Harold L. Gilkey, better known as “Bo,” is a kidney transplant recipient who has a warning for the African-American community… “It is imperative that you get your kidneys checked!” The 63-year-old, divorced, father of three grown children had a failing kidney and didn’t know it. The few minor hints he did receive were just chalked up to getting older.
Bo has been athletic for most of his entire life. While in high school he received a full ride football scholarship to Central State University in Wilberforce, Ohio. He also played pro-football for a few years with the Buffalo Bills and Detroit Lions.
After working for the Michigan Department of Correction at Jackson Facility for 29 years as Assistant Deputy Warden, Bo threw in the towel five years ago. Up until recently, he worked security for the Phoenix Suns NBA basketball team. However, the COVID-19 pandemic put the brakes on professional basketball games.
Six years ago, Bo was gifted with a kidney that he received from his older sister, Lynn. Even though a few years have passed, when thinking about his ordeal and about the goodness of God, the grandfather of four still becomes emotional.
Bo openly shares with 50BOLD, his harrowing journey from chronic kidney disease, to dialysis, to finally receiving a transplant. He also discusses the dark emotionals that chronic kidney sufferers often go through.
50BOLD: Tell me a little about your childhood, family life.
Bo: I was born in small town in Oklahoma called Pawhuska. My family ended up moving to Michigan when I was about eight years old. I stayed in Michigan until I graduated from college and moved to Atlanta. I have two siblings, an older and younger sister.
50BOLD: You were an athlete in college, played pro-football, continuously worked out; can you walk me through the beginnings of your kidney failure.
Bo: Kidney failure is a silent killer. I began feeling a little different over time. I started having swelling in my ankles. When I was first diagnosed with end-stage renal failure, I was already in my 50s.
My kidney was basically so scarred that it started losing its function. In order to excrete all of the toxins out of my body, I had to go on dialysis.
50BOLD: What causes scarring of the kidney? Is it your diet or your lifestyle?
Bo: You know with Black folks if it’s not diabetes, it’s high blood pressure or lupus. A lot of us have high blood pressure. Once you find out you have it, you have to take meds, and before many of us know it, the kidneys might be affected.
50BOLD: When you got diagnosed with the end-stage of kidney failure what does that really mean?
Bo: It is the last stage of it all.
50BOLD: Oh, damn, you got diagnosed during the final stage of kidney failure?
Bo: I got diagnosed when I was at stage 3 of my renal disease and it shot to the end-stage in less than a year.
50BOLD: After stage 3, comes end-stage?
Bo: No, you go to stage 4, then stage 5 which is called end-stage.
50BOLD: So, there is a stage 1 and 2?
Bo: Yep. A lot of people don’t get checked because you don’t want to know what is going on with your body. For me, I don’t know when I actually developed renal disease. I went into my doctor’s office saying, “Hey, man something’s a little different.”
Let me give you an example, when I went to the bathroom my urine was foamy.
50BOLD: Foamy?
Bo: Yeah, you would have thought I had put dishwashing soap in my urine.
50BOLD: That’s some analogy, wow!
Bo: My ankles also started swelling. I would take my socks off and see a ring around my ankles. Another sign! Since there was no pain around my ankles, I just I moved past it because it doesn’t slow you down. Anyway, I started seeing so much foam in my urine that my doctor ran a blood test and it was discovered that I also had blood in my urine. It’s not the kind of blood where you see red; the protein from the blood is in your urine.
My doctor then began checking me for other issues. When I thought I was having back pain, I thought maybe I lifted too much; issues were actually going on with my kidneys.
Blood pressure seems out of whack all of the time. The majority of kidney patients have a hard time urinating. At some point you can actually stop peeing.
50BOLD: And then what happens?
Bo: That’s when you have to go on dialysis. The bladder will be full, you feel like you have to go, but nothing happens.
50BOLD: What are some other telltale signs of kidney damage?
Bo: Now, I didn’t stop peeing. I then began seeing swelling around my eyes. I thought well, I’m getting older, maybe this is just part of aging. All of a sudden my entire body began to swell. I would poke my groin or legs and leave an indentation.
