absolutely no memory of it. (I soon found out that forgetfulness is something related to my liver disease and that I needed to let my doctor know when it was happening.) So, I began to realize, that even though I wanted to be in control, I had to ask for help from some of the people around me. I relied on my family a lot during that time and together we stayed on top of everything the best we could. After my transplant, I regained my memory, but I still use a notebook to write down information. – Liver Transplant Recipient Mentor
Taking notes and asking for a copy of the doctor’s transcript of your visit, asking for copies of all lab work and keeping them in a file at home was a great help for us. We researched on the internet or talked to others for information we didn’t understand. We have been fortunate to have had great Drs. who will take the time to explain but the patient has to take time to prepare for his visit. We bring along a list of questions that are important to us. It’s your life and your health and ultimately you are responsible for it! If you didn’t know how to help yourself before you learned quickly! –Kidney Transplant Caregiver Mentor.
How do you make sense all of the information that is given to you?
For all of my meds, I printed out from the internet everything about them. Side effects always worried me. Every appointment, I asked the doctor specific questions when he gave me a new med. Also, I keep a week of medicine prepared just in case someone asks me to go somewhere. I would not want to carry all of those bottles with me. Also, making my meds up in advance helps me to stay on top of refills. –Lung Transplant Recipient Mentor
Someone gave me the idea to keep a notebook with me when I went to my appointments. (The same notebook every time.) I started writing down questions I wanted to ask the doctor before I went to my appointment and then the answers when I got them from my doctor. I found it a lot easier to make sense of everything. Before that, how many times had I left the doctor and thought, "Darn! I didn’t ask him this, or what exactly did he say about that?" – Liver Transplant Recipient Mentor
I have to answer this from a different perspective. I am or have been my husbands caregiver during a long rocky process…During this whole adventure he was not himself as far as thinking as sharp as usual (understandably)and also his memory and concentration were not great. So having someone with you at ALL doctors visits is so important! –Kidney Transplant Caregiver Mentor.
Do you have any tools that help you manage labs and medications?
Immediately post transplant all info was explained to my caregiver and myself. I admit I was initially overwhelmed with the medicine regimen…I made up a chart that shows all of my medicine instructions just in case some- one else has to answer questions or make up meds for me. All changes and discontinued meds are included. This chart evolved on its own (as my head could not hold the space for the specifics of sooooo many meds). –Lung Transplant Recipient Mentor
I found that it was important to keep a watch on my labs. I found out that I could get the results mailed to my home. I stared to learn what the tests were for. This made it easier for me to ask questions and to understand. – Liver Transplant Recipient Mentor
When I am prescribed a new med by a transplant doctor, I restate what it’s for and repeat the dose to the doctor or coordinator. Then, I ask the usual questions: when is the best time to take it, will it interfere with any of my other meds, and what the side effects are. I also ask it is a long or short term medication or how long I can expect to take it. I ask if I need to take it with food or not…I jot all this down in my note book and on my med list …if it’s in ink, I’m more likely to remember it. And, if I remember a question after I get home, I call and ask my coordinator. –Kidney Transplant Recipient Mentor
Mentors and other post-transplant patients all have wonderful tools and strategies that they use to manage the large amount of medical information and medications they receive. As you can see from each person’s comments, not everyone takes the same approach. This is because we are all different. The same approach will not work for everyone. As a pre-transplant patient, you can listen to how others have managed the transplant process, but you have to find the way that works best for you.
