The Waiting List


 
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I remember the day my husband Alvin walked into my office, slumped down in the chair with tears in his eyes, and said, "The doctor says my kidneys have failed."

We were heartbroken, bewildered, and stunned. He was 38 years old. Within weeks he was in the hospital getting a permacath and fistula put in. We met with the nephrologists, the nurses, the nutritionists and then I hit the internet. I combed for information, any and all information, about kidney failure.

Dialysis keeps Alvin alive. It's really as simple as that. However, it is devastatingly difficult for the heart and the body. You have to stay on top of the research, the supplements, medications, and nutrition, or health deteriorates rapidly. IF you stay on top of it there are still scary days, but there is also life.

We've been on this path for seven years now. Two years ago Alvin was admitted to the hospital with a sore back, pneumonia and a staph infection. Then, an ulcer in Alvin's stomach perforated an artery and he almost bled to death before they could cauterize it. He recovered from that only to find that he was bleeding internally again from an unknown source. Within days Alvin began to projectile vomit blood in copious amounts, in addition to the blood jettisoning from every orifice. It was touch and go. Alvin went into surgery at 8:00 p.m. and at 2:30 a.m. he was finally wheeled back into ICU. They'd left both his stomach and abdomen open. Four days later they sewed him up. Six days after that surgery Alvin awakened, determined to recover. Two days before he was to be released, there was another set back. By this point, Alvin and I had been through so much we began to sob uncontrollably.

At the end of six weeks, Alvin was finally allowed to come home and he has healed. But, there was a weakness in him that hadn't been there before. His health is steadily failing.  He has been in the hospital five more times, just being released from the last stay on Valentines Day, February 14, 2008.

Soon, there was no more delaying the inevitable. Alvin had to have a transplant. There's hope with the transplant process, but it is one filled with ups and down. There are currently 98,000 people waiting on the transplant list. None of his siblings are allowed to donate because they have all the same health issues he does, so our possibilities were narrowed greatly. I sent the word out that Alvin needed a transplant and people responded, so many people I couldn't believe it. The generosity and loving consideration of so many was astonishing to me.  We love each of these people for being willing to give this amazing gift of life and love.

It could very easily be that none of these live donors will be compatible with Alvin. I don't know what will happen. It is my hope and my prayer that a kidney becomes available for Alvin and his life will be preserved. But the odds are against us.

Over the years, Alvin has had the best, very best, nurses. We have literally come to love many of them. We have been very, very blessed.

Paul, who took care of Alvin the first time he was admitted to ICU, and who has continued to take care of him right up until yesterday. No matter what kind of help Alvin has needed in the hospital, Paul has been there, always. We love him a lot!

Barb, another ICU nurse, brought Alvin out of his drug induced coma two years ago. She cared for Alvin as if he was her own and we came to love her so much.

George is our Hawaiian nurse. My husband is Samoan and they bonded. In some of our hardest moments, George was the only one who would listen. George has cared for Alvin on almost every one of his hospital visits.

There is such peace when I see one of these nurses walk through the door. I don't have to be hyper-diligent when they are the ones caring for my husband. You cannot imagine the comfort that brings.

Still, I have found that some nurses think family members don't know anything. The ones we’ve grown to love were the ones who listened, who understood our fears and concerns and understood that we lived every day with this disease. I know every medicine, and its side effects, being given to my husband. I know every procedure which has been done, why, and what the results were. I know what my husband can handle and what he cannot. I know his diet inside and out. I know every aspect of his kidney disease and the manifestations of it at home. When a nurse walks into Alvin's room and treats us as if we wouldn't know. . . that adds tremendous pressure to an already stressful and dangerous situation.

The biggest piece of advice I can give to all nurses is to listen and to really care. Oh, the loyalty you will gain from the patients and their families will be tremendous. These nurses are forever a part of our lives.  A good nurse is an angel to those of us stressed beyond belief about the conditions of our loved ones. A good nurse is someone who cares . . . really, really cares. And if you care, you pay attention. And if you pay attention, you make a difference. And if you make a difference, you save a life.

 

Copyright 2008- American Society of Registered Nurses (ASRN.ORG)-All Rights Reserved



 
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Articles in this issue:

Masthead

  • Masthead

    Editor-in Chief:
    Alison Palmer

    Editorial Staff:
    Alison Palmer
    Laura Fitzgerald
    Kimberly McNabb
    Lisa Gordon
    Stephanie Robinson

    Creative Oversight:

    Design Director:
    Daria Dillard

    Design Firm:
    Agency San Francisco
    San Francisco, California

    Contributors:
    Alison Palmer
    Laura Fitzgerald
    Cris Lobato
    Elisa Howard
    Susan Cramer

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