The next phase: Transplant
I am sitting down to write this entry a full four weeks post-kidney-transplant! That's right! On Sunday, May 13, I got "the call" and received a kidney transplant in the wee hours of the morning on Monday, May 14, 2018. For the last few weeks, I've been thinking that I wanted to get online and write up a series of blog posts about that experience. Believe it or not, despite being in recovery from surgery, those four weeks have been super busy! So I'm just now getting around to gathering my thoughts and putting digital "pen to paper."
First, to clarify, I was technically listed on two transplant lists. I was placed on the deceased donor list just last summer. However, because they count your dialysis time as "wait time," I had accrued almost 6 1/2 years of wait time on the list, which put me pretty close to the top. The average wait time in the DFW area with my blood type (O+) is 6-7 years, so I knew that it was possible I could get a call anytime. However, it still seemed to be taking forever! Meanwhile, one of my good friends underwent evaluation for living kidney donation. Since he wasn't the same blood type, when he was approved, they put us on the kidney paired donation list, which is completely separate from the deceased donor list. In essence, both lists run simultaneously. The deceased donor list is limited to the geographic region, whereas the kidney paired donor list is national. It was truly a roll of the dice as to which call would come first.
Sunday, May 13, was the day my mom was returning from her trip to France. I offered to pick her and her friend up at the airport, so Mike and I got up that morning and ran a couple of errands, and then I headed to DFW. After getting my mom and her friend loaded up in the car, we were sitting in the terminal parking lot, and my phone rang. I didn't recognize the number, and we were catching up, so I declined the call. My mom's friend noted that the area code came from Illinois, which is where she was from. Moments later, my mom's phone rang, and she made a comment about the area code. It was the same as the number that had just called me. I jokingly told her to answer it because "it could be a kidney," but she had already declined it. I remembered in our orientation, they told us to always answer the phone regardless of area code because the calls often came from a nurse's private cell phone. They also told us that the nurse would always leave a voicemail. I checked my voicemail, and - sure enough - there was a message!
As I was listening to the message, the phone number called again, and this time, I definitely answered. I will never forget driving down 635 Express while crying and talking to the nurse on speakerphone. She told me to be sure not to eat or drink anything and to get to the hospital within 4 hours. As I drove, I called Mike and my friend Sarena while my mom began calling members of the family. I dropped my mom and her friend off, drove to McKinney to pick up Mike, and we headed to UTSW.
After we got settled in my room, the nurses began their pre-transplant testing. At this point, we were still hesitant to let too many people know because they still had tests to run, and the surgery wasn't definite yet. They did an X-ray, an ultrasound, some blood work, and the crossmatch test. Everything came back clear, and they told us surgery would probably be around 1 in the morning.
Meanwhile, our friends Sarah and Nathan came to the hospital to visit and take Mike to dinner. While they were gone, I listened to my "You've Got This" playlist and let Andra Day's voice wash over me, encouraging me to rise like the day. After dinner, Sarah took Nathan home, and Mike and I watched Wonder Woman on TV while we waited for surgery. Can you see a trend here? I was all about the strong female power! Let's do this!
Soon after my mom and brother arrived, the surgery transport arrived at 11pm, and they said they were ready to go. We all gathered our things and headed downstairs to the surgery floor.
Mike stayed with me the entire time, sleeping on the pull-out sofa bed and eating from the cafe downstairs. He was having to work during the days, but thankfully, he was able to work remotely and stay with me. My mom went to our house and picked up our dogs, and they stayed with her the whole week. It was such a relief to know that they were being taken care of, and I was so grateful that I had Mike with me.
First, to clarify, I was technically listed on two transplant lists. I was placed on the deceased donor list just last summer. However, because they count your dialysis time as "wait time," I had accrued almost 6 1/2 years of wait time on the list, which put me pretty close to the top. The average wait time in the DFW area with my blood type (O+) is 6-7 years, so I knew that it was possible I could get a call anytime. However, it still seemed to be taking forever! Meanwhile, one of my good friends underwent evaluation for living kidney donation. Since he wasn't the same blood type, when he was approved, they put us on the kidney paired donation list, which is completely separate from the deceased donor list. In essence, both lists run simultaneously. The deceased donor list is limited to the geographic region, whereas the kidney paired donor list is national. It was truly a roll of the dice as to which call would come first.
