What was your caregiver situation while getting a transplant?

I am without a partner too. Denny having passed away Dec 9, 2021. I have two adult children but they have their lives with kids and jobs. I am thinking about who I can ask to 24/7 care for me. Hopefully I can recover in 6 weeks from a bone marrow transplant. A big ask I know.

@swansm50, It has been a while since you posted here, and I want to check in and ask how you are doing. Are you a bone marrow transplant candidate?
Have you made any progress with finding a caregiver/or caregivers who can be available to you during your bone marrow transplant and recovery?

Reading this blog makes me realize even more how incredibly blessed I am. My caregiver is my husband. I’m 62 and he is 68. I had my liver transplant in June of 2022. I was sick for about a year and a half before my transplant and unfortunately continue to have issues post. I just came home from the hospital yesterday. It was my fifth visit since transplant for approximately 60 days total. My husband has done it all….from holding the trash can when I was so violently ill to pulling me up off of the commode when I simply did not have the energy or strength to get up on my own!!! My heart aches for those of you who do not have that support. If you are having difficulty with finding a caregiver, post a message here. Many of us may have some specific advise that may help.

I had a team of about 5-6 people from my church and my two daughters who were caregivers for the first month post transplant. Do not know how I could have done it without them. I could not. Then I had a meal train for a month and a half so I could eat 3-4 times a day. Could not have done it without these meals too. So, I still do not drive after 2 1/2 months and depend on my friends to drive me places. I have some lightheadedness and am back on pain meds for an internal mass and fluid, hopefully the doc will help with this. So this is really a 3-4 month recovery especially if you have any complications, at least for me. I am learning that I have to clear out my bowels more often too. All the best to you, BB

My older daughter was my caregiver while at Mayo for my transplant 12/7/20. I am so grateful to her for taking a month off work for me. I am single, so no spouse or partner which makes things challenging. My younger daughter is here at Mayo with me this week as I am having a procedure tomorrow, but for all my transplant follow ups I have come alone. Where there is a will there is a way!
Best wishes for your transplant!

So inspired by your post.
I've been concerned about my age 66 and having a liver transplant. Yet, you're 72. Was that decision hard for you?

@lynwarn, Welcome to Connect. By way of introduction, I received my liver and kidney transplant 13 years ago, when I was 60. I am glad that you have felt inspiration from reading @ajdo129 's experience.
Are you being considered for a liver 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

@ajdo129 your story is amazing and what a beautiful outcome and new life phase! I honor your fortitude. Sending loads of care to you.

WOW. Amazing story.
To your answer, at this time the doctors are talking transplant. At first, the doctor's attitude was as if they were going in that direction without giving me the option.
However, the plan is to place radiation seeds in the cancer tumor, treat the Hep C, then transplant. The liver damage is stage 4.
My research shares, but my questions lie with the patient. What they experienced physically and emotionally. Things the doctors don't say.