Our Transplant Story
In the middle of a Pandemic and four years after a PKD diagnosis, I donated a kidney to my husband.
The Diagnosis
The moment I heard the words I knew our lives wouldn’t be the same.
It was June 26, 2016, and my husband, Eric Swanson, was admitted to the Veteran’s Administration emergency room for extremely high blood pressure. By the time I got there, he had already found out. He looked at me with tears in his eyes and said, ‘I have polycystic kidney disease (PKD). It’s genetic and there’s no cure.’
In that instant, we turned a corner. Our way of life needed modification, new emotions needed processing. We were being forced to adjust to a new reality. I had never heard of PKD but I knew it was serious. Our education began by learning the language of kidney disease: nephrologists, eGFR (estimated glomerular filtration rate), creatinine levels, kidney transplant, living donor, cadaver donor, amlodipine, renal diet, pain, nausea, and abdominal discomfort to name a few.
Polycystic Kidney Disease is an inherited disorder caused by clusters of cysts, non-cancerous fluid-filled sacs, which vary in size and cause the kidneys to enlarge over time. This causes high blood pressure, damage to the organ, and flank pain. It is a slowly progressing disease with no cure, however; a kidney transplant can extend and vastly improve the quality of a PKD patient’s life.
You have two kidneys that filter and clean your blood. The eGFR number is the rate of filtration your kidneys can handle. An average adult has a number between 90 and 110 ml/minute. Think of it as a strainer whose job is to filter water from the pasta. Imagine water flowing freely through small holes, just as a kidney would filter your blood. Then you slowly pour the pasta in and notice that the amount of water able to flow through the holes is diminished by the pasta, just as the cysts make it difficult for the kidneys to function efficiently. This puts a strain on other organs, including the heart. The day Eric was diagnosed his eGFR was 26, he was already in stage 4 renal failure. Anyone with an eGFR under 9 generally needs dialysis which means that a few times a week you get hooked up to a machine that mechanically cleans and filters your blood. If possible, it is best to avoid dialysis before a transplant.
The doctors told us to watch and wait until his numbers got below 20 as this is when they start the process for candidates to be put on a transplant list. It is a number we began to pay very close attention to.
We Wait
Over the ensuing years, we slowly adjusted to this new reality. The first thing that needed tweaking was Eric’s diet. Anyone familiar with a renal diet knows there are four things to be aware of: too much protein, potassium, phosphorus, and sodium. Our bodies are essentially chemistry labs that are affected by everything we put into them. Add the wrong chemicals to a body that already has a problem filtering toxins and you wreak havoc on the system; the toxins stay inside instead of you instead of getting flushed out.
Shifting to a new diet was a challenge for him because nearly all of his favorite foods, particularly red meat, were now on the no-go list. For the first couple of years, he could get away with cheating on this diet and not feel any repercussions, but as his eGFR numbers went down so did his tolerance for the foods that messed with his chemistry.
A healthy kidney is about the size of your fist but if you have PKD your kidneys can grow abnormally big. Eric’s are each about the size of a football because the cysts have completely overtaken them. From time to time these cysts can burst, causing excruciating abdominal/flank pain. But on an average day, his enormous kidneys encroach on his other organs, distend his abdomen, and produce an array of discomfort.
Finding the right cocktail of blood pressure medication was also a challenge. The most commonly prescribed ones adversely affect your kidneys. He finally got the right combination which has minimized the headaches. I had no idea there were so many blood pressure medicines out there.
The most insidious and annoying side effect of this disease was a lack of energy. His body was working harder and harder to maintain homeostasis and to filter toxins and it took its toll systemically. I have no idea how he managed to go to work when he was so fatigued all the time.
We called it the trifecta when all three symptoms flared up at once — pain, nausea, and headaches.
This was his life. Every day. There was never a day that he felt great anymore.
Transplant List
We both love to travel so in September 2019 we spent ten fabulous days visiting my best friend and her family in Ashland, Oregon. Eric did surprisingly well with only one day spent on the couch in pain. We knew this would be the last big trip before he got a new kidney or had to start dialysis. The watch and wait game was coming to an end.
When his monthly bloodwork came back in October that fall, his eGFR was 19. We had moved from waiting to action.
