The journey of Brian Craig: the search for a kidney donor
Editor’s Note: Today Vevay Media Group begins a two-part series on two members of the Switzerland County community who have been on the journey to have a kidney transplant. There are approximately 25,000 kidney transplants in the United States each year — but those statistics hit home when a small and united community like Switzerland County is made aware of two different cases going on at the same time. Currently there are 90,000 people in the U.S. awaiting a kidney transplant, according to donatelife.org.
This week, we tell the journey of Brian Craig of near Vevay and the efforts that are going on to find a donor match for a kidney transplant.
Next week, we’ll tell the story of Dan Mangold, who recently received a kidney transplant and is doing well in recovery.
It was the policy of Brian Craig’s employer that each employee would have an annual health screening.
It was during one of those yearly physicals — now a decade ago — that began Craig on a medical journey that now has him on the cusp of receiving a kidney transplant.
During that physical, doctors told Craig that he was suffering from a kidney disease known as Polycystic Kidney Disease. The disease causes clusters of cysts to develop primarily within the kidneys, causing the kidneys to enlarge and lose function over time. Cysts are noncancerous round sacs containing fluid. The cysts vary in size, and they can grow very large.
“I was actually diagnosed probably about 10 years ago,” Craig said. “That’s when we lived up in Indianapolis. It was during the health screening that they saw that my creatine level was creeping up, and they suggested that I follow up on it. Then I got a scan at that time. At that time it was not that far progressed, but it was the first time that it was diagnosed. They said it was a slow-progressing disease, and it may be something that I’d have to deal with in my 50s or 60s — but it’s gotten more aggressive here in the last few years.”
Craig said initially the diagnosis would lead him to be checked every 12-18 months, but once the disease began to progress, his visits to the nephrologist (a doctor specializing in kidney disease) accelerated to about once a month.
At the time of diagnosis, Craig said he had no symptoms whatsoever, so the health screening was his only warning.
“I would have never known about it,” he said. “Even to know, unless it was indicated in that blood draw. I still don’t have any pain or symptoms. The doctor said that a lot of people who are as far along as I am will have some pain because the cysts will bust or rupture, or because the kidneys are so enlarged — and mine are, as well. But the bright side is that I haven’t had any pain.”
The normal kidney for an adult is about the size of your fist.
Brian Craig’s kidneys are currently each about the size of a football — which pushes up into his chest cavity, giving less room for his lungs to operate, so he tires more quickly than before.
Craig said that talk of a transplant began a couple of years ago as his creatine levels continued to rise. Creatine is a chemical in the body that is used to supply energy to muscles, and is removed from the body by the kidneys. High levels of creatine tell doctors that the person’s kidneys may not be functioning well, because the chemical is not being removed
“I had an umbilical hernia about two years ago, and they had to do lab draws for that,” Craig said. “I hadn’t been to a nephrologist for probably a couple of years before that — that was kind of the schedule that I was getting it monitored — and when I went in for the hernia, they said that my creatine was alarmingly high. So I got back with the nephrologist, and that’s when things got a little more serious. They put me on medication and we started to talk about transplant — but it wasn’t quite there yet.”
Craig said that at that time he was at about 36-percent GFR (an index for kidney function). Since then the number has dropped to around 20-percent.
The search for a compatible kidney donor has spread throughout Switzerland County and other areas. Brian said that his best friend, Adam Cole, has taken on the role as lead advocate for the transplant, getting the word out and helping educate people about how they can see if they might be a potential match.
A Facebook page, “Brian Needs a Kidney,” currently has more than 400 followers, with that number growing every day.
Craig, himself, knows that there are efforts going on among his family and friends to see if they are compatible donors, but the process by nature keeps him somewhat in the dark.
“It’s had to tell unless people share information with me, because at IU they treat it as two different processes,” Craig said. “The donor’s side — like who’s signing up and where they’re at in their testing and all of that stuff — is intentionally shielded from me. I only know what people choose to share with me who are going through the donor process. I don’t ask because I don’t want to pry. I know what I’m asking for here. A couple of people have chosen to share with me where they are at and what’s going on. I know that I have a handful of people at least who are signed up. I’ve had my sister and some cousins and a handful of friends who have signed up — and I know that at least a couple of them are progressing through to the point where they are getting their blood tested.”
Craig said that the goal is to get to transplant before you get to the point where you need to be on dialysis,” Craig said. “But dialysis would be when my GFR gets down to 14- or 15-percent. Right now I’m at 20, so the goal right now is to maintain where I am until I can get a transplant.”
Craig said that the GFR level is being aided by medications that are designed to slow the progression and help a patient maintain the function that they currently have.
As he awaits his kidney transplant, daily life for Brian and the Craig family — wife Julie and children Gavin, Aubrey, Avery and Ashton — is as normal as possible.
Brian is still working. His company, GAI Consultants, an engineering consulting firm that leases Craig an office at the Switzerland County TEC Center in Vevay.
“I still work full time,” he said. “I still take the kids to soccer practice and basketball practice and all of that stuff. It hasn’t really affected my daily routine yet. I don’t really think it will until that time when I would have to go on dialysis. At that point you’re either doing it at home or going to a center and doing it. I don’t actually know a whole lot about that process or how often it would have to be. Their goal is to transplant before I get to that point, so they haven’t spent a lot of time talking with me about that — but right now my routine isn’t really altered.”
Brian said that his nephrologist is affiliated with the University of Cincinnati; but he has chosen to get a referral to the Indiana University Medical Center, who would actually do the transplant.
His decision on IU comes from another critical moment in the life of the Craig family, as son Gavin was treated at IU for a cancer a few years ago, and that experience gives Brian a comfort level with the facility.
Brian said that he is on the list for a deceased donor if a match would happen, a list that he was put on in January; but he says that the preference for doctors is to find a living donor before he got so far up the list that they had to turn to a deceased donor.
Craig said that he still tries to stay active, but he admits to getting out of breath because his enlarged lungs are taking up so much space.
Craig — like other people in similar situations along with people who have already received an organ donation — as well as others who see organ donation as an important consideration; believes that it is very important for people to consider organ donation, and to make sure that loved ones know their decision.
Want to check into the process?
Go to https://iuhealth.org/find-medical-services/living-kiney-donation.