It was at this point I went to see a nephrologist, who specializes in kidney issues. I began taking medication to try and slow the process. One thing about your kidneys, they don’t heal.
My high blood pressure was forcing blood through my kidneys so hard that it was scarring my kidneys. Sometimes my blood pressure went up to 190 over 100. I never felt anything, so I went on as usual.
50BOLD: So you got diagnosed at stage 3. Is that when you started taking mediation and when did you go on dialysis?
Bo: I was 53 when I started taking medication for my kidneys. You go on blood pressure pills. Once the kidney is scarred, however, it doesn’t heal. You try to lessen the pressure on your kidneys in hopes that they will function longer.
50BOLD: How long after the medication did you go on dialysis?
Bo: I found out in April that I was in stage 4 of renal failure, and then started dialysis in August.
50BOLD: How long were you on dialysis?
Bo: I was on dialysis for about 6 months. Once you get to end-stage you only have but so much time.
50BOLD: Really!
Bo: Oh, yeah. End-stage means end-stage. You are either going to be on dialysis for life or you need a kidney. My problem was that they put me on a waiting list. It is so hard because people of color just don’t sign up to donate a kidney.
When I got to August, I was at end-stage and didn’t have much time left to live. I had to wait for a cadaver’s kidney.
50BOLD: I have no words….
Bo: At that point in time, there was a lot going on in my life. I was in the middle of a divorce; my wife decided she wanted to do something else.
50BOLD: You were divorcing through all of the health issues?
Bo: Yeah. Everything happened so quickly. I was trying to deal with the divorce. Then finding out I needed a kidney. I went to the best hospitals, I had great health insurance, and I worked for the government so I had wonderful benefits.
I tried to go through the Cleveland Clinic in Ohio to sign up for a kidney and be placed on a list. There was, however, a five-year wait for a cadaver’s kidney. I just didn’t have all that time.
I had to figure out what to do! It’s hard to just ask people for something so great as a kidney. At a certain point in time, you just don’t have any other choice. I needed to get a kidney soon or go on dialysis and I feel dialysis will kill you.
50BOLD: It will?
Bo: Oh, yeah. Most people die because they can’t get a kidney. I am a big guy, 6’4,” with not a lot of body fat. I had muscle. The dialysis was hard on me. When I got on dialysis, I didn’t have that cushion of fat to help me go through it. I experienced extreme pain and cramping. I’d go from 6:00 in the morning to until 2:00 in the afternoon.
50BOLD: That many hours?
Bo: I had dialysis three times a week and was dealing with it all by myself. All my kids are grown. I didn’t want to ask my babies for their kidney because you never know. They might have issues with their kidneys someday. I was trying to figure what I was going to do. Most people, who have a little money, go overseas to try and find a kidney. It’s illegal here in America. So I would have to fly over and pay someone for a kidney. People overseas will sell you their kidney.
50BOLD: Interesting!
Bo: Oh, yeah. In third world countries, once you pay a person for their kidney, your new kidney will last for years. It’s mind blowing! People will sell their kidney for ten thousand dollars. Most of the money will go to the surgeon over there and then they pay the donor. Some people don’t have a choice. They either get a kidney or they are going to die. As I was getting closer, I had to consider that option.
I went through the dialysis as best I could, but it got so painful. I was given a choice of having dialysis at home or at a clinic. I went the clinic route because a home has to be so sterile all the time. After a while, being on dialysis weakened me. I’d go in for one day and that whole day would be shot.
Then the next day I’d feel like myself because I got all of that toxic stuff out of me. I’d feel good and then I’d need dialysis again; the entire process was really trying for me. Going through dialysis for many patients is an emotionally dark, gloomy, and very depressing time. You feel as if there is no light at the end of a very dark tunnel. A lot of people really don’t understand what kidney patients have to deal with. I still looked healthy so people didn’t understand what I was going through with my many health issues. I was also told that the chances of my getting a kidney were slim because of my age. When kidneys are received, oftentimes, they are given to younger recipients who have a chance to live longer. The older you are, the less chance you have of receiving a kidney and no one wants to hear this! It is all such an emotional journey of oftentimes despair.
