A Gift Like No OtherFriday, September 07, 2012
Type 1 diabetes veteran Michael Burke received a donated kidney from his brother Tommy last year, and he wants to repay the wonderful gift bestowed upon him by both informing people about kidney disease and transplantation as well as help other people with diabetes through their battles with diabetes.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
When Michael Burke (pictured here) was diagnosed with diabetes-related kidney disease back in 2001 his nephrologist was honest with him in terms of what to expect about the future.
His specialist, Melanie Hoenig, MD, from the Joslin Diabetes Center in Boston told him he could expect the disease to progress slowly, so they would work together as a team in order to keep the progression slow. However, she cautioned Burke, it was likely he would need a kidney transplant in the future.
By all accounts, Burke had been proactive with his diabetes management and he didn’t seemingly feel any health effects related to his kidney disease, despite the fact his kidneys were beginning to shut down on him. The diabetes veteran who had been diagnosed at 16 back in 1983 had been on a pump for a number of years, watched his diet, and saw his endocrinologist on a regular basis; yet the development of kidney disease had been one more comorbidity he had to deal with on his list of diabetes-related health issues. Over the years, Burke’s type 1 diabetes had caused him to have eye surgery and a heart bypass, so he took the news of kidney disease relatively well. He liked the idea of working with Dr. Hoenig to slow down the kidney disease and he filed away the notion of a kidney transplant for being years away.
During this time, Burke went to see Dr. Hoenig every three months and remained compliant with his medicines. In 2010, Dr. Hoenig told Burke it was time to refer him to a transplant nephrologist.
Unlike the first appointment when he was diagnosed with kidney disease, Burke was now faced with a new reality just nine years later. He remembers the appointment with the transplant nephrologist being somewhat surreal. He couldn’t believe he was now in need of a transplant in order to live.
Fortunately, Burke’s brother, Tommy, was a very good match and he donated one of his kidneys. The Burke brothers underwent the surgery together in June of 2011. The transplant was a success, and the gift bestowed to Burke has transformed his life. He in turn, wants to help others with diabetes and kidney disease, and he is in the process of developing a diabetes coaching business.
DiabetesCare.net talked with Burke about his kidney disease, the gift of receiving his transplant, and the diabetes coaching business he wants to launch.
DiabetesCare.net: Can you provide an overview of your kidney disease, including what it was exactly and what your treatment medications for it were?
Burke: My kidney disease was brought on by my diabetes. Back in 2001, when I was being treated by my endocrinologist, Alan Moses, MD, who was Chief of Medicine at the time at Joslin, said in a casual manner, ‘I think it’s time to bring in a kidney specialist into our team.’ He didn’t say there was anything wrong at that time, he just wanted to be prepared as many people with diabetes go down this road where eventually they develop kidney disease.
I started seeing Dr. Hoenig. Over the course of the next several years, she followed me. My kidney function did start to decline, but Dr. Hoenig was there to help counsel me and try to stave off the need for a transplant for as long as possible.
She said, ‘we are going to try and manage this for as long as we possibly can, and it may not be for another five, 10, or 20 years, but there is a good possibility you will need a kidney transplant.’
Kidney disease is a very slow, progressive disease. It is not like you wake up one day you have kidney disease, and the next day you have to go for a transplant. You have a lot of time to prepare. Trying to slow down the disease is done through the management of blood pressure medications and a low protein and potassium diet.
In terms of the medications, I’ve pretty much tried everything available. I was on ACE inhibitors, ARBs, and we used calcium channel blockers at one point. Sometimes they worked great; sometimes not so much. There was one medication, Diovan that was on the one hand effective in protecting my kidney, but on the other it pushed up my creatinine, which is a measure of kidney function. Unfortunately, I had to stop using that.
DiabetesCare.net: What were the circumstances that lead to the decision to get the transplant?
Burke: As I had mentioned earlier one of the signs of kidney function is the creatinine levels, and over the years, as my levels crept up, Dr. Hoenig said, ‘when it gets to 4.0, that is when we will talk about transplantation, and I will refer you to a transplant nephrologist.’
There were a couple of times where it did go up to 4.0, but she was conservative and wanted to see if that 4.0 level remained consistent. Each time that happened, the level dropped. It was likely a change in medication that helped bring the level down.
It wasn’t until 2010 when the level of 4.0 and above became more consistent in my readings. My kidney function had also dropped to about 15 percent. Dr. Hoenig told me that if it went down to 10 percent, she would have recommended dialysis. We were trying to get the transplant before dialysis, so in March of that year, she referred me to the transplant team.
There was a lot of research stating that the success of the new organ transplanted five years out and longer is greater for a person who has not been on dialysis. That was part of the impetus to getting it done sooner rather than later.
DiabetesCare.net: Can you take me through that appointment when you met with the transplant nephrologist?
Burke: Although I knew this day was coming, it was a surreal appointment. I was physically there, but mentally I had checked out. It was very overwhelming. The transplant nephrologist, Martha Pavlakis, MD, Medical Director, Kidney and Pancreas Transplantation, Beth Israel Deaconess Medical Center, in Boston explained to me that I needed the transplant to live.
By the time I left the doctor’s office that afternoon, I was listed on the National Kidney Registry. ?
DiabetesCare.net: Did the transplant nephrologist give you any type of timeline for when you should have the transplant?
