Corey's new kidney

I have to talk about this. Talking about things and writing about them is how I process important events in my life. To be honest, a lot of what we went through I haven't been able to tell anyone. So, I'm finally going to tell the whole story. Sorry if you are offended by this or surprised, but I really don't care! This is for me! I need to be able to look back and remember the struggle we went through and the amazing journey we have been on.

When Corey was diagnosed with diabetes a few years ago, we were shocked! It was January 8th, 2008 (I had to look that up on one of my old calendars!)  I remember that I was sleeping during the day after a night shift and Corey crawled into bed with me around 1:00pm to wake me up and tell me the news. He had been to the doctor to get his prescription for blood pressure medicine renewed and they discovered he had a blood sugar of over 350!

 I don't know why it came as such a surprise. Corey's mom had diabetes. Corey's dad has diabetes or is considered pre-diabetic. Heridity is a bitch sometimes! Okay! A chronic disease! This really sucks! We are going to have to lose weight, exercise and completely change the way we eat. I remember Corey saying he thought he would be able to handle it as long as he didn't have to give himself shots! Man! Little did we know. Initially, he did start by taking oral medication, but shortly after he was diagnosed, his doctors discovered his kidney functioning was only at 45%. Since the oral meds were hard on his kidneys, he had to switch to insulin.

Corey quickly got his blood sugars under control and around that time lost about 70 pounds. He started seeing an endocrinologist and a nephrologist. He wanted to do everything right. But, it seemed like nothing he did mattered! Each year, he lost about 8% kidney functioning. Even though we knew what his declining kidney functioning was eventually leading to, we ignored the reality of his failing kidneys and hoped for the best for several years.  Maybe his kidney functioning would level off?

How low can you go? Interesting question! Corey's nephrologist said every person is different. He knew some people that could barely function on 15-18% and another woman that had been getting by for 10 years on 10-12% kidney fucntioning. But, Corey's kidney functioning never leveled off like we hoped. It just kept going down. Once your GFR (glomerular filtration rate) drops below 20% you are eligible to be placed on the deceased donor list. In November of 2010, Corey and I spent an entire day at HCMC being educated about the process of kidney transplants. This was really the beginning of the process for us. I'm glad I didn't know at that time that it would take us almost two years for Corey to get a kidney! Although sometimes I am ashamed of how impatient and frustrated I was with the whole process. I know there are people that wait many more years then we did or that die before a kidney becomes available. But, when it is someone you love and their life, you do not wait patiently!!!

How do you ask someone to donate a kidney to you? How the hell do you do that? It was not easy for Corey to say the least. Luckily, when most people heard what he was going through, they volunteered to be tested to see if they were a match without Corey having to ask. Corey started by talking to his siblings. One brother offered to get tested right away and the other agreed to begin the testing process after being asked. Corey had several friends at work that immediately started going through the testing process and I had several friends that did as well. Not the same blood type? Immediately eliminated. I wasn't the right blood type! Dammit! Corey's good friend from work wasn't the right blood type! But, amazing news! One of Corey's brothers and one of his friends were the right blood type and a perfect match according to their initial lab results. His brother and his friend started going through the additional (EXTENSIVE) testing you need to go through to be approved to be a kidney donor.

The transplant center would tell us NOTHING!! HIPPA you know! Literally nothing! It was so frustrating! They wouldn't even tell us if anyone had agreed to undergo testing or where they were in the process. They didn't tell us if anyone was a match. They told us NOTHING. Everything we heard was directly from Corey's brother and his friend. Now, for the other problem we encountered! Corey is literally dying! Okay, I'm not even being overly dramatic. He was! We began to walk that fine line between wanting his potential donors to hurry the f*&^ up and not wanted to pressure them so much that they decided not to do it. How do you ask someone "Hey, have you gotten all your testing done? How's it going? Could you hurry up?" Eggshells. You really don't want to piss your potential donor off so they get frustrated and change their minds about donating. Weeks and months went by. Weeks and months!!! Never ending not knowing! Can you even imagine what that feels like? Corey and I would fight because I would harrass the hell out of him to call his brother and his friend to see where they were at in the process and he just didn't feel comfortable doing that. He didn't want to push them. Didn't want to bother them. Didn't want to make them mad. He would eventually call and leave a message with his brothers who lived out of state and his call wouldn't get returned for weeks! Can you imagine what that feels like? Seriously, I really was going out of my mind. One brother that lived out of state was going through problems getting the clinics out there to understand that the transplant center up here was going to pay for all the testing. Blah! Blah! Blah! Blah! His other brother, we simply never really heard from again after he agreed to go through the testing. Corey even called one day in desperation and gave him an out. He told him that if he didn't want to donate a kidney to him, he would completely understand, but that we just needed to know, because if he wasn't going to be tested to donate Corey a kidney, we needed to pursue other options. His brother said, "Oh no! I'm going to do this!" That was the last we ever heard from his brother until we had to see him at their mom's funeral two weeks before our transplant surgery was scheduled! Nice way to treat your family HUH? His brother left him to die! I will never forgive him for that! I can't!