For the next several months, he went through a battery of tests to make sure there were no underlying health issues that would complicate or prevent the transplant. We also attended a kidney transplant education class put on by the Veteran’s Administration. It wasn’t until we were leaving this class that I first gave serious thought to becoming a donor. We found out that the average wait for a cadaver kidney is at least 3 years, which may as well be a lifetime when you feel horrible every day. We also found out that a live donor kidney is the dream scenario because there is less risk for rejection, it lasts considerably longer, and it moves the time frame up substantially, from years to months. A live donor is someone who donates an organ while still alive. We have two kidneys but don’t need both to live a perfectly normal life so it becomes possible to save a life through kidney donation if you are healthy. The recovery time for the donor is only about three to four weeks.
Today, of the 109,535 people awaiting a transplant, 92,458 are waiting for a kidney. Over 3,000 new patients are added to this wait-list every month and on average 13 people die each day while waiting for a life-saving transplant. Last year 6,867 out of 23,401 kidney transplants were from live donors. Although this is the largest number of live donors in US history, it is still woefully inadequate to meet the needs of everyone on the list.
I have had two surgeries in my life, a hysterectomy and an intestinal fistula repair, and the way I saw it, both were about as complicated as taking out a kidney the size of a fist. I was healthier than I had been for those and the recovery time of approximately three weeks seemed a small price to pay for giving the gift of life to someone, so I felt hopeful when I went to get bloodwork to see if I was a match.
I’m a MATCH!
On June 3rd, just a day before Eric’s 51st birthday, I received the news. My blood type came back 0 negative, a universal donor, and a match for Eric! We both burst into tears of relief and happiness. Instead of an agonizing wait of years, he would only have a few months before receiving his new lease on life. Emotions were high and I truly felt blessed to have been given this opportunity to literally save my husband’s life.
Now it was time for me to jump through the same hoops he had in the fall and have a battery of tests performed to ensure the transplant would be feasible. At the time, I was 52 and healthier than I’d been in a while, but knowing I would soon have a thorough check-up gave me a moment of pause. I knew there were a number of pre-existing conditions that would disqualify me. My thoughts went immediately to cancer. Not only did both my parents have cancer, but every single one of their 13 collective siblings did as well. Here I have to credit meditation, visualization, and what I call mental cleansing for allowing me to ride through the waves of doubt with a deep knowing in my heart that I was meant to do this.
I should mention that it is not necessary to be a blood type match to donate a kidney. If I hadn’t been, we would have continued with what’s called an unmatched donation. This means that my kidney would have been matched with someone else’s and their live donor would have given Eric his/hers. An unmatched donation requires more coordination and time because there are now two couples to schedule for surgery the same day which means four operating rooms and four surgeons and their staff. It is immensely more simple when you’re a match.
Why I’m sharing my story
Before I began this journey I gave little thought to kidney disease. I had no idea the need for a live kidney donor was so great. It wasn’t in my ballpark.
Now that I know how insurmountable the need for live donors is, I feel compelled to share my journey. I love to write and consider it a privilege to share the knowledge I’ve gained from my experiences with others in my shoes. Four years into this, more and more friends and family have shared their personal stories of kidney disease and how it has affected them. It is a ubiquitous disease with many tentacles, PKD being just one. The bottom line is, kidney disease will kill you, and every year there are tens of thousands of people who are painfully aware of this fact. If our story can help at least one person make the decision to donate, then this will have been worth it.
The Pandemic’s silver lining
By the time we found out I was a match for Eric, Florida had been in total quarantine because of the Coronavirus for nearly three months, since mid-March 2020. Navigating the VA healthcare system during a once-a-lifetime pandemic proved to be the silver lining throughout this whole ordeal. Since I am not a veteran but was donating a kidney to my husband, who is a Navy veteran, I was considered collateral in their system. This allowed me to get all my testing done at the Baypines VA which is about twenty minutes from our house. Time spent in waiting rooms, for sure the biggest inconvenience when seeing doctors, was non-existent during my summer of appointments. Most of the time I was called back for my test before I could even sit down in an eerily empty, waiting room. The hospital was operating with a skeleton crew that performed only medically necessary procedures so it was like a ghost town in every department I visited.