50BOLD: Oh what a sad predicament!
Bo: As I aged, the chances of my getting a kidney seemed next to none. I’d even go on the national list and nothing! It was Christmas time, I was talking to my family members about everything I was experiencing. One day, my older sister Lynn called and asked me what I wanted for my birthday. She said, “I think I have a gift for you.” I said, “What is it?” Lynn said, “I have a kidney for you.” She had done the testing and it came back a match for me!
50BOLD: What a miraculous gift!
Bo: Lynn blessed me with a kidney. A donor kidney has to be a perfect match. I did have people who tried to give me a kidney but theirs was not a fit for me.
I had a great team of doctors at Michigan Medicine, The University of Michigan hospital. On December 19, 2014, I had the transplant. It went so smoothly for me. I had the surgery on Friday and by Monday, I was able to stand up, walk, and get around.
It was all such a miracle. Doctors couldn’t believe how I responded so fast with the kidney. I actually went home before Lynn. She was still in the hospital. I went home on December 23; she was released on Christmas day.
50BOLD: A miracle indeed!
Bo: It was such a miracle. I tell you, I get emotional just thinking about how good God is to me!
50BOLD: How is your sister Lynn doing now?
Bo: Lynn is good, but one thing, she developed high blood pressure but it is under control. Other than the hypertension, she is doing fine. She is healthy and on blood pressure medication.
50BOLD: Did you have any complications after the transplant?
Bo: I did have complications because the body is always trying to destroy the new kidney. It’s a foreign object in your body and your white blood cells are trying to fight it. What they have to do now is weaken your immune system. When you have a compromised immune system, the white blood cells keep trying to kill that kidney.
50BOLD: How do you weaken an immune system?
Bo: Medication. The medication is strong and you have to deal with the adverse effects of the meds. Especially when you get the new kidney, the white blood cells are all out in attack. They are trying to kill it. You get a rejection.
I retired and moved to Arizona. Before I could get out of the moving truck, I went into rejection mode where my organ shut down. My doctor put me in the hospital for a month. I was able to get into the Cleveland Clinic; they saved my life.
I had another rejection a year after the first because my immune system was so low; it left me susceptible to getting other illnesses. With my immune system compromised, I went through the full blunt of it. I wound up getting a serious case of pneumonia and pulled through. Right now, I’ve been blessed. My weight is back up. I continue to work out. I’m doing pretty good.
50BOLD: I was reading where a kidney transplant costs over $400,000, is this true?
Bo: That’s cheap! If you don’t have good insurance, people are not aware of what it costs. I was blessed to have great insurance because I worked at the prison which was a state job with excellent benefits. I didn’t have to pay for my medication. The most I paid out-of-pocket was about $8,000.00 for the hospital stay.
50BOLD: Now, you are fighting with the insurance company concerning the cost of your medication.
Bo: The insurance company wants to find a cheaper manufacturer for a drug I am taking. My new plan, which changed at the beginning of this year, does not cover the expensive drug. Now, my insurer does not want to pay for my rejection meds. One medication costs around $1,300.00.
50BOLD: What?
Bo: And the other pills I am taking costs $2,200.00.
50BOLD: You are taking two rejection medications?
Bo: Yes, I have to take the right meds that control the kinds of problems I am experiencing in my body.
50BOLD: So what’s going to happen now?
Bo: I’m resilient. I’m an Omega Psi Phi, a Que. I know how to persevere. I have to take these meds every single day. They want to give me the generic version of the drugs or some other medications, but these don’t work for me. The drugs allowed me to lead a normal life; I’m not trying to stop from doing this! They are trying to force me off the drugs. I’m still fighting a battle. If push comes to shove, I will have to go to Mexico or Canada to find the meds at a cheaper price. You see, I was getting the drugs for free with my other plan. A lot of transplant recipients have to do battle every single day for their specific drugs as well. I just thank God that I am breathing and living.
50BOLD: Has your family been a major source of support during your road to recovery?
