As a follow-up to our post yesterday about the wonderful report by Megyn Kelly about the 46-person chain, I want to share with you below some news I just received about the recipient of my donation. This is not a feel-good story, it is the way life happens sometimes; I prefer to think of it as a work-in-process.
Posted on our Facebook page June, 2018:
By way of background, I donated to start a chain in September, 2015. I later learned that my recipient, Danielle, is the mother of three young children with an immune system that made her a very difficult match. I remember that my coordinator at NYPH Weill Cornell was elated to tell me that Danielle had found a match. When I was going through the psychological test portion of the vetting process, I remember the psychiatrist asking me how I would feel if my kidney was rejected by my recipient. I thought about it for a moment and decided, because I was starting a chain and therefore partially responsible for multiple transplants, that I would be sad but I would take consolation in the knowledge that my action resulted in multiple transplants.
My donated kidney flew to Colorado and immediately changed Danielle’s life. Her energy returned and her life was great. She participated with me on a Freakonomics podcast in February, 2016, where I spoke with her for the first time. That was a powerful experience. But then, several months later, I learned that Danielle had a very rare disease that was not identified at the time of her transplant. Her (my) kidney was starting to fail. The medical team did everything they could, but the kidney stopped working. Danielle went onto dialysis in 2017, and the joy and hope she had experienced with her new kidney was replaced by the grim reality of life on dialysis.
My disappointment and sadness for Danielle has been intense, but at least I had the consolation noted above. But I learned yesterday of another development. The non-functioning kidney in Danielle had become infected and inflamed in some fashion, and she had to have an emergency operation yesterday to remove it. I texted with her today; she is in quite a lot of pain although, as she says, she is as tough as woodpecker lips. As I am processing this information I realize how upsetting this is to me personally, perhaps beyond rational measure. I so want her to get her life back with her family.
Donor to Donor has been working to find a donor for Danielle, either through a paired exchange or by means of a voucher from a donor who starts a chain. It’s a bit complicated if you are not familiar with the process, but that is why we are here and doing what we are doing. If you would like to know more about different ways to donate, please contact us or look through our website at http://www.donortodonor.com/ . You may see Danielle’s Facebook page here: https://www.facebook.com/Kidney-for-Danielle-1089419757751485/ As I said, this is a work-in-process.
- Ned Brooks
A few years ago, the podcast Freakonomics asked to interview me about my kidney donation, and the podcast was aired. During the interview, they were able to reach my recipient and get her on the line, we spoke to each other for the first time after having had a series of email exchanges. - Ned Brooks
Here is the interview and below is her story.
As is evident from the podcast, it was a unique experience for me but Danielle was very composed.
My name is Danielle. I am the recipient of a kidney transplant...
below is my story.
I was 37 years old and just had my second child in September, 2014. It was a perfect pregnancy and birth. Three weeks after having him, I had a headache that wouldn't go away with Ibuprofen. I decided to go to my regular physician, where they did some blood work. The very next day the lab called me directly. It was Tuesday, October 7, 2014 at 4:30pm when I got the call. The man from the lab was quite frantic and he told be to go immediately to the emergency room. He said he was calling them to let them know I was on my way. He went on to tell me my "Creatinine" was a 12...the highest they had ever seen. I had no idea what he was talking about. I called my husband to come home early from work. I called my mom to come over as well. I wasn't looking forward to spending a couple of hours sitting in the ER. By the time my mom and I got to the hospital, 1½ hours had gone by. The people in admittance were very concerned what had taken me so long. I sat in one of the rooms as the doctors talked about my Creatinine, and explained how it should be under a 1. They went on to tell me I wasn't going home. I called my husband who was home with the kids and told him I had no idea when I was coming home.
The next few days went by really fast. The doctors placed port tubes in my chest and neck. Lots of tests were performed on me. They started blood transfusions, dialysis and plasmapheresis treatments. On Monday, October 13, 2014...just days into this...I woke up at night with trouble breathing. I woke my sister who was staying with me that night, and she called the nurses. It got worse over the next few hours, and we called my dad to come down to the hospital. Just as he arrived, they were rushing my bed to the ICU, placing a huge bipap mask over my face, pumping so much oxygen into me. I was the most scared I had ever been. My husband and mother arrived.
My husband said that when he looked at me he saw more fear in my eyes than he had ever seen in anyone. I was freaking out so badly they sedated me. The staff told my parents to be concerned because I had a lot of fluid in my lungs and I was only breathing 10% oxygen on my own. While I was under, they did another dialysis treatment to pull of all that fluid so I could breath again on my own. I was in the ICU for 3 days. I was hospitalized for a total of 15 days. The many kidney doctors I saw had no idea what was happening to my kidneys. They said it had nothing to do with the recent pregnancy and the biopsy showed no kidney diseases. I was a mystery to them all. They thought the kidneys might just "restart" themselves, so we should be patient and wait to see what happens. This was just so unreal. I was torn away from my 6 year-old and my new baby. They could come visit only for short periods of time. Their lives were turned upside down.
