What’s it like to be a Living Donor? It’s now easier than ever with minimally invasive, laparoscopic procedures available! Josh is in need of a new kidney now. Read on to see how you might be able to help!
WDW Hints: Carolyn, being a “Living Donor” seems a bit daunting, but many people don’t realize how easy it actually can be. Can you tell us about the transplant from your experience as the donor? How long were you in surgery for? Where was the incision made? How long (or short) was your recovery? People seem to believe if they were created with 2 kidneys, they must need both… can you educate us on how people can actually survive just fine with only one?
Carolyn: From the moment I was found to be a match for Josh, I never had one second thought about donating my kidney. He needed it to live and I didn’t need the second one, so of COURSE I wanted to donate. Donation then was much different than it is now. The process is the same; the surgery is totally different. I had never had a surgery before, so Josh was my cheerleader every step of the way. The process started with blood work to determine compatibility. Since everyone gets three factors from their father and three from their mother, I was afraid that I wouldn’t be a close enough match. But I was. I matched Josh in 5 out of 6 factors, which was amazing! We could have waited to see if there was a 6/6 match, but why? I had an available kidney and I wanted him to get better. So after the blood work, there was paperwork (isn’t there ALWAYS paperwork??) and some informational sessions about what would happen during and after surgery. There was a brief psychological evaluation to make sure that I was donating for the right reasons. Of COURSE I was! My son needed a kidney—I can live with one. No question at all I was doing it for the right reason! But they have to ask the questions if the donor has been promised anything (money, status, whatever). Josh had to have his original kidney removed and once he recovered from that, our date was set.
September 17, 2003 will be burned in my brain forever. As the time got closer, I found a sense of peace and determination that this was exactly where we needed to be. We had an open house the night before and invited friends, family, neighbors and our parish priest. He blessed Josh and me before the surgery. The morning of the surgery we were driving by our local park, and it had been raining so hard. All of a sudden it stopped raining and there was this huge, beautiful, vibrant rainbow right in front of us. We took that as our sign that not only was this right, but that things were going to be absolutely fine. We went to our local Shrine (Shrine of the Lady of the Snows in Belleville, IL) to say some prayers for the doctors and nurses, and for a successful surgery.
It was really hard the morning of the surgery. I had stayed in Joshua’s hospital room the night before, trying to be as normal as possible. We played Uno, we watched TV, but we didn’t talk much about the following day that was going to be pretty scary for me. On the morning of the surgery I walked next door. Lewanna was with me and my mom stayed with Josh in his hospital. I remember being very anxious to just get into surgery. And then it was time. I remember being very very cold in the OR and then counting back from 100. I didn’t get very far! They made an incision about 6 inches long on my left side and removed that kidney. They try to use the left one because it is traditionally a little bigger than the right one and it has longer tubes connecting to the bladder. So it gives them more to work with. Next thing I knew I was waking up in my hospital room. I don’t remember feeling bad at all. I just wanted to sit up. So they helped me into a chair so I could be up for a few minutes. I don’t remember much about my hospital stay, except that Lewanna helped keep me connected to Josh through videos. I just knew I wanted to get home. I was in the hospital about 5 days and then came home. I recovered pretty well. It took about 6 weeks before I was feeling “normal.” I have never had any negative effects from the surgery. I don’t even notice I only have one kidney. Literally nothing has changed for me.
Now some of that may sound scary, but it’s all different now! Shortly after my donation, they began doing laparoscopic surgery to remove the donated kidney!!!! The incision is very small—VERY small! And the hospital stay is about 2 days or so. Another few weeks of recovery at home and you’re good to go!!! I feel a little ripped-off by that! I wish I could have done it that way, but not to be. So it’s much easier for today’s donors to be that miracle for someone!!!
WDW Hints: Can you tell us more benefits to Living Kidney Donation?
