On July 1, 2009 I donated my left kidney to my mother. My mother had suffered from poor kidney function for most of her life. When she was about 9 years old, she suffered from a silent bout of strep throat and rheumatic fever. Undiagnosed, this silent disease scarred my mother’s kidneys and left her with about 50% normal function. Although her kidney function continued to slowly decline, she was able to live a normal life, including giving birth and raising three children. It was during the beginning of 2007 that we learned that her kidney function had significantly declined in the previous few years, and that soon we would need to consider either dialysis or a transplant. Unfortunately, my family wasn’t prepared for this. While we knew that my mother had less then normal kidney function, we didn’t realize that a time would come where her health would decline so extremely. We didn’t have any time to think, her health began to rapidly decline and we began a frantic search for a donor. My brothers and I were convinced that we needed to find a donor immediately. My mother was nervous about the idea of one of her children being subjected to an invasive surgery and in particular that if I was to donate, that a complication might mean the end of my singing career. Both of my brothers and a few of my aunts were tested, but we were unable to find a perfect match. Worried about my mother, I decided that it was important for me to find out if I was a match. When it was determined that I was a match, I began to prepare myself for the surgery. I wanted to know what I could expect for my recovery, and what I could do to help my body heal. At first, it was difficult to find the answers to the questions that I had, but eventually I was able to find many resources that were extremely helpful to me. While the donation experience is far from easy, I have found it to be one of the most rewarding experiences of my life. Not only has my donation radically changed the life of my mother, whom I love dearly, but it has made me a much stronger person. I dedicate this page to my mother and to all living donors. I hope that the resources here will be helpful to those who are considering donation.
My Questions about Donation and Their Answers
Who can donate?
It used to be that you had to be a blood relative of the recipient, but now anyone with a matching blood type and tissue type, who is in good health, and who passes the screening process, can be a donor.
What is the screening process like to determine if I can be a donor?
The screening process includes a few stages. The first is to determine if you are a blood type match and tissue match with the recipient. If you are found to be a potential match, then you will go through a series of medical tests to decide if you are healthy enough to donate. You will work with a team of doctors, nurses, social works, and psychologists to determine if you are strong enough both physically and emotionally to donate. There are a number of outpatient tests which must be completed: a psychiatric evaluation; complete medical history and physical examination; chest x-ray to check your lungs; EKG to check your heart; blood and urine testing; CT scan of the kidneys; surgeon consult; and a final crossmatch to verify the compatibility of the donor and recipient. If all of these tests go well, you will be allowed to donate.
What if I’m not the right blood type for my recipient?
If you are not the right blood type for your recipient, that does not mean that you can not donate. Many people have a difficult time finding a perfect match. The transplant nurse coordinator can help put you and your recipient into the kidney exchange program. They will put you into the database for a kidney swap. These databases work a lot like online dating, where they match potential donors and recipients. If you’re not a match for your recipient, they can help find a donor-recipient pair that matches and you can arrange for a “swap”. In this way, the donor of one recipient will give to the recipient of the other donor, who will in return give to the other recipient.
What risks are there in the screening process for being a donor?
Because the screening process is so thorough, some people might discover a previously undiagnosed disease. While this can be a little frightening, it can also be of great importance to the donor. Aside from this, there is no real risk associated with the screening process.
What if I decide that I no longer want to be a donor?
Donors can opt out of the donation process at any time, including up to the surgery, without incurring any type of penalty. It is better to opt out if you are not comfortable with the choice of donation, rather then regret the experience.
What are the risks associated with kidney donation surgery?
While the risks for donor surgery are low, the fact is that this is surgery, and all surgeries have risks. Most of the risks associated with kidney donation are the standard risks associated with any surgery: pain, infection, hernia, and blood clots. You should speak with your doctor about the risks. It is also an incredibly emotional process, and things can happen against our expectations. For me,
What is the surgery like?
I had a laparoscopic nephrectomy, which means that I had a minimally invasive surgical procedure to remove my kidney. This is the most common procedure now for kidney donation surgery, although there are many different techniques for this particular procedure. The most common variable is where the incisions are made. For my procedure, my surgeon made two small incisions, each about 1 inch long on the lower left side of my abdomen. These incisions are where he passed both a camera and tools through. A larger third incision, about 2 1/2 inches long, was made in the center of my abdomen, just above my belly button. Through this incision, he was able to access the kidney with his hand and remove the organ. In all, the surgery only took about an hour and a half. You’re asleep the whole time and wake up in recovery. If there are any complications, the surgeon may have to convert to an open procedure, with a much larger incision to remove the kidney. This happens rarely, but it’s important to realize that it’s a possibility, as an open procedure will take much longer to heal then the laparoscopic.
What is the initial recovery like?
