Waiting

Berriosa1234

so I will be putting out a blog post soon in our newsletter soon and i wanted to ask the community as you waited for your call for your transplant, what was it like? what did you find was your go to hobby to do while waiting for the call or the potential surgery? what kinds of things did you do with friends and family to help? please check out my blog and lets continue this discussion here in the coming weeks

-Alex-

Ldybug97

Can't wait to read it.

TServold

I was so bad at waiting. I think part of me chose to ignore the issue. I followed all the appropriate diet. I followed all the appropriate exercise and I religiously met with my care team. I did not inform too many people around me.

It was lonely, challenging and sometimes disheartening to go on that journey solo.

Coco

I tried to do exercise everyday. I was looking forward for that day because I knew my life would change for better.

Best wishes.

Ldybug97

When I was first listed for a kidney transplant, life still felt full and manageable. I was working, traveling, and doing everything I could to live beyond dialysis. Even though I went to treatments three times a week, I refused to let them control my life. I focused on finding joy in everyday moments and holding onto hope. But as time went on, my body began to weaken, and I was eventually removed from the list and told I was too sick to undergo transplant. Hearing those words was crushing it felt like time had stopped.

Eventually, my nephrologist reached out to the transplant center and fought to have me relisted as medically urgent. By then, I had to retire from work because my health had declined so much. I remember the day they told me to be ready at any moment I went home, packed my bag, and waited. That same week, my dialysis access failed, and I spent most of my time in bed watching The Jennifer Hudson Show just to find something that made me smile. Exactly one week later, the call came. After seven and a half years of waiting. I am grateful for the people who stayed the course with me. My medical teams, friends, some family and my therapist lifted me up on the hard days.

AliEm14

waiting always felt really surreal to me. I know they said any time, but it never felt real until it was actually happening. I’d never had a healthy before to relate it to so a lot of it just felt like carrying on as normal.

I did (and I credit my recovery to this) really work on my mindset and my embodiment during the waiting time. I almost used it like a bootcamp to train, like if I could get enough reps of actively being in my body without dissociating in before surgery, it would be more natural for me to take that shape after I’d had the transplant. I’d recommend that to anyone waiting - it made a HUGE difference. I really did think of it in terms of training for a marathon, where I was working on all these things to get me in the best shape possible for go time.