Release Day, Sunday June 18

     I woke up with insane nausea when the nurse came in at 8 am to take my vitals. The nurse got Zofran going through my IV, just as my surgeon and one of his colleagues came in. 
     He was telling me that he wanted to have me released as soon as possible. I told him that I was hardly able to function through the nausea and that I currently felt like I was about to throw up. 
     He said: “There are two reasons that we like to get our donors out sooner VS later after surgery. The first reason because, the longer you’re in the hospital, the more chance you’ll get sick by catching something. The second reason is that it costs money. ”
     Yes, “it costs money” he literally said that. 


     At this point I was so nauseated that I did not even care what he was saying, nor did I pay attention as he continued talking. I then grabbed the bowl on my table (that the nurse put out just in case i had to puke) and I started throwing up; right in front of my surgeon and his colleague. They left as I was throwing up and didn’t come back. 


     I awoke a few hours later to my mom and my daughter in my room. Robert’s family took a day off from the hospital and went site-seeing a few hours away so she was my only visitor that day. 


     The nurse gave me more anti-nausea medications and a Tylenol to keep me feeling alright and my other surgeon came in not long afterwards. 


     He was much nicer than the surgeon that came in earlier that morning. He was understanding and he said that he was going to write up my discharge papers and that I could leave whenever I was confident that I felt decent enough to go. He prescribed me tramadol for the pain and 2 anti-nausea medications to take at home, if needed. 


     I started packing up my things, as I waited for the anti-nausea IV medications to finish. The nurse then removed my IV,  gave me my discharge papers and I was free to go. 


     We picked up my prescriptions and then my mom drove my daughter and I to my dads house, where I would be staying after surgery. Roberts family came home from their day trip shortly afterwards. 


     We had chili for supper and I was able to eat, finally! I was taking pain and nausea meds around the clock to keep myself from feeling gross. 

     That night, my daughter went to bed with my dad and his girlfriend so that I could get a good sleep (and because I couldn’t lift her or anything). I called Robert before bed, to say goodnight and I finally got to lay down to sleep in a comfy bed after days of a crappy, uncomfortable hospital bed. 

Day 4, Saturday June 17

     I spent the majority of the fourth day in bed because I had a terrible head ache and I was extremely nauseated. They gave me Gravol, first thing in the morning and I woke up a few hours later feeling even worse. They then took my IV pain medication away and began to give me Tramadol pills to take orally instead. 
     Robert came to visit that morning before the family members all arrived. I was feeling rough and waiting for the tylenol and Zofran to kick in.  Robert sat at the end of my bed, keeping me company between my waves of nausea. 
     When family members showed up, Roberts other sister Jessica was unexpectedly there with her daughter; as she also flew in from Ontario to surprise him. I was so sick that I did not say much and everyone left shortly afterwards to visit in the gathering area to let me rest. 


     I slept for a few hours and awoke to see that my mom was sitting at the end of my bed, quietly waiting for me to wake up. I was feeling a bit nauseated still and they gave me Maxaran to help until I was due for another dose of Zofran. 
     I told my mom about the student nurse the night before and she was a bit pissed off about it. She told my nurse to see if she could make sure I had different night shift nurses that night and she told my nurse how crazy the night before was. My mom being a nurse herself, she spoke with experience to my nurse and she made things happen. My mom then left to let me sleep away my nausea and I woke up at 9:30pm. 
     I showered after i woke up and then Robert came to visit me again before bed. I attempted to eat a few bites off of my dinner tray but my queezy stomach and lack of appetite didnt let me get more than a bite in. I had eaten next to nothing since surgery and I still couldn’t stomach anything. 

Day 3 Friday June 16

    Friday, the second day after surgery, I was a bit more awake but I was hit with terrible nausea and a pounding headache in the very early morning hours. They gave me Tylenol and Zofran for the nausea and I went back to sleep until they came in to do my vitals later that morning. 

      I felt alright for a couple hours and Robert’s sister Nichole flew in from Ontario to surprise us in the hospital. We all went to the gathering area on Robert’s unit to visit, as there were too many people to fit in either of our rooms. 

     I lasted a bit there visiting before I was exhausted and needed to return to my room for a much-needed afternoon nap. 

     That evening, Robert came to my room to visit and I noticed that the hand that I had my IV in was very swollen. I called the nurse and they told me that my IV must have pulled out of my vein and that my IV fluid was going into the tissues of my hand instead. They had to cut off my hospital bracelets, as they were too tight on my swollen wrist and they stopped my IV drip. 

  

     While waiting for the nurse to come back with supplies to start a new IV, the exisiting IV pulled out and my hand began to profusely drip blood everywhere. I hit the button to call the nurse and waited at least 5 minutes for someone to come; by this point, I had quite a large puddle of blood on the floor beside my bed. 

