2.16.2019 - It’s time to update my story as it been almost 7 months since my family and I published Dylan’s Journey, and so much has happened.
If you’ve been keeping up with our Facebook posts, you know that I started dialysis shortly after we published our page in the summer of 2018. First at home and then in the local Davita Dialysis center. 4 hours, 3 days a week sitting in a chair connected to the dialysis machine helped improve my physical condition, but put a strain on my ability to work full-time, care for my family, and enjoy free time with family and friends.
Our search for a living donor went far beyond just our page. We painted messages on the back windows of 5 family vehicles, and people stopped us to take pictures in parking lots, places of business, and even at traffic lights. We had cards printed up with my need for a donor and passed them out whenever possible. All our messages asked people to call Yale New Haven Transplant Center and offer help to “Dylan”. The phone at YNHTC rang off the hook. The number of people who came forward to help and/or donate was astonishing. Family, friends, and strangers alike came forward to get tested. It all happened pretty quickly due to the viral nature of social media. Within a month (July 24 to August 24) we heard that there was a match.
That match was my sister Darcie. It made sense to my immediate family, but we stayed quiet to allow her to continue the testing process in private and consider this difficult decision on her own. The last step in the testing processes was a donor clinic at Yale. For Darcie this was the last Friday in September. Donors learn about the process and go through a series of one on one meetings and evaluations. The information from that day is reviewed by a panel at Yale and donors are approved. It was in mid-October while Darcie was hiking in Havasupai in the Grand Canyon, that our story took a dramatic and fortunate turn. She got the call that she was approved as Dylan’s donor.
Late October, Yale reached out to me and Darcie to request our inclusion in a clinical trial for kidney transplants. It turned out that Darcie is not just my match, but she’s a “sibling zero mismatch”, meaning we match on all 6 DNA strands that are tested, and the subsets of those strands. Clones I guess. This meant we were a perfect couple for inclusion in the 3rd phase of the trial. The trial, sponsored by Medeor Therapeutics, involves harvesting Stem Cells from the donor, which are then infused into the recipient post-transplant. The goal of the trial is to have Darcie’s stem cells “trick” my immune system into thinking that my new kidney from Darcie is “okay”. If successful I will be weaned off anti-rejection medications after about 1 year. Pretty incredible. This news and the opportunity to participate were the best things to happen to me since I was diagnosed in February 2017. After many discussions and schedule planning, Darcie and I signed consent forms to participate in the trial the Friday before Thanksgiving.
So your prayers and ours had been answered and now science would kick in. Darcie had to visit YNHH in mid-December for 2 days for a process called Apheresis, where some 10 million of her stem cells would be harvested and sent to Medeor to be frozen and await the transplant. The transplant surgeries were scheduled for Monday February 4th at 7:30 am eastern time. We spent Christmas and New Year’s preparing for February 4 and the month of January flashed by in a minute.
That Monday morning in early February, we were up early and ready to check in at YNHH at 5:30 am. Apprehension built and emotions spilled those next 2 hours but the team of surgeons, anesthesiologists and nurses at Yale were incredible and reassured the two us all through the procedure. By 2:00 pm we were in recovery, Darcie down one kidney and me with a new lease on life. Recovery came a little slower for me than Darcie but we were both home by the end of the week. Family members from Danbury and others who flew in from the west coast, where there to help with the small stuff and we were ready to take the next steps on Dylan’s Journey.
I’ve went through several days of radiation treatment to prepare for the stem cell infusion, which happened 2.15.2019. We’ve now completed the first follow-up appointments. So now Darcie heads home to San Diego and I’ll continue with my recovery, which will take at least 3 months with two-a-week visits to Yale for follow up and clinical trial commitments.
Thank you all for continuing to follow my story on Facebook and look for future posts as I’ll continue to update all on my recovery to full health.
Dylan’s fight for life:
Being a dad is tough, but living with kidney disease has proven to be just as tough. I’ll never forget the day in 2017 when my doctor told me that my kidneys were failing due to IGA Nephropathy and that I would eventually need a transplant or dialysis to live. He told me that my kidneys were functioning at 59% and that people my age should have kidneys that are functioning at 100%. At that moment it felt like life stopped, but reality quickly sinks in, life keeps going, and every minute since then my kidneys have deteriorated. To tell my full story of how we came to this diagnosis we have to hit the rewind button and it’ll take us back to Fall of 2016.
