General
Creating Your Care Plan
If you were in support groups a few days ago we talked about creating a care plan. In the hospital and in those immediate pre/post transplant phases, so much is decided for you. As I've moved farther out from transplant, I still have the things my doctors told me I must do for my care but I also am moving into a space of having more agency. I want to create a life centred around what I care about, and part of that includes creating a care plan for my health that sets me up for success.
Your care plan will look different than mine because we're all very different and want different things. I've attached the slides we went through on Tuesday, which include some questions and jumping off points for you to begin thinking about what you want to include in your own care plan. What matters to you? Where do you want to go? What does thriving in life post transplant look like?
If you use any of these prompts, or if you want to brainstorm more ideas, I'd love to hear your thoughts!
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Transplant Patient
I love this topic and agree it has to be clinical but also inspirational - I try to motivate myself w little goals and rewards - exercise and social events are def parts of my plan!
Transplant Patient
yes! I love using the reward system
Transplant Patient
What rewards do you normally give yourself?? For me it ranges from shopping, glass of wine, time to relax, just a smile ). Sometimes the smile is the best
Transplant Patient
A fancy coffee is always my go to, or buying myself flowers. My husband has taken to buying me teddy bears as rewards when he knows I hit a goal, and I love having someone else cheering me on. If its a bigger thing I know I need to do, like a medical trip, I'll try to bookend the trip with fun things like going to a restaurant I love or shopping at a store we don't have at home.
My transplant team always gives me list of things to before my next visit so I try to meet their goals they set for me. I also try to set small personal goals for myself. Some I can reach some I cannot but some are failed due to my husbands health issues. But I have to say I see my transplant team next month so I am sure they will have another list for me. As for rewards I’ve never thought about rewarding myself maybe that will be a new goal for me.
Deb interesting share what they suggest.
Thank you Alisha for including the slides! I was sad I had to miss this support group.
My care plan is very basic right now since I am 18 1/2 years post-transplant. It's all about my diet and staying active. I definitely reward myself. Since I have a sweet tooth, usually my reward for sticking to my exercise or good eating habits is a yummy treat or fancy coffee.
Melsamm, The nurse of course goes over all of my meds and then they note any changes or new side effects. My doctor goes over me physically and then we talk about how I feel, do I sleep well, eating habits and any concerns. Then he gives me a list of things to do like updating all of my vaccinations, yearly test and labs. We talk about COVID and other things going around. He can see my chart from my PCP and all I’ve had done. He is always concerned about me seeing a dermatologist as well. We discuss my physical activities ability and I always complain about my weight. (Been a life long struggle.) we talk about my last MRI and CT and Biopsies as well. Then off to the lab. My coordinator will follow up with me on my labs. I’ve always been impressed with my team. I don’t see my surgeons anymore only gastroenterologist from now on. I hope!! We visit twice a year and I’m hoping to reach that once a year goal soon. I hope you’re doing well. What’s your plan??
Hi Deb, right now I am every three months with LTP due to newly dx. aml/chemo. I am off immunosuppressant meds and have been just taking prednisone until my kidneys stable and I will probably go back on prograf, low dose prednisone to protect LTP. It has been a big adjustment but my plan/ Teams plan is basically day to day and 🙏🏻🙏🏻 I respond to treatment. On a brighter note fall/🏈🏈 🎃🍁🍂 is coming still enjoying my rescue pup, getting outdoors when heat is not to unbearable. I hope you continue to do great with your plan. 💚
Melsamm Sounds like you have multiple teams working together and I’m thankful for that. Sounds like the plan is working. I’m so sorry you’ve had to go through this, especially after dealing with the need of a transplant and going through that. I’m like you fall is around the corner and it is one of my favorite times of the year. Hang there, you’ve got this!! I go for my follow up in September then I’ll know for sure how I’m doing!!
Deb, Thank you. Good luck with your check up in September. I will be sending positive energy that you will get GREAT news.😊💚
Melsamm Thanks!! I always get nervous but with the help of this group I know that’s normal!! I’ll be ok. 💚💚
😊😊😊😊🙏🏻 yes you will!