On an ordinary Wednesday morning, during one of her three-times-weekly dialysis treatments, which she calls her “dates with needles,” Janet Long’s doctor said something she has not heard him say during the six years she has been living on dialysis waiting for the kidney transplant that will return her to independence: “My guess is that this is going to happen this summer. I think you’ll get your transplant.”

Janet Long spends another day on dialysis waiting for the transplant that will restore her independence.

As Dr. Raul Hernandez moved to the next patient in the next reclining chair and the next set of vital signs on the screen above the machine with blood-filled tubes and a hemodialyzer, Melissa Miller, a registered nurse at the dialysis center, checked Long’s blood pressure reading.  She tells her she has heard Dr. Hernandez give only two other predictions about transplantation to patients, both of whom were successfully transplanted within weeks.

“He would know,” said Miller. “I don’t know how he does it. He just seems to know.”

Long said she was taken aback for a moment.

“I’m trying not to get my hopes up, but that’s exciting,” said Long. “He does just call it. I was here when he told the one he would get transplanted soon and then he did. They called him at three in the morning, and that was it. He’s never said that to me before so he must know something. I could get my life back.”

Long said looking ahead to her day of independence from dialysis with a transplanted kidney feels “like a prisoner just being released from a sentence.”

“I haven’t been a part of the real world. I’ll be starting over,” said Long. “I’ve been working as much as being on dialysis allows, part time, but I’ll have to reaccustom myself to nine to five and changing my schedule around to make sure my kids are taken care of. My priorities have changed while I’ve been a prisoner to dialysis. I’ll have a life again. You don’t go more than four days without dialysis. It hinders a lot. You are very confined. I get no days off, no holidays. There’s no time off for good behavior. There is no break. I am here three days a week for four and half hours.”

On dialysis since December^. 10, 2004, when she was diagnosed with kidney failure, Long isn’t certain of the cause. It was likely either from frequent strep infections the busy human resource professional said she was slow to treat or chronic hypertension.

“I thought I had the flu,” said Long. “I had been sick with something -- a virus, I thought -- and I couldn’t shake it. I finally went to the hospital when I couldn’t keep anything down and at about 1:30 in the morning, I found out. They inserted a temporary catheter and dialysis started immediately. I knew nothing about dialysis. None of my family had problems. It was an awakening. Fortunately, Dr. Hernandez was very open and explained everything very honestly. He didn’t hold anything back. That man saved my life. He’s one of the reasons I’m here. He’s a wonderful doctor. I’ll be with him for the rest of my life, even after transplant. He has fought for me and fought for me. If you don’t do what he tells you, you are cut loose and I understand that and I respect that. He’s made me fight for myself, for a transplant and to get my life back. When he walked in that first time to see me, he got a little choked up telling me that I was in kidney failure so young and with my boys to raise. That’s what you need in a doctor. He understands where I am in my life and what I am up against. I feel very privileged to be one of his patients.”

Once released from the hospital, Long looked for information on the Internet.

“I scared myself simple,” she said. “I don’t think you can fully understand unless you are experiencing it as it goes. Reading about it doesn’t tell you enough. Dialysis three times a week takes your life over. I didn’t realize how brutal it was going to be. I wasn’t used to sitting around for a long time and I don’t watch a lot of TV but that’s pretty much all you can do. I don’t sleep well here. Some people can, but not me. I have a full, busy life waiting for me to get out of here and live, so I get anxious. They tell you that you might have to deal with depression, but I don’t get depressed much. I have a little breakdown about once every six months and have to get angry and cry it out and then I move forward. It turns your whole life around. The waiting and the uncertainty is really hard.”

The Waiting Game

Long is far from being alone. Nationally, according to the National Kidney Foundation, the waiting list for kidney transplants hit 100,000 for the first time in 2009. To put that number in perspective, it would be as if the entire population of Green Bay, Wisconsin, were in need of a kidney transplant. More than 4,000 are added to the waiting list each month and sadly, there will be some who die while waiting for their gift of life.