Sunday, May 13, was the day my mom was returning from her trip to France. I offered to pick her and her friend up at the airport, so Mike and I got up that morning and ran a couple of errands, and then I headed to DFW. After getting my mom and her friend loaded up in the car, we were sitting in the terminal parking lot, and my phone rang. I didn't recognize the number, and we were catching up, so I declined the call. My mom's friend noted that the area code came from Illinois, which is where she was from. Moments later, my mom's phone rang, and she made a comment about the area code. It was the same as the number that had just called me. I jokingly told her to answer it because "it could be a kidney," but she had already declined it. I remembered in our orientation, they told us to always answer the phone regardless of area code because the calls often came from a nurse's private cell phone. They also told us that the nurse would always leave a voicemail. I checked my voicemail, and - sure enough - there was a message!
As I was listening to the message, the phone number called again, and this time, I definitely answered. I will never forget driving down 635 Express while crying and talking to the nurse on speakerphone. She told me to be sure not to eat or drink anything and to get to the hospital within 4 hours. As I drove, I called Mike and my friend Sarena while my mom began calling members of the family. I dropped my mom and her friend off, drove to McKinney to pick up Mike, and we headed to UTSW.
After we got settled in my room, the nurses began their pre-transplant testing. At this point, we were still hesitant to let too many people know because they still had tests to run, and the surgery wasn't definite yet. They did an X-ray, an ultrasound, some blood work, and the crossmatch test. Everything came back clear, and they told us surgery would probably be around 1 in the morning.
Meanwhile, our friends Sarah and Nathan came to the hospital to visit and take Mike to dinner. While they were gone, I listened to my "You've Got This" playlist and let Andra Day's voice wash over me, encouraging me to rise like the day. After dinner, Sarah took Nathan home, and Mike and I watched Wonder Woman on TV while we waited for surgery. Can you see a trend here? I was all about the strong female power! Let's do this!
Soon after my mom and brother arrived, the surgery transport arrived at 11pm, and they said they were ready to go. We all gathered our things and headed downstairs to the surgery floor.
I met my transplant team, and they prepped me for surgery. The doctors had just completed another kidney transplant right before me, so we waited while they prepped the operating room. After being wheeled into the OR, the anesthesiologist asked me whether I liked beaches or mountains. I said beaches, and he said, "OK, let's go to the beach." That's the last thing I remember...
I woke up in a LOT of pain. I was mashing the heck out of that little glowing button. They were doing an abdominal ultrasound over the new kidney, but - because of the air in my belly from surgery - they had to use heavy pressure, and it HURT. A lot. I later learned that I have quite the mouth on me under anesthesia. 😳
I was back in my room around 5:30 am, and the doctors informed me that the surgery was incredibly successful. The kidney started working in the OR right after they transplanted it. After all that talk about possibly needing hemodialysis after transplant and delayed graft function (aka sleepy kidney), mine was clicking right along! In fact, I later learned that the surgeon came out and told my family after surgery that it was an awesome kidney, and it was incredible how well it was working.
So, now for some logistics. First, kidney size. Kidneys are about 5" x 3" in size. When transplanted, they connect the vein and artery to blood flow, and they connect the ureter to the bladder.
Also, many people are surprised to know that they don't remover the diseased/damaged (original) kidneys. They just add a third. They tuck it into the pelvis in front of the pelvic bone. Doesn't that transplanted kidney look beautiful nestled into its little nest there?
After surgery, they gave me a little kidney pillow to hold on my abdomen. The incision is about 7 inches long. I have two layers of dissolvable stitches internally, and they covered the exterior with Steri-strips. They also removed my peritoneal dialysis soft abdominal catheter, so I have another incision that's about 4 inches long.
Monday, I was on a diet of clear liquids only, and my nurse checked on me hourly for a full 24 hours. I was not in ICU, but instead, I was on a post-surgical floor. We didn't have to wear protective clothing or masks as long as we stayed within the glass enclosure on the floor. Even guests didn't have to wear a mask during visits.
Monday, I was on a diet of clear liquids only, and my nurse checked on me hourly for a full 24 hours. I was not in ICU, but instead, I was on a post-surgical floor. We didn't have to wear protective clothing or masks as long as we stayed within the glass enclosure on the floor. Even guests didn't have to wear a mask during visits.
