The backstory

“They think something is wrong with my kidneys”

     It was just after 5 am on February 24, 2016 when I received this heart-wrenching text message from my fiancĂ©, Robert.
     It all started 2 weeks prior, when Robert mentioned that he felt as though he needed to pee after he had just finished peeing. Naturally, we assumed it was an infection of his bladder or his urinary tract; so the next day, we made him an appointment to see our family doctor where he ended up on antibiotics for a bladder infection.
     As a couple of days passed, Robert began to experience a lot of nausea which is a side effect of the antibiotic he had be prescribed, so that is what we figured it had to be. More days passed and his nausea turned into vomiting a couple times a day, which turned into struggling to keep food and fluids down, so he stopped taking the antibiotics.
     The vomiting continued and worsened in severity as time went on. With a bit (a lot lol) of nagging from me, he went to the hospital early in the morning to get checked out and see about getting IV fluids to rehydrate. That’s when I received the text that started it all.
     I dropped my (at the time, 7 month old) daughter off at my mom’s and joined him at the hospital to find that they had run further tests and that both of Robert’s kidneys had failed for reasons unknown to us at the time. Because we have no kidney specialists (nephrologists) in our city, they were flying him to a bigger city, 500 km away to get him the care that he needed. With that news, my daughter and I drove to the big city to meet him there.

     It was a rollercoaster of craziness the first few days in particular. He was greeted with a kidney biopsy and having a central venous catheter (photo below) installed in his chest so that he could immediately start dialysis.

     About 48 hours and one dialysis session after arriving at the hospital, Robert and I were told that his kidneys had significant damage. His diagnosis? RPGN Type 1 (rapid progressive glomulerulonephritis).. Anti-GBM disease or “Goodpastures Syndrome”. Though, unlike the name would seem to suggest, good pastures were nowhere in our near future.

     Goodpastures Syndrome is a VERY rare auto-immune disease where the body randomly creates antibodies to attack the GBM (basement membrane) tissues of the kidneys. It is a VERY fast, random disease and no one is sure what causes it as of yet, but it is not believed to be anything hereditary.

     Robert was quickly transferred to the ICU where he continued hemodialysis and started a treatment called “Plasmapheresis”. This treatment is similar to dialysis in the way that it filters the blood through a machine, but rather than filtering out waste products, it was separating out the bad anti-GBM antibodies from the plasma of his blood and giving him donor plasma instead. They also started him on a medication (cyclophosphamide), that is used in chemotherapy, to suppress his immune system.

     He remained in the hospital for a month, while my daughter and I spent all of the visiting hours that we could with him. 

     Just prior to his release, his doctors decided to stop the immunosuppressive treatment, due to the fact that it didn’t matter whether his body continued to attack his kidney tissues; his kidneys were not functioning and he was going to need a transplant. They decided to allow the disease to run it’s course and go into remission naturally. He did have to return to the hospital for dialysis 3x per week for 4 hours per session.

     A few weeks after his release, something very unusual happened. 

     The GBM (basement membrane tissues) that are present in the kidneys are also found at the tops of the lungs and, in rare cases of his disease, those same antibodies can attack the lung tissues as well. Robert was one of those rarest of the rare cases, and he was re-admitted to the ICU to restart the Plasmapheresis and the immunosuppressive treatment that he was doing prior.


     After his second release, we had to remain in the city until a spot opened up at our dialysis unit back home. Basically we were waiting for someone to either get a transplant, move or pass away; as odd and morbid as that may sound. He did have to continue with his dialysis 3x per week, as well as receiving that chemo medication (cyclophosphamide), through IV, once per month. He was also scheduled for a multitude of kidney classes, transplant classes, home dialysis information sessions, etc. Thank goodness for the fact that I was on Maternity leave during the whole ordeal so that we could stay with him in the city for it all.

     FINALLY, at the start of June, a spot opened up back home and we were able to return after months of being stuck 5 hours from home. He continued his dialysis 3x per week. He also made the 500km monthly drive to the city for his cyclophosphamide treatments until October of 2016. 

     In the summer of 2016, they began his testing and preparation to get his name on the transplant list for a deceased donor. But we had something else in mind…

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Intro


     My name is Alycia, I live in Alberta, Canada and I am 24 years old. I have an amazing fiancĂ© named Robert and we have a daughter who will be 2 years old in a couple of months. I work full-time in the sales industry, with a group of amazing, supportive people. Overall I am a very fortunate person.

     For those following, I chose to blog my story, not only for family and friends to keep tabs on me, but for people who are donating, or considering it, to have the opportunity to read a personal experience. 
Through being tested to be a donor, to finding out that I am a match for my recipient, I found that there were very few personal experiences from live kidney donors and it was very difficult to find information on what to expect during the process (other than generalized statistical information posted on hospital websites) and for me, I want to help others who want the information that I seeked but struggled to find.
     I will not be over-exaggerating or sugar-coating anything because the truth is important for those who are going through or are considering live donation to know. I will be sharing the Good, the bad and the ugly; the amazing moments, the nasty TMI facts and the raw emotions of it all.
This is my story as a living kidney donor.

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