In the summer of 2004 we found out that my husband may have issues with his kidneys. After lab tests and a double kidney biopsy, it was confirmed that Paul had Stage 2 (1-5 scale with 2 being “low kidney function”) kidney disease, due to a genetic condition called IGA Nephropathy (IGA). This condition had affected his body since he was born, but kidney disease is often a slow and silent killer so he didn’t know about it until he was 33 years old. With IGA, anytime Paul caught a respiratory infection like the common cold, his body was unable to break down the antibodies (white blood cells) used to fight the virus. All the years of the antibodies being forced through his kidneys caused scarring, holes and irreparable damage to the tiny filtering units called glomeruli. His kidneys had progressively lost their ability to clear wastes from his body.
As harsh as this was to take in, we focused on the good news; which was that he would likely maintain enough kidney function to last into his late 50’s or longer without having to rely on dialysis or a transplant. With children ages 12, 9 and 2, Paul and Jen were relieved to know that he could put this issue on the back burner for 20-25 years and focus on living.
Almost a decade went by before Paul’s health began to decline. After numerous visits to the nephrology doctor it was determined that his kidneys had degraded at a faster rate than initially thought. In March 2014, only ten years later, it was confirmed that Paul was in Stage 5 renal failure.
Given his low kidney function, Paul had limited options and the next step was to go through the approval process to be added to the kidney transplant wait list and begin dialysis.
Paul and I tried to put our disbelief and anguish aside and be positive. We busied ourselves with researching transplant hospitals, wait times, doctors, and how to accept life living on a dialysis machine. We discussed things with our children now 23, 19 and 11, to help them understand how our lives would change and what could be expected moving forward. The whole family stayed positive and supportive of one another during this trying time. Our two older children and me decided to be tested as kidney donors.
Thank you to Eric Schmidt Photography Chicago for the post-operation photo shoot!
In addition to our immediate family, relatives, co-workers and friends of Paul stepped forward and offered to be tested as donors with the hopes of shortening the wait time on dialysis and the lengthy transplant waiting list. The wait list for cadaver kidneys was 5-7 years in Chicago. Paul and I knew that finding a living donor match was a long-shot, but our extensive online research led us to numerous national kidney exchange programs.(read more about this here)
We knew that because finding a living donor match is so rare, this swap process would be most likely be the best route to finding a kidney for Paul, so I started the long process of becoming medically eligible to donate my kidney.
Imagine my surprise when the first labs came back and it was determined that Paul and I met the initial criteria to be a match! This news was almost too strange to believe but I felt lucky. We were told not to get our hopes up just yet because of the many tests and procedures involved with matching the tissues and antibodies. It would be a lot of testing for me and it was a long shot. The doctors told us that everything would have to be perfect and that there was a 2% possibility for spouses to be matched. I was excited and hopeful and asked that we start the process right away.
(Read more about what it takes to be a living kidney donor)
After over a month of doctors, labs and hospital visits, it was time to patiently wait for the results. We were called to the doctor’s office in August 2014 to hear the news. After some explanation about the numbers that determine the eligibility of a matching donor and recipient, it was found that we were indeed in every aspect, a truly perfect match. It was almost too much to wrap our heads around.
The next step was to schedule the surgery.
The doctors set a date for the transplant with us knowing that there were still more compatibility test to be done. It was challenging to wait because Paul’s health was declining so quickly. He was being poisoned by his own blood, but the doctors could not put him on dialysis because it increases the risk his body rejecting my kidney.
After two emotional postponements due to lab errors and further testing, the date of October 1st, 2014 was finally set in stone. We had learned to be calloused and guarded in case the transplant did not go through for some reason. We joked a lot and acted nonchalant about the ordeal but we were hoping deep down that it would all work out this time.
In the early hours of October 1st 2014, Paul and I traveled into the city of Chicago for the transplant operations at Rush University Hospital. I went into surgery first so they could remove my left kidney, and by the late afternoon it had been successfully transplanted into Paul’s lower abdomen.
I had minor complications during my surgery. Paul had two complications so serious that caused the surgery to be stalled twice and threatened his life. They almost had to abort the whole transplant while Paul was on the operating table, but thanks to the expertise of the surgeons at RUSH Hospital , Paul’s life and my (Paul’s new) kidney were saved.
It was a total success!
Three months since the surgery, all was well. Recovery was difficult at first due to the pain and slow pace but even mores because we were bored. Neither of us are people who sit still, so Paul and I painted the interior of our home. We were careful but painting didn’t require much moving around and it helped pass the time. I worked from home and went back to work after two weeks. After some time we were back to normal with Paul feeling better than ever and me feeling normal. Our main change was drinking a lot of water!
In the next few years, Paul regularly visited the hospital to monitor his kidney function. In addition, Paul had to take many pills each day which included anti-rejection and immunosuppressant pills. He would take these pills twice a day for the rest of his life which was much less intrusive than dialysis and should have extended the life of his new kidney at least 20 more years.
I believe support from family and friends is the key to handling difficult situations. We could not have kept our optimism without the love and care from the people that we care so much about! Our closest friends even threw us a Kidney Transplant Party to celebrate the excitement and it was creative and fun and so thoughtful.
We have learned that life is precious and can change on a dime. Cherishing friends and family takes priority over everything.
Love what matters and hold tight to it.