Well, after months and so many unending days of waiting that I can't even count, we finally learned that both Corey's brother and his friend had been disqualified to donate a kidney to Corey. WTF!!! He had two potential donors and they were BOTH disqualified! We were absolutely devastated!!!! Now what?  Now what the f$%* were we going to do? Images of dialysis started flashing before us! It was hard to imagine a life like that! We were both young with busy work schedules and busy kids. How was that even going to work? What the h*%$ were we going to do?

Goddammit! If only I were a perfect match from the beginning! When we learned that Corey's two potential living donors had been disqualified, another option presented itself that we really hadn't thought of before. I still kick myself that we didn't start this process immediately! But, hindsight is always 20/20! Paired exchange! I couldn't donate directly to Corey, but maybe I could donate a kidney to someone who knows someone that could donate a kidney to Corey. These exchanges can get complicated; sometimes involving 4, 6 or even 8 people. I made an appointment at HCMC for testing. I got all the testing done in ONE day that we had waited months for his brother and friend to get done. Seriously!! One week later, the tranplant center called me and said that I'd been approved to be a kidney donor and we were placed on the paired exchange list. Because of Corey's blood type, they explained that we could wait years on the paired exchange list.

So....once again, the future stretched out before us bleak and unknown. We needed to decide on diaysis. We met with a home dialysis team to receive some education on home peritoneal dialysis. We had already decided that blood dialysis (hooked up to a machine at home or at a center for several hours during the day, three days a week) just wasn't an option. Peritoneal dialysis. Gentler. More effective. You can hook up to a machine and do a "run" at night or do several smaller exchanges throughout the day. Initially, it sounded pretty good to do night runs. That way, you would be free all day long, right? Yah, not so great! You sometimes had to do 8-10 hour runs. Because Corey has to get up at 5:00am to go to work, that would mean he would have to be downstairs, in the bedroom, hooked up to the peritoneal dialysis machine starting at 7:00pm?! Don't think so! Oh my God! How were we going to do this?

Ambulatory peritoneal dialysis. This involved hooking yourself up (using an implanted peritoneal dialysis catheter) to a bag of fluids that would run into your abdominal cavity by gravity over about 30 mins and then unhooking yourself and going about your business for a few hours and then draining yourself and filling your self back up. You would have to do this 3-4 times a day. Wow! Okay! A lot of work, but seemed the best option to allow the flexibility in our schedule that we needed! Corey's work was less than helpful!!! They told him everytime he had to pause for 20 mins at work to hook himself up or drain himself, they were going to make him take PTO! Fan-fucking-tastic! What support! Seriously! Corey's nephrologist said they could make up a schedule for him so that he only had to do runs at home and could have longer "dwell" times. Okay! This is going to suck, but maybe this will work! We scheduled a surgical consult for the end of April 2012 to have Corey's peritoneal dialysis catheter placed.

What happened next is a miracle! Truely a miracle! THREE weeks after I was approved to be a donor and we were placed on the paired exchange list, we received a call from the transplant center that they had a kidney for Corey! Unbelievable!! We cancelled our appointment for the surgical consult. A new kidney!!!!

Now, they needed to find a donor for me to complete the exchange. Waited! Waited! Weeks! We think we might have a donor for you in Fargo. We'll mail you the testing supplies to have your blood drawn and sent to Fargo. Waited for the supplied to come in the mail. Had my blood drawn and sent to Fargo! Waited a week! Then got a call from Fargo. Please have your blood drawn again and sent to us! Waited for the supplies to arrive in the mail. Had my blood redrawn and sent to Fargo! Waited for weeks! No word! Seriously!!! Called the tranplant center. What's going on? Not sure. I'll call the transplant center in Fargo. Waited! Your potential donor has some high antibody levels to something or other making it more likely that your kidney will be rejected so that person has decided not to go through with the exchange.

Now what? We need to find you another recipient or Corey doesn't get his kidney. We will look through the registry at HCMC and Fairview. Waited for weeks! Weeks! Okay, might have found you a recipient! I'll mail you some testing supplies. Waited for the testing supplied to arrive in the mail, had my blood drawn and sent again. Meanwhile...Corey is getting sicker and sicker. Okay we have a recipient for you. But, Corey's donor is a directed donor and we don't want to stress that person out. That person will be the one setting the schedule depending on what works best with his/her work schedule to get off of work. Waited! Waited! Weeks!!!!!!!!

