Onan ordinary Wednesday morning, during one of her three-times-weekly dialysistreatments, which she calls her “dates with needles,” Janet Long’s doctor saidsomething she has not heard him say during the six years she has been living ondialysis waiting for the kidney transplant thatwill return her to independence: “My guess is that this is going to happen thissummer. I think you’ll get your transplant.”
Janet Long spends another day on dialysis waiting for the transplant that will restore her independence.
AsDr. Raul Hernandez moved to the next patient in the next reclining chair andthe next set of vital signs on the screen above the machine with blood-filledtubes and a hemodialyzer, Melissa Miller, a registered nurse at the dialysiscenter, checked Long’s blood pressure reading.She tells her she has heard Dr. Hernandez give only twoother predictions about transplantation to patients, both of whom weresuccessfully transplanted within weeks.
“Hewould know,” said Miller. “I don’t know how he does it. He just seems to know.”
Longsaid she was taken aback for a moment.
“I’mtrying not to get my hopes up, but that’s exciting,” said Long. “He does justcall it. I was here when he told the one he would get transplanted soon andthen he did. They called him at three in the morning, and that was it. He’snever said that to me before so he must know something. I could get my lifeback.”
Longsaid looking ahead to her day of independence from dialysis with a transplantedkidney feels “like a prisoner just being released from a sentence.”
“Ihaven’t been a part of the real world. I’ll be starting over,” said Long. “I’vebeen working as much as being on dialysis allows, part time, but I’ll have toreaccustom myself to nine to five and changing my schedule around to makesure my kids are taken care of. My priorities have changed while I’ve been aprisoner to dialysis. I’ll have a life again. You don’t go more than four dayswithout 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 amhere three days a week for four and half hours.”
Ondialysis since December. 10, 2004, when she was diagnosed with kidney failure, Long isn’t certain of the cause. It waslikely either from frequent strep infections the busy human resourceprofessional said she was slow to treat or chronic hypertension.
“Ithought 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 Icouldn’t keep anything down and at about 1:30 in the morning, I found out. Theyinserted a temporary catheter and dialysis started immediately. I knew nothingabout dialysis. None of my family had problems. It was an awakening.Fortunately, Dr. Hernandez was very open and explained everything veryhonestly. He didn’t hold anything back. That man saved my life. He’s one of thereasons I’m here. He’s a wonderful doctor. I’ll be with him for the rest of mylife, even after transplant. He has fought for me and fought for me. If youdon’t do what he tells you, you are cut loose and I understand that and Irespect that. He’s made me fight for myself, for a transplant and to get mylife back. When he walked in that first time to see me, he got a little chokedup 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 whatI am up against. I feel very privileged to be one of his patients.”
Oncereleased from the hospital, Long looked for information on the Internet.
“Iscared myself simple,” she said. “I don’t think you can fully understand unlessyou 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 brutalit was going to be. I wasn’t used to sitting around for a long time and I don’twatch a lot of TV but that’s pretty much all you can do. I don’t sleep wellhere. Some people can, but not me. I have a full, busy life waiting for me to getout of here and live, so I get anxious. They tell you that you might have todeal with depression, but I don’t get depressed much. I have a little breakdownabout once every six months and have to get angry and cry it out and then Imove forward. It turns your whole life around. The waiting and the uncertaintyis really hard.”
Longis far from being alone. Nationally, according to the NationalKidney Foundation, the waiting list for kidney transplants hit 100,000for the first time in 2009. To put that number in perspective, it would be asif the entire population of Green Bay, Wisconsin, were in need of a kidneytransplant. 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 acomprehensive initiative that aims to end the wait list over the next 10 years.Encouraging donor registries, increasing both living donations and deceasedones and eliminating barriers are part of the mission of End the Wait, whichhas been endorsed by the United Network for OrganSharing.
Longmeets the criteria to be put on the waiting list for a donated kidney, joiningmore than 11,000 in her home state of Ohio. She understands having an O+ blood type often means a longer wait on the list, sincecandidates with an O blood type can only receivean O type donation. Because type O’s are universal donors, it is less typespecific for those in need of donated organs and tissues.
Morepositively, though, advances in organ procurement techniques are making livingdonation a more viable option and recipient survival rates have improvedsignificantly. The National Kidney Foundation reports97.96 percent of transplant recipients from living donors survive one yearafter transplant and from cadaveric donors, 94.4 percent.
Livingdonors now undergo a simpler surgery than before with laparoscopic nephrectomy. In this procedure, a laparoscope is inserted intothe abdomen allowing the surgeon to see and operate, making severalsmall incisions in the abdomen, called "ports," to allowinsertion of a laparoscope and other instruments. The camera and instrumentsare used to cut the kidney away from surrounding tissue after clamping off thearteries and ureter. The kidney is removed through an incision below the bellybutton.
Hernandezsaid the recovery time from this surgery is much shorter, with fewer long-termcomplications for the living donors.
“Thesurgery for donating is much simpler now because they do it laparoscopic,” saidHernandez. “They’re back to work sometimes in three to five days.”
Hernandezsaid the quality of life for transplanted patients is vastly improved when theycan be freed from dialysis.
“Ihave over a hundred transplant patients,” he said. “I’ve got as many transplantpatients as anywhere in the state. I’d rather transplant them all. I’d preferthat to coming in to a dialysis center. This is the part of my job I don’tlike.”
MelissaMiller comes into work every day at the dialysis center as a registered nurseon the front line for both the patients waiting for transplant and for thosewho don’t meet the criteria, who will live out their lives on dialysis.
