Becoming a Donor

     Robert and I have the same blood type, A+, and we have known that since we were expecting our daughter in 2015. I knew there may be a chance for us to match but that it would be much more likely for one of his blood relatives.

     In August of 2016, I made the call to living donor services to express my interest in being tested. Robert was actually not aware that I had been planning to call until later that day. Knowing that we had the same blood type and that, for medical reasons, a lot of his close relatives could not donate, I figured that I should at least try. I knew that if I didn’t at least attempt, I would always wonder if I would have matched.

     A few days following the initial call, I had a 90 minute questionnaire over the phone with the donor transplant coordinator. She asked me questions about my lifestyle as well as my personal and family medical history. She then explained to me what the steps of testing were and what I could expect through the process. 

     Here in Alberta, the living donor services is completely separate from the recipient services; therefore, very little is actually shared between the organizations. They even tell you that if you have any second thoughts and want to back out, you can do so with no questions. The recipient would not know that you chose not to continue; they would only be told that you weren’t a good match. Not that this mattered to me at all, but it could be quite an intimidating process and the fear of not being able to discreetly back out could be a make or break for those who are considering getting tested.

     The thing with donating, is that the main priority is the donor’s health to make sure that they are healthy enough that, by giving a kidney, their health will not be jeopardized if there are unknown risks, diseases or medical conditions. 

     Depending on where the testing is taking place, they may do the testing prior to finding out if the donor is a match, as they do here in Alberta, Canada. Or they may do the crossmatch testing first like they do in most of the United States. As impatient as I am, I do like doing the health testing based on the fact that some people have certain health conditions that would make it look on the cross match testing as though they are not a match, even when they are. The downfall? Lots of testing and time put in before you even know if you match.

     After the questionnaire, they sent me a package of information, brochures and requisitions for multiple tests.
     To start with I had to:

  • have a bunch of blood taken
  • Have an ECG (to check my heart health)
  • give a urine sample (urinalysis)
  • do a 24 hour urine test where I had to pee in a jug for a full 24 hours (this is the one I disliked the most)
  • have a TB (Tuberculosis) Skin test
  • do a 3-hour blood glucose test
  • have a chest xray
  • have an abdominal ultrasound (to see the layout of my abdomen and make sure that I wasn’t born with only one kidney, which is actually more common than you would think)

     I (finally) completed the above list of tests on January 12, 2017. This goes to show that these are time consuming for those of us who work full-time and can’t pound it all out in a few weeks. 

     As I mentioned above, my least favourite test was the 24 hour urine. I was instructed to pick up a urine collection jug from a laboratory, then, on the day of testing, to have my first pee of the day in the toilet and mark the time on the jug as my ‘Start Time’. After that, all of the pee in the next 24 hours had to go into the jug, including the first pee the morning after. Then I had to take the big jug of pee to the lab and have blood drawn to go with it. I had to choose to do it on a day where I was going to be home most of the day because I couldn’t carry the jug with me and I couldn’t leave any pee out.

     The first issue that I had was that they only gave me one jug and I am a person who tends to drink lots of fluids and pee a lot. So, needless to say, that jug was filled up before dinner. I did the test on a Sunday, so my lab was not open to get another jug. In a panic, i turned to google and then sent my fiancé to the store to buy a clean container to collect the rest of my urine for the remainder of the 24 hours. Apparently you are not supposed to do that and only the pee that was in the jug could be used for the test.

      They also never discussed proper storage for the pee jug. So I kept it on the shelf in my bathroom for easy access. Apparently that was wrong as well and it is supposed to be kept cool (like a fridge or cold garage). 

     A week or so later, my coordinator contacted me to tell me that the result for the 24 hour urine test was not good (obviously because I wasn’t instructed on how to do it properly from the lab). I was asked to repeat the test where I did it properly; I even kept my pee jug in our fridge (I think it weirded Robert out having a jug of pee beside the milk but whatever). The second result came back with amazing results.

     Any test that comes back weird or failed is always redone to confirm and make sure there was not just a problem with the test. This was great because, as much as I did not want to redo anything (especially the 24 hour urine), it took some of the pressure off by knowing that I had another chance if something wasn’t quite right.

     My next set of tests was in the big city, a 5 hour drive away on February 22, 2017. I was required to have a PAP test done by my family doctor prior to this date. 

This busy day of appointments included:

  • Bloodwork for the crossmatch and tissue typing (to see if Robert and I matched FINALLY)
  • Urine test
  • ECG (another one because the results of my first one never were recorded or sent to the donor coordinator)
  • Radioisotope GFR Scan with split function and fluid Loading (they injected radioactive dye into my arm through an IV, then I had to lay under a scanning machine for 45 minutes, then have blood drawn 1 hour after the injection and again 2 hours after that. This test shows the kidneys filtering the radioactive substance from my body and it measures the levels of the substance in my blood 1 and 3 hours after injection to be sure my kidneys were filtering properly).
  • Appointment with a transplant social worker (where they do a psychological evaluation, ensure that I was not being paid or pressured/forced to donate, discuss financial factors, etc)

     This was a very LONG day but it went quite well overall. And I was back to playing the waiting game.

     On March 7 2017, my transplant coordinator called to tell me that the Crossmatch was negative (WHICH IS GOOD!), meaning that our blood didn’t fight. And they were going to be booking me in to meet with a nephrologist (kidney specialist).

     I had to go back to the big city for April 6 and 7, 2017 for the next stage of testing.

     April 6 was the meeting with the nephrologist. He went over all of the tests that I had done and asked me some questions. He was very impressed with my health but said that I had to redo the 24 hour urine (again!) because of the poor result I got the first time. With the first test being bad and the second result being awesome, he wanted to ensure that the second result was the correct and consistent one.

     April 7 was my abdominal CT with contrast dye. This CT is a map for the surgeon, so that they can see the layout of my abdomen and where my major vessels are located to assess the risks involved and which side would be better to take from if I did make it to surgery. It also shows them the size of my kidneys and how many viens and arteries are going to each kidney (normal is having 1 vein and 1 artery but some people have 2-3 of each and that can increase risks). 

     I went home and, a week or so later, I completed the 24 hour hour urine test for the third time.

     It took a while to hear anything back but i finally got the call on May 3. My 24 hour urine test got another amazing result and the nephrologist figured that i am a good match and candidate for surgery. He signed me off to go on to the next step: meeting the surgeon on May 8.

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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 fiancé, 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…

Intro


     My name is Alycia, I live in Alberta, Canada and I am 24 years old. I have an amazing fiancé 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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