I spent 6 months in the hospital on a bi-vad waiting for a heart. Then 2 weeks in the hoapital receiving ost transplant treatments. Being discharged was a surprise and brought great joy. The spent 2 weeks in a hotel close to the hospital. Physical activity was not easy for those 2 weeks and required an escourt (wife) when leaving the room. It was a great relief when I went home where I continued to increase my activity. I linmited my physical contact and wore a mask. Quickly mastered my drug regiment. I remained out of work for 2 years, collecting disability.

1. Congratulations to all transplant recipients and the caregivers/family members! You have a new lifestyle ahead of you.
2. Accept any assistance you need. Others may mean well, but when what they offer is not fitting what you need, gently tell them that.
3. Move! Don't lay abed, or figure you can relax. This is a new job, to recover from major surgery, and exercising mind and body is critical.
4. Whenever possible, have that caregiver or family member with you at each follow-up appointment, to take notes and hear what your transplant team is saying.
5. If you are a solid organ recipient, you might have had a restricted diet prior to surgery. Now is not the time to go wild with foods you couldn't have before! Yes, everything tastes good, but remember you are still in a recovery stage. Go easy and slowly reintroduce those forbidden foods in to your diet.
6. For caregivers and family members, be sure to take care of yourself, too! All this is a big change from here on out.
7. Be grateful for this second chance. There is always a chance of organ rejection, but tuck that into the far corner of your mind. You're responsible for as positive an outcome as possible. That comes from hard work to recover from all of this. Mind, body, spirit.
Ginger

What can I share about my recovery from returning home from the hospital and now?
I had a pancreas only transplant, which entailed splitting me open "stem to stern", as the surgeon said. In other words, my scar began at the base of my breastbone and extended to the bottom of my belly. It was neither an easy surgery, nor an easy recovery for me.
Following surgery, we spent several weeks at the Transplant House before we were able to leave Rochester. We tried using the bus system, but I found the roughness of the ride painful and after one experience we used our own vehicle. Home is a minimum of a ten-hour drive, and I still felt pain at every bump and jostle on the road.
Once home I spent most of my life on the couch. Follow-up difficulties required multiple trips back to Rochester through the first two years. I was finally able to reduce trips to twice a year, just before I reached Stage 3 kidney disease and was referred to the Kidney Transplant Department.

How did I transition?
My father died in 2017, mother died in 2028, and I was able to fulfill their wishes for their funerals and internments. I am still guardian for my multiply handicapped son and an active mother for both of my children. I have taught myself to knit, not well, and streamlined many household duties to manageable tasks. I took each day as it came and did the best I could each day. I made sure essentials were done and left everything else go when I needed to. Most days I walk without assistance and for the others I have a cane, walker and wheelchair. I now contend with chronic fatigue, five limiting diets, continued monitoring of medications and lab work, orthostatic hypotension, intermittent incontinence, increased damage to my teeth, ongoing PT, autonomic neuropathy, Stage 3/4 kidney disease, and arthritis.

Neither I nor the physicians thought I would be able to improve/stabilize my kidneys, but here I am; still with my native kidneys, no edema, no dialysis, and few kidney meds. I never expected to be the way I am now, content to stay at home and putter at my own things, whatever I feel like for the day. My faith has carried me through and will sustain me to the end.

Pointers or Suggestions?
Take each day as it comes.
Do what you can and leave the rest.
Ask for help.
Accept help.
Focus on your recovery and health.
Rely on your faith. God will provide.