I finally got to go home, but to a new lifestyle. I was on all this new medication that made me chronically sick. I had to go to a dialysis center three days a week for five hours a day. I had a very strict diet to live by. I was allowed 32 oz. of liquids a day, which is very hard to do, especially when you have to take a handful of meds three times a day. I was no longer allowed to eat anything that contained potassium in it. Which just happened to be everything I love! No more potatoes, tomatoes, avocados, beans, bananas, cheese and my favorite milk. I was devastated! I had developed a lot of anxiety and I was scared to lay flat. I was so worried about putting fluid into my lungs again. I couldn't sleep well anymore. For the next 6 months I slept upright either in bed or on the couch.
My mom had to retire to become my care giver, so my husband could continue working. She practically moved in with us to help take care of my children and me. I could no longer work and was considered "disabled" by the state.
My first couple of sessions of dialysis I cried. It's a hard place to adjust to. You go in and get all your vitals checked by the techs and nurses. They openly discuss your symptoms of the day...as the next patient is less than five feet from you. It definitely took a little of my self-confidence away, as I would sit there all hooked up, watching all my blood go in and out through a machine. This machine was the only thing keeping me alive. My body was so cold from the blood going outside the body, I brought a pillow and blanket with me every time just to be comfortable. I would also take an eye mask and actually be able to sleep there. It was now the only place I could feel safe to sleep. It was hard to plan dialysis around my daughter's school and vacations. I would go either in the middle of the day or at 4:30am to try and not have it interrupt my daughter's school. I would have to find centers in other cities to try and travel and interrupt vacations with the family.
Over the next few months, I was willing to try anything to "restart" my kidneys. My husband found an acupuncture doctor who specialized in organ repair. I tried 10 weeks with him. I also tried a few Reiki sessions...but nothing was doing the job. So by January of 2015, I decided to get on the transplant list. Your spot on the transplant list starts the day when you start dialysis. I had a lot of built-up antibodies from the blood transfusion and from having children. This made me a very rare match. The doctors gave me an estimated time of six years on the list. I had many friends and family test for me, but no one was a match to me anymore. My dad tested and qualified to donate his kidney on my behalf and become part of a kidney chain, known as the "Paired Donor Program", through the hospital.
The next six months became harder and harder for me. With the failing of my kidneys, it started to affect the rest of my body. My heart started to fail; its function reduced to just 30%. Then they found a blood clot in my lungs. When summer came, I was getting severe migraines from dehydration and having to go through the dialysis process where they pulled all my fluid off me. I was in the ER every other day with pain. The medications made me so sick, I had lost a total of 75 lbs...putting me at 100 lbs. During the summer of 2015, my dad and I were a part of several chains, that unfortunately kept breaking.
It was August of 2015 when we got the call about the best match yet that had been found for me. The chain was set for September 22, 2015. I only knew that it was a healthy male kidney coming from Connecticut. My daughter, who was getting ready for her birthday soon, turned to me and said, "Mommy, all I want for my birthday is my mommy back!" I was so happy I was going to be able to give that to her.
September came and we celebrated both my children's birthdays. With my daughter turning 7 and my baby boy now 1, we celebrated the weekend before surgery. Tuesday, September 22nd finally arrived. My dad's surgery was at 5:00 am, and mine was later in the day, around 4 pm. His surgery went well, and all we knew was that his kidney was going to Hartford, CT. I waited patiently as my kidney was on a plane from NY heading to Denver. My surgery was about 5 hours long.
When I woke up the next day, I felt….amazing! I immediately ordered everything I was told I couldn't eat before. I was no longer having to take the meds I was taking that were making me sick. My dad was in and out of the hospital in three days, and I was out in five. I had all the tubes in my body removed and was able to return home. It took about six weeks of bed rest for me to recover. I now take a lot of different medication, and will have to take them the rest of my life. The doctors will continue to monitor my blood work for a while. It sure beats going to the dialysis center and losing that time with my children.
Now it's been five months since the surgery, and I am doing so much better. I can eat anything again and it's so good to drink as much water and milk as I want to. It's been a little harder of a recovery for me, just because I had to jump right back into the role of "Mom" right away, but everyday I get better. I have been in contact with my wonderful donor, Ned, via, letters, email and phone. I am so appreciative to have such a selfless donor, and to his family for understanding why he did this.
The doctors tell me that the average kidney transplant last about 10-12 years. So I know I will have to go through this again some day. Hopefully, when that day comes, I will have the same great experience finding another match!