Note: I waited until today to write this story. Before you read on, please say a prayer for the Heim family as they gather today to celebrate the life of the loved one lost in tragedy, but that made this whole story possible. Thank you Natasha. You’ve changed my life.
On Thursday, 12/1 a dear friend and colleague lost his cousin under tragic circumstances. It wasn’t until Friday that I would really know anything more than he needed prayers and support. As news came in slowly, I received a message that his family had decided to donate her organs. We had a short conversation about how that decision would change so many lives. Little did I know at the time that it would drastically change mine.
Looking back through the texts and chats we shared as I explained the highly regulated and intricate process of donation, I continued to share that even though I probably would not be a match, this was an amazing thing. I have been told by several doctors that I was going to be a tough match and that my wait would likely be between 8 and 10 years if all things went well. In all of the things I read through, one line jumped out:
Friday 7:48pm
my cousin is donating all her organs
Liz (my friend’s wife and long time family friend) said she should give a kidney to you
Because organ donation is a tricky thing, there were many conversations about process and procedure to try and designate one of her kidneys for me. I was hoping to be a comfort, but honestly, had no anticipation that I would be receiving this kidney.
Over the last two years I have been steadfast in trying to make sure that I didn’t have information about donors being tested. It all felt very strange to me. Of course I know I’m loved. My concern was that people who were not a match would be disappointed, that people who did not want to be tested would feel badly about their decision, that people who tested and were a viable match would feel pressured to donate. It’s a psychological roller coaster on both sides, for me and for potential donors. So here we were on Saturday afternoon talking about a directed donation. A process that after the passing of a loved one involves the family, the hospital, paperwork, OneLegacy, UNOS, UCLA, lots of cross matching and a call.
On Saturday at 1:12pm the texts about how to contact OneLegacy began. I had one more Operation Christmas Child Packing Party to attend, so I headed off to it and packed a few more boxes to end the OCC season. As I walked to my car at 2:48pm I got a text with an attached photo of the One Legacy form. My friend’s aunt needed my information. After a few more texts, she and I talked as I gave her everything she would need to complete the form. I was so aware of her tragic loss and in awe of the calm conversation we had to begin this process. I’ve never had such an overwhelming sense of grief for a friend and cautious bubbling joy at the same time. Completely surreal.
At 11pm we got the call. In just under 9 hours we had gone from a conversation about sharing information to the first call. Andrew got out of bed to answer the phone. I made him ask who it was to be sure. It’s UCLA. When I got on the phone, the coordinator simply said, “Do you know what’s going on?” My response was bizarre I’m sure. “I think there might be a thing, but I don’t know if it’s a thing so I’m not sure.” Then she said it, “Yes. The kidney is yours. The cross-match was negative. That’s a very good thing.” What??? A match? She said she would be calling back in the morning to let me know more, but that I should be getting ready to come to UCLA. I would get the call and should be ready to leave when I get it. How is someone supposed to sleep after that? I went back to bed. Got up. Jumped around the room. Reviewed the whole conversation with Andrew, then called my mom. She had no idea any of this was happening. I started the conversation with “Okay, here’s what’s going on.” We were still cautious and knew that everything could fall apart even if we went to UCLA, so there we were excited, but reserved. Shaking. It took a lot of deep breathing to get to sleep that night.
One week ago today at 9:12am I got the three minute phone call for which we waited only two short years.
At 9:23am I texted my friend. “Just got the call. Heading to UCLA.” He was texting in church as he responded, but I’m sure no one cared. A message from his aunt followed, “Every cloud has a silver lining.” From the depths of grief a comforting word from a mom. Those gracious words will always be with me. Then the one that clinched it, “You are part of our family now.”
We got to UCLA with a parade of family and took the place by storm. Still not sure if this whole thing was going to happen, we waited and talked with each person who came in to tell us about each step along the way to surgery. Change rooms. Change clothes. Your surgery will be at 4pm. All the prep done. Family whisked to the waiting room and Mom & Andrew by my side to go to the surgical suite. As we say in a long hall talking to the anesthesiologist, we kept thinking “Is this really going to happen?” Then the doctor walked by holding a box labeled KIDNEY. He turned, smiled a huge smile and gave me a thumbs up and said “Here it is and it is a good kidney.” It was really going to happen.
They took me into the surgical suite and gave me some oxygen. I remember smelling something, then waking up in recovery. The surgery that was to take 3-5 hours, took about 2 hours to do. Five hours total from surgery through recovery and back to my room on the 8th floor. At 9:09pm I was back in my room with my family, Jami had arrived from San Luis Obispo and Grace (my new kidney) was already performing like a champ.
As God would have it planned, Jami’s friend lives in an apartment on campus at UCLA that is across the street from my hospital room. She was able to crash there for a couple of days before heading back up to school to prepare for finals. She took great care of me and I loved having her by my side. The roommates of the apartments sent over a purple kidney shaped pillow we named Bean. It was the perfect gift and helped keep my hand from swelling as she propped it each night during my IV treatments.
Each day in the hospital Grace grew stronger and worked like a rock star. My labs were good and improving each time. No complications. It was a great match. A match that only God could have created. A match that God created out of tragedy, facilitated in love and made it clear that He alone was in control.