The doctors kept asking me what I was going to name my new kidney, and Mike and I debated several names. Eventually, we settled on Maya - after Maya Angelou - because she embodied so much of what defines a strong woman to me. Her words have often given me guidance and encapsulated authenticity and kindness.
They had me up walking Monday afternoon with a walker, gait belt, and nurse. It was painful, but they want you up and moving as soon as possible. I can't even articulate the difference between the care I received at UT Southwestern and my 2011 stay at Centennial. At UTSW, they were prompt with my medications, and I didn't EVER have to call for a nurse. They were just there!
Over the next four days, my diet became unrestricted, and I was walking four or five times a day. I had Occupational Therapy and Physical Therapy to help me navigate with the incision. I don't like how pain medication makes me feel, so I stuck with Tylenol mostly. I was also super excited that OT gave me this nifty grabber!
The post-transplant care can be somewhat daunting at first. There are a lot of medications, and the nurses quiz you on them whenever they administer meds. It's part of something they call "Freedom Day," which is when you go home with confidence that you can manage your vitals and medications. I was discharged from Centennial back in 2011 without any assurances that I knew what I was doing with my medications, so I really appreciated the education piece of the process at UTSW. My days in the hospital were busy. I saw my surgery team, my nephrologist, social worker, dietitian, pharmacist, post-transplant coordinator, physical therapy, occupational therapy, and of course - nursing staff - so every day was pretty non-stop.
Mike stayed with me the entire time, sleeping on the pull-out sofa bed and eating from the cafe downstairs. He was having to work during the days, but thankfully, he was able to work remotely and stay with me. My mom went to our house and picked up our dogs, and they stayed with her the whole week. It was such a relief to know that they were being taken care of, and I was so grateful that I had Mike with me.
Originally, they planned to release me on Wednesday, which was only three days post-transplant, but I still needed one more IV, so they decided to keep me until Thursday. I was released Thursday around lunchtime, and Mike drove us home. I couldn't believe that - in only 4 days, my life had changed so dramatically.
Amongst all this, There's also the reality that another family somewhere was in the process of grieving the loss of their loved one, so as sweet as this gift has been, it's tempered by the reality that it was someone else's loss that made it possible. All I know about my donor is that he/she was younger, in Texas, and his/her death was due to a cardiac event. I will have the opportunity to reach out to the family through a letter in 6 months to a year, and I plan to do that. Right now, though, I know that their loss is very fresh, and I think of them - and the donor - daily.
For the rest of my life, I plan to preach the value and importance of organ donation to anyone who will listen. Less than half of our population are registered organ donors, and it's just so easy to do. If you'd like to ensure that you're listed as an organ donor, simply visit this site to sign up.
Thank you so much for your love and support throughout this whole journey. I remember - back in 2011 - when I was having to make a decision about which dialysis modality I wanted to use - I said to Mike and my doctors that I wanted to do peritoneal dialysis in part because the catheter was removable, whereas a hemodialysis fistula is permanent. I had daydreams that - someday - I'd get a kidney transplant and have the PD catheter removed - and it would be like none of this ever happened. Of course, that's silly. This is a huge part of my story and journey, and I will never, ever, go a day without remembering where I've been. My body may have the scars to show my story, but - for the first time in a long time - I feel that my life is much, much more than just this. And as I adjust to my new normal as a transplant survivor, I know that every step of this has been for a reason.
Thank you so much for your love and support throughout this whole journey. I remember - back in 2011 - when I was having to make a decision about which dialysis modality I wanted to use - I said to Mike and my doctors that I wanted to do peritoneal dialysis in part because the catheter was removable, whereas a hemodialysis fistula is permanent. I had daydreams that - someday - I'd get a kidney transplant and have the PD catheter removed - and it would be like none of this ever happened. Of course, that's silly. This is a huge part of my story and journey, and I will never, ever, go a day without remembering where I've been. My body may have the scars to show my story, but - for the first time in a long time - I feel that my life is much, much more than just this. And as I adjust to my new normal as a transplant survivor, I know that every step of this has been for a reason.
Next up - Post-Transplant Recovery
Comments
Post a Comment