Josh: Well, it was a HUGE benefit for me of course. The first benefit is that I didn’t have to wait on the list, with a beeper, wondering if/when that kidney would come. All I had to do was wait for them to schedule my surgery. There was no guessing and no fear that a match wouldn’t be found. There are also statistics that show that kidneys from living donors last longer and are healthier than those of cadaver kidneys. So I was happy I was getting a kidney from a living donor. I look at it like my mom gave me life twice. First when I was born and then when I woke up and had a kidney that worked. Do you know that they carried her kidney in a BEER COOLER through a tunnel connecting our hospitals before putting it in me??? I always thought that was hilarious. But seriously, the best part of having a living donor is that you KNOW when and where you’re getting a kidney. You can plan it. You’re not sleeping and a pager goes off giving you a very short time to get to the hospital because cadaver kidneys are only offered for a short amount of time. If you can’t get there in time, they offer it to the next person on the list. That is really hard to think about—that you could actually MISS your kidney! Mom’s was right here—just waiting for me!!
Carolyn: I would have to agree with Josh. The benefits to a living donor are that everything can be planned to make it convenient for everyone. Also, as the living donor has been interviewed, the doctors/nurses can determine lifestyle consistencies and get information about how that person has lived prior to donation. With a cadaver kidney, the family may know some information about their loved one that is donating, but they may not know if that person had risky behaviors (Like drug use, etc.) The process is just easier with a living donor. There’s no waiting and wondering when you will get the call to rush to the hospital.
WDW Hints: What is the process to specifically help Josh?
Carolyn: The process to help Josh and be his miracle starts with a call to his transplant coordinator. Although we are in the St. Louis area, at Barnes Hospital, the donor could literally be from anywhere. The hospital coordinates with the person to have testing done in their area. The first step is the phone call stating that the person wants to be tested. A packet of paperwork is sent out for the potential donor to fill out and then they return it to the hospital. The coordinator then schedules blood tests in the donor’s area. Some of the things that make a good candidate include being a healthy person without a disease process (diabetes, cancer, etc). Josh has A+ blood type, but that doesn’t rule out other blood types. A good candidate needs to have a normal blood pressure and have no addiction issues. Once all the preliminary things are out of the way, they start the brief psychological. The awesome thing is—it doesn’t cost the donor ANYTHING to do the preliminary work, the transplant itself, or the hospital stay after. Our insurance covers all that. And now that it is done laparoscopically, the recovery time is much shorter.
There is also a program of cross matching. This is when someone has an identified person they want to be a donor for, like Josh. But for whatever reason, they are not a match. BUT maybe there is someone in a different location that ALSO needs a kidney and they ARE a match for that person. The hospital can coordinate with the other hospital to trade kidneys between the two. So two people who need kidneys, but don’t have their own matches, could use matches for their partner at a different hospital. Everybody wins! Our hospital said the longest chain of cross matching that they’ve personally done was among 13 hospitals for 13 patients in one day. People who were willing to be a donor for their friend, ended up being a donor for someone far away, but their friend received the benefit of the kidney from yet another person in a different location. That’s true altruism at work!
I’m biased, but Joshua is a great kid. He has been an ambassador for Children’s Miracle Network of St. Louis for the past 8 years. He has helped raise money for the two children’s hospitals in St. Louis because he believes in their work and what they do for children. He is a motivational public speaker. He has been a peer educator for MidAmerica Transplant Services, helping to educate kids his age about organ and tissue donation. Prior to his last health crisis, he was a teacher’s aid at a school for children with mental, physical and developmental disabilities. He loved his kids and loved his work with them. He misses them and just wants to go back to work. He has a unique perspective about what they are going through because he has been in hospitals since he was born. He has met hundreds of kids with a variety of abilities. He connects with them and they trust him. He just wants to resume his normal life.
Josh needs a miracle. Josh needs a kidney. Are you his miracle??
Start the Process to see if you’re a match…
The process begins with a quick, informational phone call to (314) 362-5365 option 4 or (800) 633-9906 option 4, then an informational packet is mailed to you. Please seriously consider being a donor for Josh (or the many others waiting for a kidney) and pass this information along to anyone who may also be interested in becoming a living donor!
Miss an earlier article about Josh? Read the full series here:
- Part 1 – The Diagnosis
- Part 2 – Josh’s Childhood with Kidney Disease
- Part 3 – The Transplant
- Part 4 – Transplant Success
- Part 5 – New Kidney Needed (you are here)
- Part 6… When a Living Donor is found, we hope to update you right here!
- You can also visit LetsHelpJosh.com for more info and follow along on Facebook!