“To the indiscriminate eye, this video appears to be just a typical father goofing around with his boys. But he is no typical father. Earlier that day, my husband Bill spent 4 hours on a dialysis machine. He’s beholden to this machine to keep him alive while he waits for a kidney transplant. He battles chronic exhaustion that no amount of sleep can repair, migraines and muscle cramps/pain. Since his diagnosis we’ve tried our best to provide as much normalcy as possible for the boys. Goofing around on the lawn may not seem like a celebration, but to me, it means he had a good day and can be present for us.
Wedding vows, talk about ‘in sickness’ and ‘in health,’ however when we got married 6 years ago, I didn’t foresee the ‘in sickness’ days coming so soon into our marriage. The past few years have been filled with a myriad of emotions: Frustration, sadness, anger and guilt relating to Bill’s disease. It also has been filled with many blessings in the form of our two little boys.
Frustration because Bill has no family history of kidney disease, and no common risk factors for the disease (i.e. diabetes, high blood pressure). He was diagnosed with acute kidney disease in 2013, treated with a course of prednisone, and his kidneys were stable for two years. We started our family and his condition(s) appeared to be under control. His doctors attribute his kidney disease to an allergic reaction to medication or from inflammation from ulcerative colitis. No one can really tell us why this happened to him and why after two years his disease progressed to the point of needing dialysis.
Bill was diagnosed with End Stage Renal Disease in October 2015 and began dialysis while hospitalized. At that time, I was 8 months pregnant with our younger son. Talk about stress! We knew he was not feeling well because he spent a lot of time over the summer sick on the couch. We didn’t expect this news though, and at the beginning they were not sure if this would ‘jump start’ his kidneys to function again or if would be on dialysis indefinitely.
Since being on dialysis, Bill has good days and bad days. At the beginning he was able to work, but it was taxing on him and he lost his job because he was spread too thin with the difficult schedule. He was not able to be present for us when he was home because he was so exhausted and he couldn’t give his all at work either. It eventually caught up to him. Since he stays home now, he goes to dialysis three mornings a week for about 4 hours. Most days following dialysis he is exhausted and usually needs to lay down to recuperate — sometimes for an hour and sometimes the rest of the day. Even simple tasks like cleaning up around the house wipe him out. He would like to help and be more physical with the kids but on most days, he is not capable of doing so.
As his primary support system, I try my best to be as empathetic and understanding as possible. But some days it’s really hard, frustrating and upsetting. I’m a social worker, so my job is emotionally taxing. So, on days I work, I wrangle the two little ones solo while trying to make dinner or straighten up the house, and sometimes frustration takes over. Mostly frustration at the disease because of what it robs him of. Unfortunately, at times the agitation comes out onto him and the kids. This was not exactly what we bargained for.
We also worry about our finances as he no longer is able to work and opted to start disability. He’s also battled with depression, which at times came out as anger and agitation on me and the kids. It’s also hard on the kids because they don’t understand why Daddy cannot play with them or why he can’t join us for activities because he is at the ‘doctor’ or doesn’t feel up to it. Our 4-year-old worries if Daddy will be home in the morning to take him to school or if will be at the ‘doctors.’ Our little guy knows that Daddy’s kidneys are broken.
Our older son understands Daddy’s machine cleans his blood. They’ve also visited Daddy’s dialysis unit. This is not something that we thought we would need to teach them at such a young age.
We started his first transplant evaluation in February 2016. We started at the one closest to our house, which after nine months rejected him from their list. They felt because he has other health conditions, that it was too risky to list him and recommended we go to one of the transplants centers in Philadelphia. We are lucky that we live in an area with access to excellent healthcare options. The wait time for a kidney from a deceased donor in our area is about 5 to 7 years for his blood type. There are about 100,000 people across the country waiting for kidney transplant. While dialysis keeps him alive and does the work his kidneys can no longer do, it’s very harsh on his body. Due to the wait and his age, it is recommended that he find a living kidney donor.
Bill is O+ and he is directly compatible with O+/-. However, his unit participates in paired exchange so if someone with an incompatible blood type is willing to donate on his behalf to someone else, in exchange Bill would receive a kidney from a capable donor.
Unfortunately, Bill does not have any family willing or offering to be tested, which has been difficult to process. If roles were reversed he would be the first in line to help his family. We are not sure why they have not come forward. We’ve had very direct conversations about his need and the severity of his illness, but there has been no effort on their part to be tested.
I am considering donating but due to our children being so young it would be difficult for us to both be out of commission at the same time. My parents are extremely supportive and would help us but it would be difficult all around. This is our Plan B, while we seek other donors through social media. We’ve had some friends come forward and even strangers through our Facebook page, but no one has completed the process yet. We are hopeful because of other stories of people finding donors in this manner and we received great support through the kidney community on Facebook and Instagram. We are also hoping to spread awareness for kidney disease and the need for living donation.
At the beginning of February, we went to meet with another transplant center in Philadelphia to discuss having Bill duel listed or relisted at their unit. His current unit has been very strict with the living donation process, so we are exploring other options. We are sorting out insurance and such and are hopeful he will be listed there soon.
This would mean the world to our family. His fear is that due to his illness, he won’t be around to watch the boys grow up; dialysis is taxing on his body and shortens a patients’ lifespan. Although transplant is not a cure, it is easier on the body than dialysis and could lengthen his lifespan. I need him to be here for this crazy journey of parenthood, and the boys need their Daddy.
Our daddy needs a kidney.”
This story was submitted to Love What Matters by Laura English, 35, of Bellmawr, New Jersey. She posts updates on her husband’s kidney search on their Facebook page. Submit your story here, and be sure to subscribe to our best love stories here.
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