You Need an Organ Transplant: 10 Pieces of Advice from Those Who Have Gone Through It

You Need an Organ Transplant: 10 Pieces of Advice from Those Who Have Gone Through It

You Need an Organ Transplant: 10 Pieces of Advice from Those Who Have Gone Through It

You just found out you need an organ transplant. Whether it’s a heart, kidney, liver or lung, there are some key fundamentals to keep in mind as you navigate your transplant journey. Who better to share advice than those who have been through it?

Below are words of advice transplant recipients shared on Facebook and Instagram from their experiences during their transplant journeys.

1. Attitude is Everything

“Never give up hope, think positive, and remember that medicine, techniques, and discoveries advance constantly, and they are miracles on the horizon … be grateful for the gift of life.”

“Always have hope. Never give up as miracles do happen.”

“Keep a positive attitude. Try to stay in the moment. Take each step as it comes.”

2. Be Your Own Best Advocate

Being your own health advocate can be intimidating at times, especially when you’re not feeling well or are overwhelmed by the sheer amount of information your transplant team has presented to you. Whether it’s your first appointment or your 30th, advocating for yourself is an important step in the process.

“Advocate for yourself, my family worked really hard at finding a match and transplant center that was a perfect fit!”

To learn more about how to advocate for yourself as a patient, check out our webinar How to Advocate for the Best Care as a Patient or Caregiver.

3. Write Everything Down

“Write everything down. It will help you be a better patient and a better advocate. Take the news one minute at a time and try not to get overwhelmed by the deluge of information coming your way. If you feel like it, cry or scream or process however you need, but set a time and don’t allow those feelings to control you. Your miracle is coming it will be hard AND you can do it!”

4. Record Your Doctor’s Visits

“Record your doctor’s visits so you can replay what was said. It’s hard to remember so much info. Have faith in your doctors and transplant team. My team at Kaiser Santa Clara is amazing! Follow instructions on pre- and post-transplant care.”

Feel confident asking your doctor questions. Our downloadable doctor discussion guide can help you start the conversation.

5. Have a Support System

Whether it’s a friend, family, or a licensed professional, many transplant patients find support by connecting with others.

“Take it one day and one procedure at a time and find a support group to get connected with.

“Get a social worker. The one I got at dialysis helped me sooooooo much.”

“Talk to other transplant patients and get the real honest information about transplant life.”

You can also connect with others in the transplant community by downloading the AlloCare app, a free app for people at any stage of their transplant journey.

For more insight into the caregiver experience, check out our webinar Caring Care Partners.

6. Know There Will be Challenges

The transplant journey can have its share of highs and lows, and transplant recipients advise those on the waitlist to know that going into it.

“Buckle down. It’s going to be a challenge.”

“It’s going to be a process that will have lots of ups and downs. Most importantly, don’t give up … never give up.”

7. Prepare Your Mind and Body

Some transplant recipients shared that they began meditating, doing yoga and walking daily; exercise helped them to both mentally and physically fit for the journey ahead.

“Get in the best shape of your life.”

8. Be Patient

“Believe & have patience with yourself.”

9. Find Your Positive “What If”

“Find your WHAT IF and get a FIGHT SONG. ‘What if’ are two very powerful words. As a pre-transplant patient I felt what if … I don’t make the list, what if I am turned down for surgery, what if I don’t wake up, what if I am in a coma, what if I DIE … what if … Never thinking about living because of dying … the odds of getting a transplant seemed insurmountable and struggling to see the other side of what if … every day searching for the courage and strength to move forward … What if I make it through surgery, what if I LIVE? What if I see my daughter graduate, birthdays, anniversaries, help others, etc., I couldn’t see the positive WHAT IFS before transplant, but I see it very clearly now. I never imagined the relationships I would have with family or the people I would meet that some became friends. The overwhelming gratitude of being a recipient and seeing my purpose to help others is absolutely beautiful. #Grateful every day for the life I have been given by the generosity of my DONOR.”

10. It Works

“It works, I had it 7 years ago in Toronto.”