The list of scans and tests I needed to complete was exhaustive and included: a mammogram, chest x-ray, EKG, colonoscopy, cardiac stress test, CT scan of my abdomen, and a 24-hour urine sample collection. As each test result came back within normal parameters, both relief and nervous anticipation would wash over me. At this point, we thought we would be scheduled for surgery by the end of summer or the beginning of fall but, as we would find out, the pandemic had some snags for us in that silver lining.
We flew to Pittsburgh in the middle of November and arrived at the hospital early Monday morning to meet the doctors and the transplant team. I had to jump through a few more hoops and get another chest x-ray, another EKG, a contrast scan of my abdomen for 3D imaging, a carotid doppler, a nuclear test for kidney function, and had 25 more vials of blood drawn. It was getting real. We had been cautiously optimistic up to this point, realizing that any abnormal test result or the discovery of a serious medical condition would disqualify me from donating and put a wrench in our fairytale scenario. But so far so good.
Dr. Henkie Tan, the surgical director for kidney transplants at the Pittsburgh VA, pioneered laparoscopic live donor kidney surgery in the mid-1990s and has been performing them since then. His friendly manner and quirky sense of humor immediately put us at ease as he explained in great detail what to expect during and after the surgeries. For one, he said my recovery would be quicker since the laparoscopic surgery was minimally invasive. I would have three small, round incisions in my abdomen from the robot that would detach the organ and a two-inch incision at my bikini line where the surgeon would take it out. Eric would be sliced open about eight to nine inches from the front of his right hip to just past the other side of his belly button to create a space big enough to insert my kidney. He also said Eric would require more days in the hospital afterward for monitoring to make sure the new kidney was working efficiently and his bloodwork was normal.
The other members of our transplant team included the transplant coordinator, the social worker, psychologist, and pharmacist; all of whom inspired as much confidence in us as Dr. Tan had. We were as ready as ever.
After we got back to St. Petersburg, I got a call from my transplant coordinator telling me a few of the results from the Pittsburgh tests required more exploration. My heart sank. More tests. I had to wear a blood pressure monitor for 24 hours, take another 24-hour urine collection, a glucose tolerance test, and more specific bloodwork. Weeks later I breathed a huge sigh of relief when all these test results came back fine and the transplant surgery date was once again imminent.
Just as we were waiting for an official date from the team, the number of new Covid cases in Pittsburgh spiked as the second wave of infections overwhelmed the country. We were at a standstill once again as we waited for the numbers to go down. The holidays came and went without a transplant date and Eric continued to feel more and more like dirt.
Finally, at the end of December, six months after this whole thing started, we received a date! We were going to have the surgeries on January 28, 2021. We were so excited!
Dialysis
Just after the new year, we decided to take a short trip to Key Largo to visit a friend who had recently sailed his family there from St. Petersburg aboard a 50’ Huckins. Eric had worked on his boat before they left and was eager to see how they were faring, and we looked forward to a change of scenery as we were suffering from cabin fever, having been quarantined in our home like everyone else for nearly a year.
Although he was feeling horrible before we left, we went anyway and ended up spending four days there. When we came back, his weekly bloodwork showed his eGFR was a 4. He had to get dialysis, a procedure he had been trying so hard to avoid. But there was no way the doctor would allow him to get a transplant with a number that low. So on January 12, 2021, Eric went to the VA to get a Covid test before his temporary port was to be surgically implanted the following day. To his utter shock, he tested positive. Because some of his kidney disease symptoms overlapped with his Covid symptoms, and because he didn’t get the ‘normal’ Covid symptoms, he had no idea that he was infected and had been before we went to the Keys. He was definitely feeling worse than normal while we were down there, but we attributed it to his kidney disease. We were crushed. This meant that our date of January 28th was not going to happen. The waiting game continued.
