We had hope ... until we didn’t.
When my husband was diagnosed two years ago with End Stage Renal Failure, the weight of the news was almost too much to bear. We bumbled through the 7 stages, and didn't get past denial and anger for some time. Meanwhile, our lives were upended. We moved, he started treatment, and I became a caregiver. New memories made in our brand new house were shrouded in sickness and pain.
Being only 48, doctors enthusiastically advised us to pursue getting him on the transplant list, which we did. Overnight trips to this hospital and then to that hospital. Following their rules and instructions to the letter. Scared of the future, we would ask questions like, "how long will it take to get a kidney?" and "how long before the treatment no longer works?" Our minds knew the reality, and our questions zeroed in on the fact he had a small window for getting a transplant before losing even more of his independence. Please, please don't let it go that long.
After 6 months of waiting, one Saturday afternoon in June, we got "the call". We have a kidney! A living kidney (the best kind). Miraculously, we were at the end of a donor chain. A free kidney without the unsettling death of the donor. Tears of joy poured. We had been trudging through hell and were about to climb up out of the hole. I couldn't believe it. I just couldn't believe it. There was going to be a finality to this. The pain and suffering was going to end - for both of us. The transplant surgery was scheduled for September. Wow.
The physical toll of the treatments on my husband was great. He was facing his own mortality, and every day he was reminded that he was at the mercy of the disease. Once we got the news, everything brightened. We started to enjoy life again knowing there was an end. We can endure it a little longer. It will end. We had a kidney ... until we didn't.
During the next 6 months, my husband's health degraded despite the good news. In July, he ended up having a series of amputations; first, toes, then, most of his foot, and finally his leg, and then later on two fingers. The doctors say this was unrelated to the kidney disease, but does it really matter? The fact remains, he was physically disappearing, and his transplant was in jeopardy.
By August, the emotional toll on me was harder to see than the physical manifestation of his illness on him. I had an "act now, cry later" approach to dealing with being a caregiver, and then after the amputations, I assumed the role of in-home nurse. My husband endured 3 amputation surgeries within a month. Well, one amputation, and 2 ablations, but who's counting. After the 3rd surgery, he wasn't even able to respond and interact. The pain and the medicine for that pain took all lucidity from him for several weeks. During this time, I was 100% engaged in his care. I took care of pills, redressing bandages, making appointments, and driving him to those appointments, hooked him up to the dialysis machine, and unhooked him 10 hours later - every day. I bathed him, fed him an, as tolerable as possible, renal diet, kept his living space clean and sterile. I took care of everything ... him. All this while trying to maintain my 9-5.
My own body felt the overwhelming pressure of keeping another human alive and safe from infection, in the form of neglect and stress. I had to reduce my hours at work, which meant less money coming in. My husband was already on disability and not working, so our family income was cut in half. The bills didn't change in accordance with income of course, so there was also that to deal with.
Healing began and the fog lifted from his mind as he was taken off pain medication. The dialysis endured, and now he's in a wheelchair. He regained some independence, but it will be a few months before he can be fitted for a prosthetic. Doctors try to empathetic. They know how hard it is, but they also see it every day, several times a day probably. Patients who are almost healed, get thrust back into the depths of illness. Hope lost, life diminished. He wouldn't be fully healed from his amputation to qualify for transplant.
We lost the kidney.
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I've posted other parts of this story here on prose as well. This is one of 3 stories I've written about my experiences as a caregiver. My post, "I almost left...." is also part of this story.
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Title - Still working on that one.
Genre: non-fiction - memoir
Age range - Adult readers
Word count - targeting 80,000 words. Manuscript is not yet complete.
Author name - Olivia Lee Hart
Why my project is a good fit - I am a debut author. This is a recount of 2 years of my life. I currently have written 3 short stories based on events that took place within these 2 years, and realized, this is my story. I am putting these stories together into a memoir.
The hook - The hook, is that it's all true. One unfathomable 2 years of truth. This will appeal to readers of books about being diagnosed with chronic illness, or books about caregiving for someone who's terminally ill.
Synopsis - My husband was diagnosed with a chronic illness, and was riddled with health problems - some related, some not - for 2 years until he received a kidney transplant. The story of my journey with him as his caregiver is entangled with the story of his coping with his disease and loss of mobility and independence.
Target audience - This story will appeal to adult non-fiction readers. It will sit nicely on the shelf next to "In Love", by Amy Bloom.
Your bio - I am a creative writer and digital photographer. I currently work as a creative web developer, designing user interfaces, writing/proofreading web and marketing content.
Platform - Currently, my writer's blog and social media platforms.
Education - Bachelor of Arts, English - Literature & Language
Experience - This would be my debut novel. I write regularly for work (web content writing) and on my blog. I have made a few submissions here and there to literary publications.
Personality / writing style - My writing style is conversational. I tend toward succinct and straight-forward language rather than lofty overly descriptive language.
Likes/hobbies - Photography, Blog writing, my "day job" is Web Developer
Hometown - I hail from Myrtle Beach, SC (born in central Ohio)
Age - 50