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Alycia & Robert

It’s often difficult to assess whether an individual has kidney disease. Unless someone is being regularly checked on by the healthcare professional, it’s now become too common that an individual realize their kidneys have been damaged to a point where failure is inevitable or have already failed until it’s too late. Why? The symptoms are nearly non-existent until it’s too late.

Such was the case for Robert who, in a matter of days, went from being slightly annoyed at needing to consistently pee, to experiencing nausea, vomiting multiple times a day, to being told something might be wrong with his kidneys.

A routine blood and urine tests confirmed what the doctors suspected – Robert’s kidney had failed. Living in Grande Prairie, Robert was transferred to Edmonton and was immediate placed on dialysis.

No one saw this coming. Not Robert, not his fiancé Alycia and daughter, nor his family.

Yet there he was, confined in a hospital for one month, while doctors assessed him and planned the best treatment plan. Robert was diagnosed with Goodpastures Syndrome, an extremely rare auto-immune disease that attacked his kidneys and then his lungs. While doctors were able to save his lungs through an aggressive immunosuppressive and plasmapheresis treatment, his kidneys were had been severely damaged.

Diagnose can be difficult to understand and process. Given the life changing news kidney disease patients receive, a strong support system is vital. While the news shocked Robert, he considers himself fortunate to have Alycia and his daughter spend every possible visiting hour with him while he remained in Edmonton until a spot opened up at their local dialysis centre.

As Alycia puts it “basically we were waiting for someone to either get a transplant, move or pass away; as odd and morbid as that may sound.” Yet this is also a common struggle kidney disease patient’s face, especially for individuals living outside of major urban centres experience. It also an issue that increases stress and adds additional burdens to families coping with life changing news.

Seeing her fiancé in a position neither of them every expected to be, Alycia stepped up and began the process of being Robert’s real-life hero. It was truly an act of love, sacrifice, and strength as both Alycia and Robert’s journey included the “the good, the bad, and the ugly.”

Alycia is the first to say that the process of becoming a donor can be difficult and frustrating as potential donors undergo physical stress due to the examination that are needed and emotional stress while waiting for results. However, she knew she was Robert’s best chance of getting a kidney from a live donor. And because of this she never wavered throughout the donation process. Rather, Alycia focused her energy on the positive news she was receiving and what it could potentially mean for Robert.

As with all surgeries, both Alycia and Robert went over their ‘surgery plans’ with their medical team. When the day finally came, things could not have gone smoother. Robert, specifically, was producing “LOTS” of urine and his creatinine levels had gone down a “HUGE” among. As transplant patients, their families, and friends all know, this is exactly what a recipient and family wants to hear.

Although they were unable to see each other following the surgery, Alycia and Robert kept each other posted via text messages and were finally able to see each other on day 3 post surgery. While things were going smoothly for Robert, Alycia was feeling the effects of the surgery. She was in pain, she was nauseated, and she missed her 2 year old daughter, but she never regretted giving Robert the great gift possible.

Reflecting on her experience as a kidney donor, Alycia says “when you love someone, you give a piece of yourself to that person”. Looking at Robert, she says, “no questions asked, I sacrificed to give you life again. I love you so much that I gave a part of myself to you”.

In the words of Robert, “My life since surgery has been night and day. The mobility and freedom from a machine. The feeling of good health and the ability to be a better father through not having the constant sickness associated with Hemodialysis. I wake up looking forward to every day I can see my daughter and not worry about what arm to carry her in. My energy has come back and I am ready to take on the world. Thanks to the love of my life I have had a second chance. Before becoming sick I barely knew what a kidney did and certainly not the importance of it. After I became sick, I realized I was the vast majority of our society. The awareness of something so incredibly important and readily available, receives such little attention. The ability to become a hero to someone now needs to be talked about openly. I can call my fiancée my Hero. And I hope to encourage other to become heroes as well.”