     The nurse stopped the bleeding and shortly afterwards, a female nurse and a male student nurse came in to the room with a bunch of supplies. At this point in time, I was not aware that the male was a student. 

     They couldn’t put the new IV into my left arm because it was so swollen, so my right hand or arm was our only option. The student made 3 failed attempts at starting an IV in my good arm. The nurse then attempted 3 times to start one as well, but the student’s failed attempts ruined the ability to use any of the best spots and veins in that arm. During this ordeal, is when I discovered that the male was a student through their conversation. 

     I was frustrated at this point, as they called another nurse in to attempt the IV. After she had 2 failed attempts she went to get someone else to try. 

     At this point, it had been well over an hour since I had been removed from my IV drips and I had not had any pain meds in that time so, not only was I upset and frustrated, but I was in a fair amount of pain. 

     The student nurse came in to check on me while we waited for someone else to come and try. I explained that I was in pain and he told me that I couldn’t be hooked back up to my pain meds because he “didn’t see me hooked up to them or taken off of them”. I was even more upset. 

     An older female nurse then came in. She was sweet and she asked how I was doing. I was so frustrated and upset that I was crying as I explained that I was angry that I only had one good arm and they let a student ruin it. I also told her I was in a lot of pain and that the student told me I couldn’t have my pain meds back, even if they got the IV going. She comforted me and hugged me, telling me that she was going to try one time to get the IV in and that she wouldn’t do it if she wasn’t sure that she could get it in. 

     She was annoyed that almost all of my good arm had been ruined with a million pokes from failed attempts but she went for a hard vein and got it in on the first try. She also got my pain meds and saline drip back up and running. She left, only to return a few minutes later with lotion to rub my back. This lady was literally the sweetest. 

     Robert was angry about the student nurse destroying my good arm and telling me wrong information. My nurse came in and Robert told her that we didn’t want to deal with the student nurse. 

     She replied with: “but he is my student.”          

     Robert said: “Yes but he doesn’t know           what he is doing and needs to be supervised”

    She then said: “but he is graduating right away”

     Robert then repeated his argument and insisted that the student not deal with me without supervision. She did not say much and left the room. 


     Shortly afterwards, Robert went back to his room for the night to sleep. 

Day 2 Thursday June 15

     The morning after surgery, a nurse removed my catheter and I was able to stand up and walk to the bathroom on my own. 

     I was still very tired and I took multiple naps, on and off, as visitors came with flowers. 

Robert was doing very well. The kidney was producing LOTS of urine and his creatinine levels (levels of waste in his blood) had gone down a HUGE amount. Because of this, Robert did not require any dialysis runs post-surgery. This was awesome news! 

     After lunch, my nurse finally gave me the OK to walk over and visit Robert. A few of us squeezed into his small (non-private) room and talked for a bit. My visit ended up being short because I was exhausted and I was falling asleep, sitting on the foot of Robert’s bed and Robert was no more awake than I was. 


     After another nap, a few family members came in to visit for another little bit, before saying goodbye for the evening. 


     That night, I had my first post-surgery shower and Robert came to visit me in my room for a bit before bed. 

The Day of Surgery

     The morning of surgery started off a bit more hectic than I had originally planned. My mother in law banged on my door at 5:25 am. We had all slept through our alarms and I was supposed to be at the hospital for 5:30.
      Luckily I had packed everything for my hospital stay the night before; minus a few last minute things (like my cellphone charger).  I grabbed the couple things and thew on the clothes I had laid out for myself the night before and my mother in law, sister in law, my fiancé’s aunt and I all rushed to the hospital. On the way,  I called to the unit that I was supposed to be going to and told them that I was on the way but 30 minutes or so away still. 


     Not how I wanted to start the morning. 


     When we pulled up to the hospital, my mother in law dropped me off at the doors and I ran upstairs. They quickly ushered me into a room and gave me a hospital gown and compression stockings to change into. 


     Robert made it up to the room that I was in and was able to sit with me for a few minutes until the porters came to take me to the surgical unit. We gave our hugs and kisses as family members poked their heads in to wish me well. 


     The porters then wheeled me into the pre-surgical area and “parked” me in a row full of people. We were all lined up in our beds, side by side, like cars in a parking lot. 


     The anesthesiologist was the first to come by and see me. He introduced himself and discussed with me what to expect when I go in. Similar to any surgery, I was going to be brought in and they would put a mask over my face that would put me to sleep in a matter of seconds and I would remain asleep until brought to the recovery room after the surgery. Pretty straight forward. 


     A nurse came to see me next, to put in my IV and she did get it in on the first try. Now I was just waiting for the surgeon to come by and have me sign the final consent form for surgery and then I would be brought in. 