In October 2016 our cat got out so my wife and I spent the day searching for him in the woods behind our house. Later that night we located him in a drain pipe that led into the woods from our condos. Needless to say we had planted ourselves in the brush in order to lure him out. Later that night I located several ticks on myself. Within the next few days I started to notice several, random symptoms that had appeared out of the blue; nausea and vomiting, severe drowsiness, and terrible leg cramping. I thought to myself that perhaps I had contracted Lyme’s Disease from one of the ticks and decided to call my doctor. My doctor ordered blood work which ended up coming back negative for Lyme’s Disease, but had shown abnormal kidney function. A follow-up appointment and more bloodwork confirmed that my kidneys indeed were not functioning properly, which warranted a referral to a Nephrologist - a kidney doctor.
My Nephrologist ordered further bloodwork to see exactly where my kidney function was standing. From the time of my first blood draw in October to my blood draw with the Nephrologist in January, my function had dropped down to 52%. At this point because the numbers were changing in an unfavorable direction he ordered a biopsy to see what was going on. He explained that during the biopsy they would take a small tissue sample of my kidney to examine it further. The result of the biopsy came in February of 2017 which confirmed my diagnosis of IGA Nephropathy.
Many of you are probably wondering what IGA Nephropathy actually is. To keep it short and sweet it is an autoimmune disorder that is also known as Berger’s Disease. This disease causes my body to produce antibodies that fight my own kidneys. As a result my kidneys become inflamed which hampers their ability to filter waste from my blood. This disease progresses slowly over many years which is why we never detected it sooner. Additionally, there are not any major symptoms that occur on the outside that would have made me think to see a doctor. Unfortunately, there is no cure for IGA Nephropathy, only certain medications to slow its course.
Medications were prescribed by my Nephrologist to help treat me. For seven months the course of treatment seemed to be keeping my numbers stable. Sure, I had all kinds of side effects that were unpleasant, but hey at least my kidney inflammation had seemed to “cool down” as my doctor would say. Unfortunately, fast forward to September of 2017, this stability changed. Each month my “numbers” had been monitored with both bloodwork and visits to my nephrologist and in September I had received the frightening news that my function had suddenly dropped down to 39%. This was scary news to me and my family! My numbers had remained so stable that I was optimistic that I wasn’t going to need to worry about a transplant or dialysis for many years to come. With this sudden decrease in function my nephrologist suggested I seek a second opinion from Columbia University in New York.
To seek a second opinion I needed to have a second kidney biopsy. Columbia University was the recommended hospital due to their extensive studies of my disease. I had also lucked out in the sense that I was able to receive a third opinion from a visiting specialist from Italy. The intent of this visit was to see if there was some sort of alternate treatment available for my condition. Additionally, with this University being one of the biggest in the country to study my disease, I had hopes of getting into a clinical trial. We received both good and bad news. The good news was that my family and I were better educated about IGA Nephropathy. The doctor there was able to really break down exactly how my body was fighting my kidneys. However, the bad news was that I had the most aggressive form of this disease and in turn was ineligible to participate in any clinical studies. This news was disheartening but despite the negative impact I was feeling I knew that I needed to remain hopeful both for myself and for my family.
From this point on my local nephrologist continued to monitor my blood work closely each month with visits that brought both ups and downs. Some of these visits required a trip to the emergency room, a follow up with another specialist, and multiple medication changes. Each change of medication brought on something new and different. Even with all of these changes my numbers continued to decrease to the lower 30’s and then into the 20’s range. Again my nephrologist readjusted my medications in hopes of some positive change and for 4 months my kidney function remained stable. Although with kidneys functioning in the 20th percentile range isn’t ideal, the fact that they hadn’t dropped further had been a nice change- especially because this was around the time that my wife and I were preparing for the arrival of our second child. At this time there was nothing worse than the feeling of us expecting a new baby with the possibility of me needing to start dialysis or need a transplant at the exact same time.
In May 2018 we welcomed Addison Grace McBeth into our lives. We now have two healthy, beautiful children and it is the positivity of this that keeps my mind clear and focused. This is what has helped me strive to stay both strong, well as strong as I can be, and positive for my family. My children and my wife have kept me going and help me forget that even though my kidneys are failing me I still have a purpose to go on. What has also helped is that I have an incredible network of family and friends who have been supportive of me every step of the way. As stated with my posts on my Dylan’s Journey page my kidney function is now down to 14% and will continue to be monitored weekly by my nephrologist. I am currently active on the transplant list and am still in search of a living donor who will prove to be a match.