“Ofcourse I wish they could all be transplanted, too, but I’m here for them,” saidMiller, who added that switching gears between patients and maintainingprofessional boundaries is often hard. “I was drawn to working here becauseI’ve had problems with my kidneys in the past. I didn’t have problems to theextent that these patients do, but I think my experience gave me a betterunderstanding of what they go through. I’m happy here, but sometimes it’s hardnot to take your work with you when you go home. You really get to know yourpatients 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 andyou’re happy when they are one of the lucky ones who get transplanted and theyget their life back. At the same time, you miss them when they don’t have to behere 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 directionwith each patient on a day to day basis. You get attached and it would beeasier to just be technically focused, you know, put them on treatment, takethem off treatment and watch their numbers. It’s hard to separate yourself fromthe work and you take it to heart. That’s what it’s all about, though, intaking a holistic approach to nursing, you have to take the whole person intoconsideration and you have to be able to get in touch with who they are andcare about them all as if they were family. It becomes a way of life. I got alittle teary hearing what Dr. Hernandez told Janet this morning. I want thisfor her so much, even though I’ll miss taking care of her and being with her.”
Nowhaving helped her father to the other side of dependence on dialysis, RachelYoung had watched as her father’s health and options while living on dialysisdwindled.
“Atfirst he didn’t want either one of us, me or my sister, to have anything to dowith being tested,” said Young. “He was apprehensive, and when a couple otherpeople were tested and nothing came of it, he was put on the waiting list. Hewas 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 hewould get a transplant. At that point in time, I said that it didn’t matter ifhe liked the idea or not, I was going to get tested.”
Youngsaid she was free from any ties, unlike her sister who is a mother to a littlegirl.
“Isaid, let me go ahead and see if I’m a match and we would go from there,” saidYoung.
Thetesting process is exhaustive, Young explained, and took months to complete. Inthe end, she was a match for her father.
“Itwas hard not knowing if I was going to be a match,” she said. “That was harderthan the surgery itself. The team at Ohio State won’t look at doing it unlessthey think there’s an almost 100 percent chance that things are going to gowell and you’re going to recover fully. It was an emotional rollercoaster, thatnot knowing and the ups and the downs of the unknown.”
Younglearned she was a match on a Monday and the surgery was performed just fourdays later on Friday morning.
“Upuntil 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 dealwith. Once I knew, the doctors answered all my questions and really helped putme at ease. They said I would fully recover and I would be able to lead anormal life. Other than only being able to take Tylenol for pain becauseibuprofen and a lot of the other drugs are hard on your kidneys, there weren’ta lot of stipulations. The surgery went really well. I woke up and wascomfortable and very aware of my surroundings. I got back on my feet reallyquickly.”
Oneof the first things Young did was to go down the hall and see how her dad wasdoing.
“Itwas amazing how quickly I recovered,” she said. “I had pain but it wasmanageable. I was there when my dad came out of surgery and I was able to seehim. It was great. He was doing really well.”
Youngwas discharged from the hospital on the Sunday of that same weekend, and herrecovery was uneventful.
“Thereis an initial shock as the remaining kidney and your liver adjust to the onekidney being gone, but overall, I felt pretty good,” she said. “I took my timerecovering at home and did a lot of sleeping. I was off of pain medication inthat first week and able to drive after two weeks.”
Youngsaid she and her father had a close relationship before, but the surgerybrought them even closer.
“Wewere close to begin with, but now he makes sure to thank me every time he talksto me, every time he emails me or calls me,” she said. “At first I think he hadsome guilt about having me do this. It wasn’t up to him, though. He had nochoice in what I was going to do. I was going to do it and that was it. It wasdefinitely hard for him.”
Youngsaid her father is doing well now.
“He’sdoing great,” she explained. “His levels are mostly back to normal. They are alittle high, but for his condition, they are where they need to be. They arereally happy with his recovery. He’s golfing now, he’s doing all his own yardwork and he’s working full time again. He bounced back and he looks ten yearsyounger. He looks and acts totally brand new.”
Uncomfortablebeing labeled as a hero for her decision to donate her kidney, Young said sheis happy to talk to anyone considering living donation.
“Mydad and I joke that now he owes me for life, but that’s not really how I seeit. It was the only choice I could make,” she said. “We had a lot of talksabout this and he said that he would have done the same in my situation. I hopemy story can educate people and encourage organ donation,either way, living or not. Many people talk about the guilt associated withneeding an organ that would come from someone who had passed on. So many thatI’ve talked to through the donor network have said that it gave meaning totheir loved one’s passing, that something good came out of it. That’s somethingthat’s hard to understand, especially if you are the one that is needing thatgift of life and you aren’t used to having to ask for anything. If you aren’tcomfortable checking the box on your driver’s license, then do talk to yourfamily because ultimately it comes down to something happening to you; theywill have to know and make that decision. It’s a great thing. For me, I don’tthink anything of that whole hero thing; I just know that it is something thatso many people would do in the same situation. It’s just something that you cando for someone that you care about and there’s a real need.”
WhileJanet Long waits for her day of independence from dialysis, she keeps the donorbox on her license checked.
“Imade that decision a year before I found out what was going on with me,” saidLong. “I don’t know why I hadn’t done it before, but I just decided that ifsomething 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 ifsomething happens to me, I’ll want that. I don’t know what made me change mymind, but I chose to check that box and I won’t uncheck it. I can only imaginewhat it feels like to receive an organ or how somebody feels when one isoffered, but just the idea that somebody would want to do that, to make that giftis overwhelming. The idea that there is something like that for me and thatsomeone will make that gift and give me my life and my independence back haschanged me. I know I’ll get there. You just can’t give up.”