     I was the last patient in the lineup to be taken into my operating room. I knew what to expect when I was brought in, as I had a few surgeries prior, so it was not intimidating for me. The room was filled with bright lights, machines, equipment, tables of surgical instruments, and about 8-10 people (2 doctors, the anesthesiologist, and multiple nurses). 
    The moments following surgery were a bit of a blur. Unlike my previous surgeries, I don’t remember being in the recovery room. My first memories are actually of the porter wheeling me to my unit, where I passed family members in the waiting room on the way. 
     I was pleasantly surprised to have been given one of the couple of private rooms on the unit. With this, I had my own washroom and shower. I was very happy to now have any roommates to disturb my sleep. 
     For pain control, I was given dilaudid through my IV, that was controlled by a button that I could push once every 6 minutes for another dose. They also gave me saline and an antibiotic (to prevent infection) through my IV. 
     I had a catheter tube in,  which was a blessing and a curse because I was stuck in bed but I was a bit sore and way too out of it to attempt any solo bathroom trips. 

     Family all piled into my room to visit and keep me company. When Robert came out of surgery a couple of hours later, they told me that his surgery went very well and that the kidney had started producing urine while they were attempting to get it all hooked up to him. GREAT NEWS – this meant that the kidney was immediately working! 

     Everyone went home that evening and Robert and I were doing well. Neither of us were allowed to be up and walking, let alone going to see each other, but we texted between our many naps throughout the evening and we spoke on the phone for a few minutes to say our good nights before bed. 

Transplant Eve

     Its the night before transplant and today had been a crazy day for all of us. 

     We drove the 5 hours to the city just two nights ago and we are staying with my dad during our time here.  Robert and I left to the hospital at 6:00 this morning.  I had more blood work, a chest xray, pre-surgery meeting, an appointment with the anesthesiologist and a quick meeting with my donor coordinator. 

     The blood work consisted of them taking four tubes of blood from me; one of which was to register me with the Canadian Blood Bank (in case I end up needing a blood transfusion). I even got a fancy red braclet that I have to wear until after surgery that has my blood bank registration number on it. 

     My pre-surgery meeting was fairly straight forward.  Nothing to eat or drink after midnight, shower the night before,  shower again the morning of, etc. Fairly straight forward instructions that you probably have heard before if you have ever had a surgery. 

     The anesthesiologist told me that I would likely have a general anaesthetic, as well as an epidural for pain management afterwards. He went over my chart and was not concerned about me having anesthesia at all. 

     My coordinator had me fill out a quick questionnaire and asked me if I had any questions for her or concerns about the surgery.  It was a brief appointment and she will be back in to see me the day after surgery, to see how I am doing. 

     Meanwhile, Robert was admitted into the hospital at 8:00 am. He had a pretty free day and was able to wander around the hospital. We are not sure exactly why Robert was admitted so early the day before surgery, but it is a normal procedure for transplant recipients at this hospital. We spent the day visiting around the hospital and getting a few last minute things together (buying a $71 monthly parking pass instead of paying $14.25/day for day passes, etc). 

     Robert started his final dialysis run at 6:00 pm (hopefully he wont need any dialysis after the transplant),  and I left the hospital to escape for a break. 

     Robert’s mother and sister are in town with me and his aunt is flying in as we speak (will arrive sometime after 11:00 pm tonight).  My mom is on her way, driving down and will be here in an hour or so. 

     The plan is to drop our daughter off with my mom when she gets into town and then pick up Robert’s aunt from the airport. Then I will have to shower and sleep for a couple of hours before leaving for the hospital at 4:00 In the morning. 

     I am to arrive at the surgical unit at 5:30 am but im hoping that I’ll be able to sneak in to see Robert for a few minutes before hand. 

     The surgery is almost here; less than 12 hours away. Im still feeling pretty good (minus tired) and not too nervous at all. Anticipation is building though and soon I’ll be wheeled in.  This may be the last time you hear from me in here until my post-surgery updates. 

     T-minus 10 hours….. 

One Week To Surgery: Appointments and Hiccups

     Tomorrow will be one week until the transplant.

     A week ago I had my pre-surgery blood/urine testing and some of the blood was taken to redo our crossmatch testing for confirmation. They took 11 vials of blood and I had to provide a urine sample.

     Yesterday, my fiancé, Robert received a call from his coordinator, asking us to drive the 5 hours to the city for an appointment with a nephrologist early the following morning. This last minute appointment was to discuss something that they had discovered during our final cross matching. His coordinator did not give us much information about it but said:

“We have discovered that it is not as close of a match as we would like it to be.”