The implantation of his port meant a hospital stay anyway because they needed to titrate his dialysis the first few times and monitor his numbers, but now with the positive Covid test, he had to spend ten days in a hospital room that was completely wrapped in plastic with minimal contact with nurses or staff. It was truly solitary confinement and it was agonizingly monotonous. Fortunately, he spent the majority of that time in medicated sleep, which was a relief since he hadn’t been sleeping well before that. Upon his release, we were told that he would need to test negative twice before they would re-schedule the surgery. It was depressing news because we knew that some people tested positive for months. Our spirits were at their lowest at this point. It seemed like we had been waiting a ridiculously long time to get a surgery date. After all the hoops I had jumped through getting poked, prodded, and scanned and all the waiting for Covid numbers to go down, we were being told again that we had to wait indefinitely longer. The uncertainty of not knowing was excruciating.
But the Coronavirus was a new virus and no one knew what to do about it concerning this transplant so around the beginning of February, after consultation with the CDC, the transplant team decided that since we had both had the virus (I had tested positive for antibodies after Eric’s positive test), we were given another new date of March 18, 2021.
At last, here we go!
We flew back to Pittsburgh on another cold Sunday, this time in March, and on a private, medical jet. The waiting game was over. It was time to give up my kidney. Our pre-op appointments went smoothly on Monday and Eric had his last dialysis session on Wednesday, the day before our surgery. Our spirits were high and we were beyond ready to get this thing done.
Upon arriving at the Pittsburgh VA Hospital at 6:30 am Thursday, March 18th, we were taken to adjoining pre-op rooms for our surgical preparations. In typical Eric style, he had the staff in laughter within 15 minutes by donning his chicken wig, one of the many wigs he had brought specifically for entertainment purposes. Those who don’t know my husband don’t know about his unorthodox sense of humor. He wore his afro wig to my 20th-year high school reunion and by the end of the night that wig had made it onto almost everyone’s heads! It ended up being the conversation piece of the evening.
The last thing I remember before surgery is talking to the anesthesiologist at 7:30 a.m. and the next thing I recall is waking up feeling drowsy and noticing that it was lunchtime. I drifted back to sleep relieved with the thought that it was over and that all that was left was to rest and heal. That was it. No more test results. No more waiting.
I woke again a few hours later and was told that Eric’s surgery had been successful and that he was recovering without incident. Once again, an upwelling of gratitude and relief filled me, knowing that we were both fine and that the surgery was behind us.
By 8:00 that evening I was up walking, albeit very slowly. I marveled at how good I felt, even though I had a considerable amount of abdominal pain. Eric and I were able to talk via our cell phones that night. The VA didn’t allow us to be on the same floor and neither one of us was in any condition to go visit the other. I could have left the hospital the day after surgery, but I didn’t feel comfortable being away from the liquid Tylenol that was administered through an IV, an absolute wonder drug, so I stayed until Saturday. Eric required a bit more monitoring but he got to the apartment on Tuesday, just five days after receiving his new kidney. It still blows my mind that our hospital stays were so short!
Eric grew up in Malvern, Pennsylvania so the nicest thing about having our surgeries in Pittsburgh was the city’s proximity to Eric’s mom Gloria, who still lives in Malvern, and his sister Lynn, who lives in Delaware. They were able to drive across the state to be our caregivers for the first week after surgery. It was nice to have Gloria’s mothering instincts around and Lynn was kind enough to take care of logistics and drive us to and from the hospital, instead of depending on VA transportation. They were our emotional support.
The worst thing about having the surgeries several states and an airplane ride away, aside from organizing caretakers to be there with us, was the inability to anticipate what clothes and things we might need to make us comfortable post-op. We did the best we could packing but we didn’t end up wearing a majority of what we brought so needless to say, we brought way too much stuff.
Home
On a chilly Wednesday morning the following week, March 31, we left for the airport at 9:00 a.m. The recovery in Pittsburgh was not as comfortable as we had hoped. Both of us experienced pain and nausea for several days after getting to the apartment and the urban industrial furniture was cold and hard and not ideal for recuperating. The weather, on the other hand, was a nice change from the Florida heat. The cooler temperatures made for pleasant walks around Point Park and the waterfront, which were only a couple blocks from where we stayed. On our last day in the city, we finally felt good enough to go explore so we slowly made our way through the Heinz museum. The highlight for me was seeing the original set of Mister Rogers’ neighborhood, one of my favorite TV shows as a kid.
