What was your caregiver situation while getting a transplant?

Hi lynwarn. My backstory leads up to this moment. I retired at 66 excited about the next phase of my life. I planned to do more artwork, to continue teaching classroom teachers in using creative lessons to fully engage learning the core subjects and of course learning more about culture and environment through travel and classes.
My plans were interrupted by the death and need to manage the estate of my brother; the decision to move to Arizona from cold weather that triggered my asthmatic lungs to slide into pneumonia; the selling of my home of 40+ years; then the illness and death of my other brother. So that led me to late 2019 and a move across country; designing and building my dream home and studio which I finally occupied by late May 2021. COVID postponed teaching classroom teachers.
So I began having "get to know you" parties for the dogwalkers sans dogs, neighbors and more.
October 2021 I felt as if someone was using my gut as a punching bag and had all the symptoms of gall bladder and maybe liver dysfunction. By mid-November I was told I had inoperable bile duct cancer and that I had 2 months possibly 2 years to live until my body could no longer handle radiation and chemo. So I put in action plan B (prepare for my death so no one would face the chaos I had with my brother's estate) while actively pursuing plan A was to reach out to Mayo.
Even though I was "beyond their transplant age limit" according to my local doctor Mayo decided to test my endurance and will to live as well as all the other tests to see if I was a possible candidate. After weeks of testing I was put on "inactive status" on transplant list. To be "active" I had to go through 36 rounds of proton radiation and chemo; wait one month to have laporotomy to see if cancer had spread to other nodes; then wait for my MELD score and eventually donated liver.
Did I wonder if God's plan was for me to exit life now or was it to persevere to accomplish my next phase of life? Yes I did wonder. I decided that I was to persevere, to take on each step as if I were hurdling with eyes focused on each hurdle and never looking back or too far ahead.
Communication to everyone I knew with humor laced through details of each hurdle kept me going. Mayo team made it easy because of their positive attitude and great professionalism.
Are there challeges after transplant? Yes. Super cleaning food and hands; diet restrictions; reactions to meds and; the long healing process.
Is it worth it? Yes. Definitely! I can now live that post retirement phase of life that I had planned in 2016. After my 1st year transplant anniversary I will be contacting the local school district to offer free workshops for teachers (unfortunately I am too immune suppressed to teach in elementary classrooms). I have been ballroom dancing, working out in the pool, walking my dogs and offering holiday workshops in my studio for neighbors and friends. I have started work on a new series of art "Arizona Skies" and have other goals for travel and language learning. Though my life pace is slower because of my "off days" when meds or tiredness takes over, I have much to look forward and am savoring each moment with joy and gratitude. I would be dead now and unable to answer your question if I chose to let the diagnosis stop my life.
This is a time to realize dreams and savor the moments.
Hope this helps,
Barbara

Hi lynwarn. My backstory leads up to this moment. I retired at 66 excited about the next phase of my life. I planned to do more artwork, to continue teaching classroom teachers in using creative lessons to fully engage learning the core subjects and of course learning more about culture and environment through travel and classes.
My plans were interrupted by the death and need to manage the estate of my brother; the decision to move to Arizona from cold weather that triggered my asthmatic lungs to slide into pneumonia; the selling of my home of 40+ years; then the illness and death of my other brother. So that led me to late 2019 and a move across country; designing and building my dream home and studio which I finally occupied by late May 2021. COVID postponed teaching classroom teachers.
So I began having "get to know you" parties for the dogwalkers sans dogs, neighbors and more.
October 2021 I felt as if someone was using my gut as a punching bag and had all the symptoms of gall bladder and maybe liver dysfunction. By mid-November I was told I had inoperable bile duct cancer and that I had 2 months possibly 2 years to live until my body could no longer handle radiation and chemo. So I put in action plan B (prepare for my death so no one would face the chaos I had with my brother's estate) while actively pursuing plan A was to reach out to Mayo.
Even though I was "beyond their transplant age limit" according to my local doctor Mayo decided to test my endurance and will to live as well as all the other tests to see if I was a possible candidate. After weeks of testing I was put on "inactive status" on transplant list. To be "active" I had to go through 36 rounds of proton radiation and chemo; wait one month to have laporotomy to see if cancer had spread to other nodes; then wait for my MELD score and eventually donated liver.
Did I wonder if God's plan was for me to exit life now or was it to persevere to accomplish my next phase of life? Yes I did wonder. I decided that I was to persevere, to take on each step as if I were hurdling with eyes focused on each hurdle and never looking back or too far ahead.
Communication to everyone I knew with humor laced through details of each hurdle kept me going. Mayo team made it easy because of their positive attitude and great professionalism.
Are there challeges after transplant? Yes. Super cleaning food and hands; diet restrictions; reactions to meds and; the long healing process.
Is it worth it? Yes. Definitely! I can now live that post retirement phase of life that I had planned in 2016. After my 1st year transplant anniversary I will be contacting the local school district to offer free workshops for teachers (unfortunately I am too immune suppressed to teach in elementary classrooms). I have been ballroom dancing, working out in the pool, walking my dogs and offering holiday workshops in my studio for neighbors and friends. I have started work on a new series of art "Arizona Skies" and have other goals for travel and language learning. Though my life pace is slower because of my "off days" when meds or tiredness takes over, I have much to look forward and am savoring each moment with joy and gratitude. I would be dead now and unable to answer your question if I chose to let the diagnosis stop my life.
This is a time to realize dreams and savor the moments.
Hope this helps,
Barbara

Mayo can not accept govt money of any sort if they practice discrimination. I volunteer to advocate for several govt organizations. Discrimination appears to march on. Sad.