The National Kidney Foundation has launched a comprehensive initiative that aims to end the wait list over the next 10 years. Encouraging donor registries, increasing both living donations and deceased ones and eliminating barriers are part of the mission of End the Wait, which has been endorsed by the United Network for Organ Sharing.

Long meets the criteria to be put on the waiting list for a donated kidney, joining more than 11,000 in her home state of Ohio. She understands having an O+ blood type often means a longer wait on the list, since candidates with an O blood type can only receive an O type donation. Because type O’s are universal donors, it is less type specific for those in need of donated organs and tissues.

More positively, though, advances in organ procurement techniques are making living donation a more viable option and recipient survival rates have improved significantly. The National Kidney Foundation reports 97.96 percent of transplant recipients from living donors survive one year after transplant and from cadaveric donors, 94.4 percent.

Living donors now undergo a simpler surgery than before with laparoscopic nephrectomy. In this procedure, a laparoscope is inserted into the abdomen allowing the surgeon to see and operate, making several small incisions in the abdomen, called "ports," to allow insertion of a laparoscope and other instruments. The camera and instruments are used to cut the kidney away from surrounding tissue after clamping off the arteries and ureter. The kidney is removed through an incision below the belly button.

Hernandez said the recovery time from this surgery is much shorter, with fewer long-term complications for the living donors.

“The surgery for donating is much simpler now because they do it laparoscopic,” said Hernandez. “They’re back to work sometimes in three to five days.”

Hernandez said the quality of life for transplanted patients is vastly improved when they can be freed from dialysis.

“I have over a hundred transplant patients,” he said. “I’ve got as many transplant patients as anywhere in the state. I’d rather transplant them all. I’d prefer that to coming in to a dialysis center. This is the part of my job I don’t like.”

Melissa Miller comes into work every day at the dialysis center as a registered nurse on the front line for both the patients waiting for transplant and for those who don’t meet the criteria, who will live out their lives on dialysis.

“Of course I wish they could all be transplanted, too, but I’m here for them,” said Miller, who added that switching gears between patients and maintaining professional boundaries is often hard. “I was drawn to working here because I’ve had problems with my kidneys in the past. I didn’t have problems to the extent that these patients do, but I think my experience gave me a better understanding of what they go through. I’m happy here, but sometimes it’s hard not to take your work with you when you go home. You really get to know your patients in this setting. You know about their life and they know about yours. It’s a relationship. You celebrate with them when things are going well and you’re happy when they are one of the lucky ones who get transplanted and they get their life back. At the same time, you miss them when they don’t have to be here anymore. When things go wrong and they can get really bad really quickly, you have to be able to react professionally. You take an individual direction with each patient on a day to day basis. You get attached and it would be easier to just be technically focused, you know, put them on treatment, take them off treatment and watch their numbers. It’s hard to separate yourself from the work and you take it to heart. That’s what it’s all about, though, in taking a holistic approach to nursing, you have to take the whole person into consideration and you have to be able to get in touch with who they are and care about them all as if they were family. It becomes a way of life. I got a little teary hearing what Dr. Hernandez told Janet this morning. I want this for her so much, even though I’ll miss taking care of her and being with her.”

A Family Affair

Now having helped her father to the other side of dependence on dialysis, Rachel Young had watched as her father’s health and options while living on dialysis dwindled.

“At first he didn’t want either one of us, me or my sister, to have anything to do with being tested,” said Young. “He was apprehensive, and when a couple other people were tested and nothing came of it, he was put on the waiting list. He was on home dialysis five times a day and he was beginning to really get sick. He was told that it could be two or three years before it was likely that he would get a transplant. At that point in time, I said that it didn’t matter if he liked the idea or not, I was going to get tested.”

Young said she was free from any ties, unlike her sister who is a mother to a little girl.

“I said, let me go ahead and see if I’m a match and we would go from there,” said Young.