The medical jet was much more crowded on the way back because we needed to include two medical attendants (one for each of us) as well as our friend Yvonne, who had flown up to relieve Gloria and Lynn as our caregiver for the second week. More bodies and luggage on the way back made it very cramped; not to mention there was no bathroom aboard and my bowels had been giving me a hard time since the surgery. So of course, as soon as the plane took off I had intestinal cramps that left me miserable. And sitting upright with my feet on my luggage was the least comfortable position for me because of the location of the two-inch incision. It was one of the longest two hours of my life. We arrived in Brooksville, Florida which is about an hour north of our house. As my intestinal bad luck would have it, as soon as I was near a bathroom at the airport, I couldn’t go. We got in the limo and finally arrived home around 1:00 pm. I could have cried I was so happy to be in our comfortable home and to use my own toilet!
The Lessons I learned
To recover from surgery with another person who has also had surgery, albeit a different surgery, is weird. We had similar experiences in some ways, such as having pain and nausea at the same time, but I did heal much more quickly than Eric. Each day I felt better and my insides felt less scrambled. His path was more like two steps forward, one step back, but always improving nonetheless.
It is simply surreal to know that a body part of mine now lives in my husband. The big joke is that he is more sensitive now thanks to that damn female kidney! I don’t mind, I prefer him this way.
We are just over two months post-transplant and life is pretty much back to normal. After five weeks, we both felt good enough to go back to work. Eric now has the motivation to return to yard projects he had put off because of his poor health. We can plan trips and attend events. But most importantly, he has life energy flowing through him again and he feels like doing things. He has no nausea now, tons of energy, and he can eat anything he wants. That makes it all worthwhile. The discomfort, the pain, the waiting, the fear, the insecurities all made this moment so much sweeter. The waiting game has finally ended.
An interesting thing we learned along the way about kidney transplants is that they don’t remove your dysfunctional kidneys during the surgery, so he still has his cystic kidneys and they still can cause pain and discomfort. He will wait and see how he feels in six months or so and if the left kidney, which he calls the ‘___sucker’, still gives him problems he will have a consult for a nephrectomy, the very same surgery, even the same side, that I had. He has a concoction of anti-rejection drugs to take, but other than that he will lead a perfectly normal life until my kidney wears out, maybe 20 years or so.
Today we found out his eGFR is a 53. That my kidney is working gangbusters in him is nothing short of a miracle.
This journey taught me so much about myself, our marriage, the medical establishment, and mortality, that I could fill a book. Sometimes I was too deep in my drama to see the silver lining. For instance, if we had had our surgeries on January 28th, as originally planned, we would have had to deal with frigidly cold, below-freezing temperatures. As it was, the weather was fabulous during the two and half weeks we were in Pittsburgh. Also, had we done it in January, Eric’s mother would not have been able to come as the Covid vaccines had not been out long enough for her to have been vaccinated. We would not have been able to have had any visitors in the hospital either. But by mid-March, the hospital was allowing one visitor apiece so when Gloria and Lynn arrived we were able to see them.
It was precisely those times when we got so frustrated that things weren’t going our way that I now realize the universe was working mysteriously to orchestrate the best possible scenario for us.
The most salient changes I experienced this past year were mental. I spent a lot of time tending to my garden of thoughts and weeded out many that no longer serve me. The synchronicity of the quarantine with our transplant journey offered me a lot of downtimes to contemplate. I carefully curated what I allowed into my life through reading inspiring books, watching only uplifting television, organizing my thoughts, and meditating daily. Without a doubt, this helped my inner mental landscape cope with the many unexpected twists and turns our journey held. It got easier to let that sh*t go when things didn’t turn out the way I wanted or anticipated.
Here are a few things I figured out:
#1 — It was much easier to manage my own expectations and preferences than to expect others to conform to my wishes.
#2 — It also became easier to trust the flow of divine timing, which allowed me to find the silver lining in every challenge.
#3 — Breathing and a quiet mind/meditation are as important as eating and sleeping.
#4 — Just BE. I enjoy many more moments now simply sitting in gratitude doing absolutely NOTHING.
Thank you for reading my story.
May all those needing a transplant receive one.
To read more of my blogs go to: https://www.heathergraeme.com/blog