Did you know that I have three kidneys? Soon, (hopefully), I will have 4!
One surprising thing I learned during my last kidney transplant was that the surgeons don’t take out your old ones due to surgical risk. They add the new kidney in your front pelvis area near your hip. Unfortunately, this means that they slice through your abdomen to put in the transplanted kidney…ouch. (Doing anything involving my abdomen was very painful for the first several weeks after my first transplant!)
Most people outside of the world of transplants don’t realize how arduous the process is to get approved for a transplant. There are many hospitals and transplant centers that perform the procedure. My experience is from Mayo Clinic, who provide amazing care for their transplant patients.
In Arizona, you can start the testing process to be approved for transplant once your kidney function is 20% or less. I hit that point back in the spring. Thankfully, I was already a nephrology (kidney) patient at Mayo Clinic, so it was an easier referral process to the transplant team.
My first appointment was with a transplant nurse coordinator for a preliminary screening. As a patient with an extensive medical history, I really appreciated not having to relive my painful experiences in full due to Mayo already having that information.
Then, my calendar filled up for the next few months. Currently, my arms are pretty bruised up with consistent lab appointments. They have tested my blood for many things to know which kidney donors could be a match. For example, my blood type and antibodies in my blood. They also performed a myriad of tests to make sure I am healthy enough to receive a transplant and take care of myself afterwards.
I have had an echo of my heart, EKG, chest X-ray, educational classes, psychiatrist and transplant nephrologist (kidney doctor). This week, I get to walk for 6 minutes (to test my pulmonary/lung function) and a test to make sure I can empty my bladder.
To come, I get to meet with a nutritionist, social worker, a transplant surgeon, a urologist, another nephrologist and continue to have labs and educational classes. During this process, the doctors may determine to order additional tests.
Once all of my transplant testing is completed, the transplant team will meet to go over the transplant candidates and determine who is approved for transplant. It is possible to be deferred due to additional testing needed or denied altogether.
During my first transplant approval process, I was surprised at the amount of testing and appointments that were required in order for me to be approved for a transplant. It took 9 months of testing for my first transplant, which felt like forever.
Knowing what to expect this go around has had both benefits and challenges. During my first transplant, many of the providers I spoke with told me how much my life would improve after a transplant. Well, it did, but for only a few months before an awful virus destroyed my kidney. The immunosuppression the doctors used was too much for my body to handle and my body couldn’t fight the virus in time.
There is a major mental and emotional element to what I am currently going through. Not only am I dealing with the numerous tests and appointments on top of my family responsibilities, but my kidney function has also been on a decline.
What does this mean? Your kidney is a filter for your body. When it is not working, your body is not filtering your blood as efficiently. This can leave toxin build up in your body and you feel like garbage. My stamina has declined, my muscles ache very quickly, and it is a challenge to perform chores and activities that require any physical strength.
Kidneys also help regulate your blood pressure. I have been struggling with orthostatic hypotension…aka I get dizzy when I stand up and often when I’m walking around.
It is a challenge to not be cynical about a second transplant when I lost the benefit of my first one so quickly. There is a component of anxiety in the waiting through all of the testing…then the waiting for the approval decision…then the waiting for the kidney transplant.
For my first transplant, I was shocked to receive a call from Mayo on the Saturday after Christmas. It was exactly one month after I had been approved for a kidney transplant, which is unheard of. Most patients on the transplant list wait several years for a kidney to become available. It was a miracle from God!
Additionally, I was planning on searching for a live kidney donor, as they last longer than obtaining a kidney from a dead donor. Since we are (in most cases) born with two kidneys and only need one to function, anyone can be tested to become a kidney donor. There are coaches from the National Kidney Foundation that will help you create a microsite for people to share to help find a donor. My site had just been approved the week I got the call for a transplant.
God has been faithful and He will continue to be faithful. I am blessed to live close to Mayo Clinic and to have a family, friends, and church community that support me. While I don’t know how or when I receive my new kidney, God will sustain me until that time and through the process.
My head knows this but sometimes my heart struggles. As I go through the transplant process for the second time, my only recourse is to trust in God.
There is a song that I heard recently by Leanna Crawford called “Do it afraid”. I hope her music video below will give you courage like it did for me.
❤ Gabrielle
People will ask me how they can get tested as a potential donor, so I included the link below.
Register as a potential donor – Donor Registration
psalm23 