Monday I took three walks, was on a liquid diet of jello, broth and popsicles. Tuesday I took five walks and graduated to real food. Parades of doctors, nurses, care partners, friends and family visited the room regularly at all hours of the day and night and we all sat in awe of what God was doing and had done. I told the story of Grace to every one of them. My niece, Taylor, made a sign that was hanging in my room: He only is my rock and my salvation,
my fortress; I shall not be shaken. Psalm 62:6 Everyone read it. Many of them talked about it.
After tasting potatoes, guacamole, tomatoes (yes, I ordered a small salad and only ate the tomatoes) again for the first time in about three years it was becoming clear that this had really happened. My life was new.
Wednesday the doctors hinted that I may be able to go home on Thursday because the numbers were good. I got permission to walk off the floor alone and go to Starbucks, but I never got the chance. Mason (my son) had come to visit and our time was much better spent just hanging out and enjoying each other’s company as we talked about life, love, and the future. Those are precious moments when our children are grown and on their own.
Thursday we were ready to head home. I was armed with a tray of pumpkin brownies brought by Sarah and I used them to barter my freedom! Every nurse, aide, care partner, coordinator, transplant team member, cleaning lady, food service person, doctor, friend or family was offered a pumpkin brownie in trade for a step closer to home. Pretty soon people started showing up saying, is this where the brownies are? Yes. Yes it is! I got to have all the tubes, drains, and contraptions removed and they even let me take a shower!!! After the shower I danced in the hall. On a floor full of transplant and trauma patients, I don’t think the nurses were used to seeing that. I couldn’t help myself.
Angela, the in hospital coordinator, came and met with us to give us instructions for the care and feeding of Grace. She told us about the fact that Grace was a great match for me. I have strong antibodies and Grace partnered with them well. There is a virus that 80% of the population has, but I don’t. Neither did Grace. Angela was amazed and so were we. Had either one of us had it, I would have had to take additional medication.
After Angela left, the pharmacy delivered a grocery bag of medications. We had expected a massive bill for the large bag of meds, but it was just over $100. The meds I needed were all available in generic form and the cost would be controlled. Not what we were expecting, but a huge blessing.
The transplant team came by one last time. The social worker, dietician, coordinators, nurse practitioner, doctor, fellow, students and others that were part of the parade wished me well and set me free to go home.
At around 3pm I walked out of the hospital on my own, fully equipped and informed about what the next few months will hold. On the way out we passed the rounding doctor that I had seen twice a day each day. He would show up at 6am each morning and drop by again in the afternoon just to check in. As we passed him in the hall I told him he was too late. I was going home. He laughed and I thanked him. He was great. So kind. So encouraging. So happy to see me go.
It took us three hours to get home. No one really cared. Traffic is traffic. I had a new kidney.
So here is what the next few months hold: For the first month I will be home. I can have visitors, but no visitors who have sore throats, sniffly noses, flus, infections, etc. All visitors are asked to wash their hands and use hand sanitizers as they enter. I am on a pile of drugs that are both suppressing my immune system to prevent rejection of Grace and a list of anti-everything else to make sure I stay healthy. I can not be in public, in close spaces with many people, around children, birds or airborne dirt. I still have dietary restrictions, but they are so much better than what I have been living with for the last three years! No grapefruit, pomegranate, star fruit, pomelo, bitter orange, orange marmalade, raw fish, green tea, processed lunch meats, raw sprouts, unpasteurized soft cheese, raw milk or cheese. I can live with ALL of that!!
For one month I will be at UCLA 2-3 times a week at 6am to have labs drawn and adjust medications. This was awesome news since they had told us in our initial orientation that it would be daily! After the first month I will have a little more freedom to be outside (perhaps with a mask) and will go to UCLA only once a week. Then, in the third month I will hopefully be able to go into public mask free and will go to UCLA every other week. If all goes well, after three months I will be back in the classroom with my students!
Thank you to this non-exhaustive list of people who have been on this incredible journey:
The entire Heim family
My family. All of them.
Every person who got tested to be a possible donor either at St. Joseph’s or at UCLA
Dr. Kaupke, his partners and his staff
Dr. Nugent and her staff
Dr. Sterling and his staff
St. Joseph’s Hospital Dialysis Unit (These people are amazing!)
St. Joseph’s Transplant Center
UCLA Kidney Transplant Center
UCLA Ronald Reagan Medical Center Transplant Surgical Team, Transplant Team, Doctors, Nurses, Care Partners, Food Service Workers, Cleaning Staff, and the darling woman in Admissions that walked us to my room when we arrived.
Each person at Rutabegorz who fed me so well for so long with all my crazy diet modifications!
Thank you to every person at or affiliated with the following places/organizations that prayed unceasingly since we started down this road:
Orange Lutheran High School
St. John’s Lutheran Church
Operation Christmas Child (California, Boone, NC, Africa and all over the world!)
Private Fitness
Thank you to my loving friends, neighbors, family and most of all to my Lord and Savior Jesus Christ who has made us understand the power of an undeserved gift of life through His death and resurrection and now through Grace.
Grace. She's Amazing. 