Finally got a date. August 16th, 2012! Scheduled our pre-op physicals. Saw the doctor down there. Oh, did the living donor coordinator mention to you that some antigen came back positive for hepatitis on your 4th set of labs? No! She didn't! I don't have hepatitis! Hang on, we need to consult with the liver guys and have another test sent out that will take a week to come back. We left our pre-op physicals not knowing if we would need to reschedule our surgery date or even if this was going to go through. Okay! Weird blip! Nothing to worry about because of this and this! They're going to give your recipient a Hep B booster just to be on the safe side and we will go through with this. Seriously people! I don't have Hepatitis!!!!

The night before surgery, we spent the night at a relative's house in Brooklyn Park. At midnight, the night before surgery (we were supposed to check into the hospital at 5:00am), we get a call from the transplant coordinator that a certain antibody that they only recently started testing for came back with slightly elevated levels meaning the chance for rejection could be higher. "Do you still want to go through with the surgery?"

Think about that question! We were FIVE hours away from check-in! We were woken up by this phone call! It didn't make sense to us! We never got to talk to a doctor about this until about an hour before surgery! DO WE WANT TO GO THROUGH WITH IT? Yes! They said they were still comfortable doing the transplant! So Yes!! We want to go through with it! Didn't sleep another minute that night! What else could go wrong? We checked in and we were still not sure if the transplant was going to happen. We wanted to talk to a doctor about this antibody. Once we did, we were reassured and finally sighed and said Lets do this! I was upstairs in pre-op and they were waiting on paperwork for me. Finally the paperwork was faxed and placed on my legs and they started wheeling me away. It wasn't until that moment that I knew this was going to happen for sure! I was scared, but so excited!!!!

I regret that no one was there to see Corey off to surery. He and my sister were when I was wheeled away. My dad was home watching the girls. Corey had to wait until his donor had surgery and the kidney arrived. I was in PACU and up into my room with my sister in attendance before Corey was even taken back for surgery. He was alone! Still one of my biggest regrets! But, it really couldn't be helped!

They wouldn't let us be in the same room! I got up to my room about noon as Corey was being taken back to surgery. He didn't get up to his room until about 5:00pm. My sister fed me ice chips and went back and forth between our rooms, but Corey was so out-of-it that first night, I didn't even get to talk to him until the next day. That was so hard!

Finally, the next day, I got up in a wheelchair and went to see him. It was hard! We were both in pain! He was on high doses of steroids that kind of sent him off his rocker. He was having anxiety attacks and when I was hurting physically, it was hard for me to deal with all of that emotional crap. But, we made it through! After four days in the hospital, I was discharged on a Sunday. I spent the night at my relative's in Brooklyn Park again. Every bump during the car ride was agony! They brought me back to the hospital the next day to see Corey. He was so miserable, but he didn't want to stay. He didn't want to be in the hospital alone. He had hardly been up walking and had just gotten his catheter our that morning, but he begged to be discharged. That was probably our biggest mistake! We came home that Monday evening and he really shouldn't have been out of the hospital yet. He could hardly walk and was in so much pain and I couldn't help him. There was a lot of pain and a lot of tears those first few days! Corey had 59 pills and 6 shots of insulin a day. He had to weigh himself daily, measure his urine and take his vitals twice a day. It was rough routine to follow when we couldn't even move around or lift anything!!! Those first days at home were so much harder than we anticipated! You don't realize what you all do in a day until you literally can do nothing! My dad and sister helped with the girls and cleaned and did our laundry! Corey's sister took the girls for a few days that first weekend we were home. Friends visited and brought us food! We survived!

Follow-up was intense!!! Corey had labs at the HCMC transplant clinic three times a week for NINE weeks. We were supposed to stay in the Cities during this time, but we refused. We needed to be home for the girls. So, we drove down to Minneapolis three times a week. My dad drove us until I started driving. Labs were up and down and Corey was always worried it meant he was rejecting his new kidney. It took weeks to get his blood sugars under control. There were constant adjustments to his medications and how often he had to check his blood sugar. But, in hindsight, nothing major ever went wrong. Corey's kidney started working immediately! He has had his ups and downs with his labs and adjustments of his medication, but he has never had a rejection episode. And never any problems that weren't fixed with some adjustments in his medication. He had his six month follow-up on Valentine's Day and his doctors are amazed at how well he is doing.  It really is a miracle! He feels amazing!

"I was sick wasn't I?", he asked me. "Yes, hon. You were!"

The future now lies before us filled with hope and possibility......He is free, not chained to some machine! We can vacation and live our life and do things with our friends and the girls. And we appreciate it all the more because of how close we came to losing everything!