Bo: Yes. Of course, my sister Lynn saved my life. She blessed me. My mom has been by my side. My kids have been a pillar of strength.
I’m involved with the kidney foundation, doing marches and I talk to people. A lot of people who are in my situation have it a lot worse than me. I was in good shape, when this all went down, and my body responded quickly.
50BOLD: So you are in touch with other kidney transplant recipients?
Bo: Oh, yes! I feel I have to let people know how to prepare, what to look for and how to deal with it all. Dealing with dialysis, as I mentioned, is emotionally taxing. You can’t eat. You are in so much pain. You get only one day to feel better after dialysis and then, you have to do it all over again.
The dialysis robs your body of all the stuff that it normally needs. Dialysis cleans the blood so well that when it’s pumped back into the body, folks can experience side effects like cramping; they might even lose toenails!
50BOLD: No, stop!
Bo: I’m serious. The body can swell up so badly after dialysis and this can result in brittle finger and toenails. I’ve had my toenails removed. You can also develop oral health issues like tooth decay and gum disease. Dialysis can make teeth so weak that eating a potato chip can result in the loss of a tooth.
Dialysis ain’t no joke. I’ve lost a lot of teeth. Constant diarrhea is yet another dialysis issue. The body just can’t deal with it all! But once you’re given a kidney transplant, you begin to feel better and able to deal with some of the minor issues.
50BOLD: Do you have any advice for our 50BOLD audience on how to prevent kidney dysfunction?
Bo: Diet! I can’t express this enough. We have to watch what we put in our bodies. We eat too much salt, too much sugar. Right now, I cut out salt and sugar. I went from weighing 258 pounds down to 210.
I lost weight on purpose. I eat more fruits and vegetables. I don’t eat a lot of red meat. I love barbeque and all of that, and maybe eat it once a year. I use pink Himalayan salt because of the minerals it contains. I drink plenty of water. I’m juicing a lot. And above all, exercise is key. I would advise everyone to incorporate some form of exercise into their lives.
50BOLD: What kind of exercise do you do?
Bo: I typically work out about three or four times a week at the gym. Now, I work out at home because of the pandemic.
50BOLD: How would you like to be remembered?
Bo: I’d like to be remembered as someone who loved others and truly cared about people’s well being.
50BOLD: God bless you Bo. You are truly a survivor!
Kidney disease just the facts
Early kidney disease has no symptoms. If left undetected, it can progress to kidney failure with little or no warning. Due to high rates of diabetes, high blood pressure and heart disease, African Americans have an increased risk of developing kidney failure. According to the National Institute of Diabetes and Digestive and Kidney Diseases, Blacks constitute about 13 percent of the U.S. Population but account for more than 35% of all patients in the U.S. receiving dialysis for kidney failure. Blacks also suffer from kidney failure at a significantly higher rate than Caucasians – more than 3 times higher.
Get tested for kidney disease
Not all African Americans will get kidney disease. And not everyone who has diabetes, high blood pressure, heart disease, older age, or a family history of kidney disease will get it. But if you have any of these risk factors, you should:
Get tested for kidney disease. There are two simple tests for kidney disease:
A simple urine test checks to see if you have protein in your urine. Your body needs protein. But it should be in the blood, not the urine. Having a small amount of protein in your urine may mean that your kidneys are not filtering your blood well enough. Having protein in your urine is called “Albuminuria.” This can be a sign of early kidney disease.
A simple blood test for GFR (glomerular filtration rate) tells you how well your kidneys are working. Your GFR is estimated for a waste product called creatinine. Your creatinine number is used in a math formula along with your age, race, and gender to find your GFR.
Get tested for diabetes, high blood pressure, and heart disease. If you don’t know whether you have diabetes, high blood pressure, or heart disease, ask your healthcare provider. It’s important to find out.
Live a healthy lifestyle. Be sure to exercise, eat healthy, lose weight if needed, avoid smoking, and limit alcohol. A healthy lifestyle can keep you from getting kidney disease. It can also help slow or stop kidney disease from getting worse.