The initial recovery is tough. You’re used to feeling pretty good, and suddenly you’re weak and sore. The worst part for me was they pump your abdomen with gas to expand it for the surgery, and it takes a while for that swelling to go down. Your body has temporary stopped functioning normally, and until it begins to work like normal again, there’s a few days of discomfort. The most uncomfortable part for me was the bloating from the surgery and the residual gas left in my abdomen. You won’t want to walk, but the quicker you get up and more you move around, the quicker you’ll feel like your self again. I had a wonderful nurse and boyfriend who worked together to get me up and walking much more then I wanted to at first, but after a bit I was really thankful they pushed me like they did. It really helped me feel much better quicker then I would have thought. I was in the hospital for three days, and stayed nearby through my one week follow-up. After about one week the pain had substantially decreased, and I was able to do most things, except lifting heavy objects, which you need to avoid for a few months following the surgery.
What is the long-term recovery like?
It took a few months for my energy to return to normal. I found that naps in the afternoon were a great thing then. What I did not expect was that I got a little “out-of-whack” emotionally. The process had effected me more strongly then I had realized, so I went to a councilor for some support. Within a year I was feeling back to my old self.
How does having one kidney impact the donor? Will they be more likely to have certain ailments because of it?
Being a donor does not increase the risk of kidney disease or other kidney-related diseases. The remaining kidney grows in size to support the body in place of the kidney that was taken. This means that the body is able to continue to function normally. Many people are born with only one working kidney, and like donors, are able to live normal healthy lives.
Who pays for my expenses?
All of the donor’s hospital fees are paid for by the recipient’s health insurance. One issue that many people face however, is an impact on their income when they donate. The donor must be aware that there may be no way to make up for lost wages. Other expenses, such as commuting for testing and the surgery, or accommodations near the hospital, if the donor is coming from a distance, may be paid by the donor. It is however, illegal for the donor to receive compensation for the donation itself. When I donated, I was a resident of New York City and my mother lived in Boston. The surgery took place at Beth Israel Deaconess Medical Center in Boston. For me, there were additional expenses of commuting to and from NYC to Boston for the preliminary testing, surgery and followup. Being a musician, I was able to arrange my schedule so that I would have a 1 1/2 months to have the surgery and recover before I would have to return to singing. While this did not effect my career, it did create a loss of income and some financial hardship. My transplant coordinator and the finical office at BIDMC helped me to apply for a hardship grant from the National Living Donor Assistance Center. This grant helped me to pay for my transportation to and from Boston, along with accommodation and substance for myself and my boyfriend to accompany for support.
What are the benefits for the recipient in kidney donation?
The benefits for the recipient are incredible! For my mother, she immediately had a huge increase of energy. She felt better then she had in well over 10 years. Now she is healthier then she’s been my entire life. She no longer needs dialysis, and can do just about anything she wants. She’s been given a fresh start on life. It’s amazing!!!
What are the benefits for live donation over deceased donation?
Live donation has a much better track record then deceased donation. It is much more likely that the recipient will accept a live donation that has been thoroughly screened, then a deceased donation. It is also likely that the kidney will last for much longer, as the average deceased donation lasts a much longer time. According to the Living Kidney Donors Network, a woman of my mother’s age, 55-59 can expect to live about 5 years on dialysis and up to 13 years with a deceased donor kidney; with my kidney, through living donation, we can expect at least 18 years, and upwards of 20, 25, and even possibly 30 or 40 years!!!! My donation to my mother might get me an extra 20+ years with her!!! The benefit is not only great to her, but to my entire family!!!
How does kidney donation effect your career as a singer?
I received a lot of concern from many people in my support network when I decided to donate. My mother, my teachers, my friends, and just about everyone else was afraid that it could negatively impact my ability to sing. We were afraid that the incision would cut open valuable muscle tissue, and that there could be bruising to my vocal chords from the intubation tube. I spoke with my surgeon, transplant coordinator, and anesthesiologist about my concerns, and they made every precaution to protect my instrument. The main incision did not actually cut through any muscle, but was made in the very center of my abdomen, just above my navel, where muscles join together, but were there is no muscle to cut through. There was still the possibility that another incision might need to be made, if in an emergency situation in the operating room the surgeons needed to revert to an open procedure. The fact that the likelihood of this type of situation happening was so low, I didn’t feel like that was an issue that I needed to worry about pre-surgery. In regards to the intubation process, my voice teacher recommended that I ask for a smaller intubation tube (there are multiple sizes), which the anesthesiologist agreed to. He also explained that most injuries that are caused by intubation happen in the field, or in times of crisis, where there is swelling and other influences that make intubation very difficult. Since this was a controlled situation, there were things that they could and would do to make the intubation process as easy as possible, leaving no chance of injury. Most of my concerns were related to the surgery itself, but I was also unsure of how long I would have to take off from singing. Being a free-lance musician, every day that you are unable to perform means another day where you will not be able to make money to support yourself. I had agreed to sing for a church job, very low key, about 2 or 3 weeks after my surgery. I was still in the recovery phase, and very tired, and was still feeling a bit of pain. I was able to prepare music that wasn’t especially challenging in breath control or range, and was able to perform for this event. It felt good and reassuring to be able to begin to get back in the swing of things, but it took a few more weeks before I was comfortable with long phrases and high notes again. Now, I feel like the experience has brought with it a new connection with my body and creativity. I feel like I am able to connect with things in a deeper way then before, and that I have grown greatly as an artist. I can’t say that everyone’s experience will be like mine, but it was incredibly valuable for me both personally and professionally.