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Living Kidney Donor Match
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I was diagnosed with kidney failure in October 2015 and started dialysis. I’ve been ill to varying degrees for a majority of my twenties and early thirties. I was diagnosed with Inflammatory Bowel Disease (IBD), specifically ulcerative colitis (UC) and celiac disease in 2008. I’ve visited multiple specialists and tried multiple medications which I’m either allergic or developed antibodies to. In spring 2012, I was sent to the Nephrologist for the first time after routine blood work from my primary care physician showed elevated creatinine. The course of treatment was to continue to monitor my level every few months.
In spring 2013, my gastroenterologist was considering a new course of treatment for my UC and sent me for more labs. At this point, my creatinine spiked even higher, which required hospitalization and a course of steroid treatment. This was the first time, dialysis, was mentioned as a possible treatment if my condition worsened. I was diagnosed with acute kidney disease and a biopsy revealed interstitial nephritis, which was attributed to the untreated inflammation in my bowel. After a course of steroids my creatinine returned to an elevated but less concerning number and my Neprhologist continued to monitor my level every few months.
Although I continued to have symptoms of ulcerative colitis, my kidney function remained stable until sometime in 2015. During summer, I felt ill most days. I would go to work, come home and sleep. I spent most weekends on the couch and could not play with our son or help around the house. I had unexplained exhaustion (no matter how much I slept), intermittent chills, sweats and fevers. My kidney function was tested at the end of May and was still at my baseline (around 2.3), so we attributed these symptoms to an ulcerative colitis flair and medication failure. I started a new IV medication sometime that summer but did not get any symptom relief and still felt very ill.
After much encouragement from my wife and being sick in bed on my 33th birthday in October; I finally went for more blood work and found out my creatinine was the highest it had ever been (around 7.8) and I was in acute renal failure. Again, that dreaded word, DIALYSIS, was discussed as a possible treatment if my numbers didn’t improve.
My Nephrologist put me out of work for a week and did blood work every couple of days. During that week my stress level and fear as well as my creatinine were on a roller coaster ride, going up and down. I went back to work the following week, went for labs every few days and received the life changing call a few days later: to report to the hospital because my creatinine remained elevated. I needed to be hospitalized to start dialysis at 33 years old with an almost two year old and a wife who was eight months pregnant. At the time, we hoped was this was temporary and would jump start my kidneys to function properly but unfortunately, this wasn’t the case. After a few months of dialysis with no improvement it was determined that I would need to remain on dialysis indefinitely or receive a kidney transplant.
As well as physical symptoms, the quality of life and emotional issues as a result of being beholden to a machine are the biggest change with this diagnosis. Most of my same age peers are able to travel with their families, play with their children and are progressing in their careers. Our travel is limited due to the time commitment of dialysis and some days it's difficult to keep up with my 3 and 1 year old boys.
I continued to work full-time and was commuting about an hour and going to 4th shift dialysis, however in February 2017 I lost my job. I've never been fired from a job prior, and I didn't want admit it to myself but I was spread too thin between working, commuting and dialysis. I've have always been a hard worker and admitting I couldn't do it all was very hard. Plus, due to the time commitment I was missing out on family time and when I was home I wasn't completely present due to the exhaustion. After I lost my job, we decided that I would be a stay at home Dad.
My biggest fear living with kidney failure is not being able to see my
children grow up and being here for them long-term.
A lot of people don't understand that there is no cure for kidney failure. It's been difficult to explain to family that yes dialysis treats the illness but it will never cure me of this disease. It will keep me alive but I will always be beholden to a machine until I receive a transplant. Also, the "you look great" and the "invisible/hidden" nature of the disease is difficult because people don't "see" my illness.
I try to maintain a positive outlook and focus on what is going right and not on my illness. Spending time with my wife and children as well as the blessings they bring to our life. We try to maintain as much "normalcy" as possible for the kids and still share experiences with them despite having to stay close to home.
This poem is inspiring to me because the author wrote it while he was being treated for tuberculosis and he wouldn't allow the illness define him.
BY WILLIAM ERNEST HENLEY
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.
Patient & Transplant Hospital Information
Patient: William English
Location: Bellmawr, NJ
Date of Birth: 10/07/1982
Donor Blood Type Needed: O +/-
A Kidney Exchange is an option, which means if you are willing to donate to someone other than Bill in order to help him, there will be a swap of appropriately matched kidneys and blood types. It essentially helps more people in need and you do NOT NEED to be blood type O +/-
Transplant Hospital: University of Pennsylvania in Philadelphia, PA
Submit this form if you have any interest in being a living donor. Sending this form DOES NOT commit you to surgery. It is simply the first step in the process.
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