As told to Dr. Michelle Maidenberg by Elissa Hart Peer:
My husband Zvi (known as Vic) is on dialysis and needs a kidney donor to survive. I am not a doctor, so part of our journey has included learning about kidney disease and educating ourselves about organ donations.
I have become his patient advocate and nurse coordinator. It’s my mission to help him find a donor because the wait list for a deceased donor could be up to 8 years waiting time in New York for type O blood.
My husband has had kidney disease for 24 years, over the years, he has been stabilized with medications, some experimental and some that are even mind altering. Along with that comes a bevy of other medical issues that wreak havoc on the body. His autoimmune response and two bouts of pneumonia in 2018 put him in end stage renal failure.
He’s a fighter, he has always been one and will remain one. Even despite feeling like crap most of the time, he’s mustering up strength to continue fighting. He’s my hero, and the hero of our two children.
Until you are going through “something” or directly watching “someone” going through this distress, you can’t imagine what it’s like. It’s hard for me to explain it because the worry and fear are looming on my mind every second of every day.
Each time Vic goes through dialysis, he awaits a grueling, draining, tiring, muscle cramping, loss of appetite, and crashing experience. It’s incredibly heartbreaking to watch someone I love dearly suffer so bitterly. When my husband comes home, 80% of the time he doesn’t eat dinner, experiences cramping, and is out like a log by 8:00 PM.
My feelings ebb and flow. I sit there feeling sorry for him, feeling sorry for myself…feeling sorry that my life is no longer as I knew it, feeling sorry that he isn’t able to work the way he used to, feeling sorry that we are going through our savings like running water.
Then I stop feeling sorry for myself and I realize that I am fortunate, at least we have money saved, we have a roof over our heads, we live in a nice house. There are people who always have it worse. I then feel sorry that I was feeling sorry. Somehow, I’m hoping that it will all work out.
I myself went through 16 rounds of chemo, at age 45 for breast cancer. I was in a fog for 1.5 years. As a realtor, I never wanted any of my clients to know because I didn’t want them to think I couldn’t get the job done. After having a cancer diagnosis, you are always waiting for the other shoe to drop. After that experience I thought I could finally live in peace, then this happened.
To me, dialysis seems harsher than chemo. Maybe it’s because it’s not me suffering directly but seeing my husband suffer that’s so utterly painful. It could also be the caregiver stress and strain and never getting a reprieve from the worry and hopelessness.
Trying to find a kidney donor has become a full-time job for me. The pull on my heartstrings is painstaking. For the most part people have good intentions. When we’re contacted with others reporting that they’re in good health, have no family health history to speak of, and they would love to test on Vic’s behalf, we become so incredibly hopeful.
It’s happened so many times that individuals who sent a Facebook message, a text message, or who I had a telephone conversation with, never makes the call to test, I walk around with a heavy heart, because I lose my ray of hope.
Each time I have to hold the information at bay and avoid sharing it with my husband, my son, or my daughter because experience tells me that it’s probably false hope and it will probably won’t work out. I try to shield my family from the duress I’m sitting with. I continually keep my emotions and frustrations pent up, to shield them from the anguish of the continual ups and downs.
The hopelessness also comes from not having any viable family members to help Vic out. Our son tested and is not able to donate or be in a paired exchange, I am an only child and can’t donate because I had breast cancer, my husband’s sister passed last year at 53, and his other sister has diabetes.
My name is Elissa Hart Peer, you can message me on Facebook with any questions. We live in NY and are registered at Weill Cornell in NYC. Our insurance covers all medical costs. We are working with the nonprofit agency Renewal that will pay for all your expenses, travel, lodging, lost wages, child care, and aftercare. You must be a citizen or permanent resident of the United States for our insurance to cover.
I plea to anyone who is able and willing to save my husband’s life. I appeal to you on behalf of myself and my children. We truly don’t know what we would do without him, we love him dearly. Posted in Psych Central.