The testing process is exhaustive, Young explained, and took months to complete. In the end, she was a match for her father.

“It was hard not knowing if I was going to be a match,” she said. “That was harder than the surgery itself. The team at Ohio State won’t look at doing it unless they think there’s an almost 100 percent chance that things are going to go well and you’re going to recover fully. It was an emotional rollercoaster, that not knowing and the ups and the downs of the unknown.”

Young learned she was a match on a Monday and the surgery was performed just four days later on Friday morning.

“Up until a few days before, I wasn’t sure yet that I was a good match,” she said. “That was probably the hardest thing of everything overall that I had to deal with. Once I knew, the doctors answered all my questions and really helped put me at ease. They said I would fully recover and I would be able to lead a normal life. Other than only being able to take Tylenol for pain because ibuprofen and a lot of the other drugs are hard on your kidneys, there weren’t a lot of stipulations. The surgery went really well. I woke up and was comfortable and very aware of my surroundings. I got back on my feet really quickly.”

One of the first things Young did was to go down the hall and see how her dad was doing.

“It was amazing how quickly I recovered,” she said. “I had pain but it was manageable. I was there when my dad came out of surgery and I was able to see him. It was great. He was doing really well.”

Young was discharged from the hospital on the Sunday of that same weekend, and her recovery was uneventful.

“There is an initial shock as the remaining kidney and your liver adjust to the one kidney being gone, but overall, I felt pretty good,” she said. “I took my time recovering at home and did a lot of sleeping. I was off of pain medication in that first week and able to drive after two weeks.”

Young said she and her father had a close relationship before, but the surgery brought them even closer.

“We were close to begin with, but now he makes sure to thank me every time he talks to me, every time he emails me or calls me,” she said. “At first I think he had some guilt about having me do this. It wasn’t up to him, though. He had no choice in what I was going to do. I was going to do it and that was it. It was definitely hard for him.”

Young said her father is doing well now.

“He’s doing great,” she explained. “His levels are mostly back to normal. They are a little high, but for his condition, they are where they need to be. They are really happy with his recovery. He’s golfing now, he’s doing all his own yard work and he’s working full time again. He bounced back and he looks ten years younger. He looks and acts totally brand new.”

Uncomfortable being labeled as a hero for her decision to donate her kidney, Young said she is happy to talk to anyone considering living donation.

“My dad and I joke that now he owes me for life, but that’s not really how I see it. It was the only choice I could make,” she said. “We had a lot of talks about this and he said that he would have done the same in my situation. I hope my story can educate people and encourage organ donation, either way, living or not. Many people talk about the guilt associated with needing an organ that would come from someone who had passed on. So many that I’ve talked to through the donor network have said that it gave meaning to their loved one’s passing, that something good came out of it. That’s something that’s hard to understand, especially if you are the one that is needing that gift of life and you aren’t used to having to ask for anything. If you aren’t comfortable checking the box on your driver’s license, then do talk to your family because ultimately it comes down to something happening to you; they will have to know and make that decision. It’s a great thing. For me, I don’t think anything of that whole hero thing; I just know that it is something that so many people would do in the same situation. It’s just something that you can do for someone that you care about and there’s a real need.”

Still Waiting

While Janet Long waits for her day of independence from dialysis, she keeps the donor box on her license checked.

“I made that decision a year before I found out what was going on with me,” said Long. “I don’t know why I hadn’t done it before, but I just decided that if something was to happen to me, that someone should benefit. It’s still checked. Even now, there is still something on me that someone could use and if something happens to me, I’ll want that. I don’t know what made me change my mind, but I chose to check that box and I won’t uncheck it. I can only imagine what it feels like to receive an organ or how somebody feels when one is offered, but just the idea that somebody would want to do that, to make that gift is overwhelming. The idea that there is something like that for me and that someone will make that gift and give me my life and my independence back has changed me. I know I’ll get there. You just can’t give up.”