     Luckily, my coordinator called shortly after and wanted to provide a little more information on the matter. She told me that our previous crossmatching was good but that they did more extensive testing this time and discovered that Robert has an antibody against me. She didn’t get too far into things, but said that we would be given 3 choices:

1) Continue with surgery as planned, knowing that the transplant would be a higher risk than we previously thought.

2) Sign up for the “Paired Donation Program”; where recipients and donors that don’t match 100% are put into a database. They then would look for a donor who matches Robert, that has a recipient that I would match and the recipients would swap donors. Essentially like musical kidneys.

3) Get put back on the transplant list and wait for a deceased donor.


     We had the meeting this morning with a nephrologist and Roberts Transplant Coordinator.

     They explained that Robert at one point was positive for an antibody, known as BW4, BUT he is currently negative for it.

     All of our current crossmatching is good but they went back and crossmatched my blood with his monthly samples of blood, going way back to February 2016 when he initially took sick.

     In March of 2016, Robert received 3 blood transfusions, due to losing blood in complications when doing his Plasmapheresis treatments. It was a blood sample from March 2016 (right after he received the 3 transfusions) that he had this antibody; just the one sample. 

     Not presently having the antibody is a good thing and it means that, if we were to procede with the transplant, we wouldnt have to postpone to do treatments (such as: IVIG or Plasmapheresis) to suppress kill off the antibodies prior to surgery. These treatments are not necessary at this time; but are possible in the future if his body were to begin to create the antibody again and/or his body attempts to reject the kidney.

     Due to this, the surgeon still wants to go ahead and we decided to as well. They will have to start him off on higher doses of immunosuppressive medications immediately following the transplant.
     According to the “3 Year Success Rate” chart that the nephrologist showed us that, by proceeding with the transplant: 

-he poses more of a risk of losing the kidney within 3 years than a perfectly matched living donation. 

-he would have an equal or slightly higher success rate than getting a kidney from a deceased donor.

-he would have a much higher success rate than a recipient that has CURRENT, active antibodies against their donor.
     One surgeon will be doing both mine and Robert’s surgeries and, not only is he comfortable doing the surgery with the slightly higher rejection risk, but the transplant center is quite experienced in doing them and they have a treatment plan ready for him for post-transplant.

     Robert will be admitted to the hospital the day before Surgery, while I will have my pre-surgery appointment and bloodwork to register me for the National Bloodbank (in the rare case that I would need a blood transfusion during sugery); this is a normal surgical procedure. I will not be admitted to the hospital until the day of surgery and they figure that I will be brought in to the operating room around 7:30AM. 

     My surgery will last 2-3 hours and it will be traditional, open surgery (see photo below of where my incision will be).

     I will be out of surgery between 9:30 and 10:30AM. They will immediately clean the same operating room and Robert will be brought in. His surgery will last 4-6 hours, depending on how quickly he can get out of the Recovery Room afterwards.

     Nerves have definitely begun to set in for Robert, as his mother and sister flew out here last week to be here for the big day. Between their anticipated arrival, and pre-surgery appointments coming and going, the date is quickly approaching now and everything is becoming quite real to him. 

     I am still not scared or overly nervous myself but we will see if that changes in the next 7 days..

Meeting the Surgeon

     On May 8, I had to drive back to the city for an appointment with the surgeon. I had already been signed off by the nephrologist, saying that my kidneys were good and that my body could handle the donation process.

     I met with one of the main surgeon’s colleagues first. He was a great help, explaining things to me and answering the questions I had for him. He explained the procedure of both open, and laparoscopic kidney donation. He even drew me a very life-like representation of where the incisions would be…

…and it’s a good thing he pursued medicine over art!

     I was told that my kidneys are identical in size, and I have one vein and one artery going to each kidney (Which is normal and good). My Renal function (GFR) is 115, which is amazing! Anything 90 and above is considered normal/high.

     My left kidney does a bit more of the work than my right (left 57%, right 43%), which is very normal; not that one necessarily functions less due to problems or anything, but because one kidney may just work a little bit harder than the other. They were not concerned about this in the slightest.

     The first surgeon then left to get the main surgeon. They told me that I was able to have open or laparoscopic surgery and discussed with me which type of surgery I preferred. I told them that there are pros and cons to both and that I was okay with either of them. 

     The positives of having an open surgery are:

  • Allowing surgeons to place sterile ice directly on the kidney to prevent damage during surgery
  • Donors experience less urinary leakage after surgery

     The positives of having the surgery done laparoscopically are:

  • Shorter recovery time
  • Shorter hospital stay
  • Smaller incisions
  • Fewer post-operative complications

     They decided that both of my kidneys are equal and that they would be taking my left one to give to Robert.

     They shook my hand and said that I was approved for Surgery and it has been temporarily booked for June 14, 2017.

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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