Burke: I had a year maybe two years before it was ultimately needed. She said it was good to be referred at that time rather than being referred when the need was immediate. This way, I was able to work my way up the transplant list.
DiabetesCare.net: At this point, your creatinine levels are consistently at 4.0 and above and your kidney function is down to 15 percent, did you notice any difference in how you felt day-to-day or any medical side effects?
Burke: Even up until the day of the transplant surgery, I was sitting there and I didn’t feel sick. Obviously I knew my kidneys were shutting down, but you don’t feel sick because it is such a slow disease. This phenomenon of not feeling sick was something I have talked to other people with kidney disease about.
However, when I look back on it, there was a feeling of fatigue over the course of years. There was also a definite intolerance to temperatures. For example, the week before the transplant, it was 90 degrees out and I was walking around in jeans and sweatshirt—and I was still feeling cold.
DiabetesCare.net: In your blog you refer to Tommy (pictured left) as providing the gift of one of his kidneys for you. Can you tell us about Tommy?
Burke: Tommy is my brother, and he is five years younger than me. When it was determined that I needed the transplant, he stepped up and started the testing process to see if he was a match.
In that first appointment with the transplant team, they discuss the process of getting a donor, and they talk about approaching your family first. It’s not always 100 percent, but blood relatives offer a better chance to be a match. When that is not possible or you have exhausted your immediate family, you start to look outside to extended family, friends, and even strangers.
I believe there are six markers or antigens that are used to determine if someone is a candidate or a match to you. The higher the number the better chance the transplant would be successful. It was explained to me, if someone was a 1 out of 5 antigen match, they really could not be a donor for me. However, in the last couple of years they have been able to manipulate a lot of those antigens so that they can use these donors.
Still, my brother ended up being a five out of six match to me.
DiabetesCare.net: How does it feel to be given this gift of a donated kidney from your brother?
Burke: It is definitely emotional, and I can’t even begin to adequately say thank you to him. He really gave me a chance to be able to talk with you today, as well as being able to see what the rest of my life looks like because I’m living each day. You cannot put a price on that, and there are no words that are sufficient enough to express what this means to me.
Tommy was in pretty good shape going into the surgery. He ran the Boston Marathon about a month before the transplant surgery. As part of the race, he raised money for Joslin too. He raised nearly $10,000.
DiabetesCare.net: What was it like preoperatively on the day of the surgery, and what can you recollect in the first days after you had the surgery?
Burke: The morning of the surgery, they asked for the two of us to be there very early. They took Tommy in one room and me in another. They began the preop procedures like starting IVs and getting us relaxed for surgery.
As I was trying to relax myself, I’m was told Tommy was being wheeled into surgery. Not too soon after that, they asked if I was ready, and I said, ‘let’s do it!’
In the recovery room after the surgery, I had virtually no pain. I remember I had this feeling of fatigue and being tired prior to the surgery, and it was almost as if there was a switch they hit after they performed the surgery. The nurses couldn’t believe it. I was brighter, more animated, and I felt more alive.
They didn’t put Tommy and I in the same room; they had us on opposite ends of the hospital floor. One of the reasons for that was to get us up and walking to visit one another. We had a little contest going as to who would get up and see the other person first. I remember it was about 3am, and I was talking to one of my nurses and I had an IV and I asked if it was mobile. She said they could make it mobile, but just before I was getting ready to get up and see my brother, he popped into my room.
DiabetesCare.net: How long is the transplant procedure?
Burke: I was in surgery for approximately four or five hours, and there is a lot of prep, but the actually surgery itself is about 1 ½ to 2 hours.
DiabetesCare.net: Post-op, did they have you on any medications?
Burke: In terms of medications, the transplant medicines were Prograf and CellCept. I was also on Prednisone during the time I was in the hospital. I’m still on Prograf and CellCept now.
For my kidneys, I’m taking just a blood pressure medication, Toprol. Overall, the medications I’m on today are significantly less than what I was on a little over a year ago, before the transplant.
DiabetesCare.net: One year later, how has life been post kidney transplant?
Kidney Disease and Transplant Resources
To find out more about kidney disease, transplantation, or becoming a donor, readers can go to any of these websites:
New England Organ Bank
Burke: Life has been fantastic! The health of my kidney has been great—based on the blood work and a small biopsy I had.
DiabetesCare.net: What are some of the things you wished more people knew about kidney transplantation?
Burke: Just the fact that more lives could be saved if more people donated. I heard a story not too long ago where a customer at a grocery store had befriended a cashier. The customer found out the cashier needed a kidney, and they ended up as a match. The customer donated a kidney to the cashier.
You hear these stories, and yet, you wish you could hear more of them. The more people know about kidney disease and kidney transplantation, and the fact that it can extend peoples’ lives mgith influence more people to look into it. And you never know if it is going to be a family member, a friend of yours, or who might be stricken with kidney disease.
You don’t want to be left on the sidelines and say I wish I could do something. You can do something! You can register yourself as an organ donor.
DiabetesCare.net: Are you involved in any kidney or diabetes-related advocacy?
Burke: Since the transplant, I have really been concentrating on my own health, but it is something I do want to get back into. Organ donation, kidney disease and diabetes are all important to me. I want to make sure people with diabetes know there are things that can go wrong; your eyes, kidneys, nerves, and heart can all be affected by the disease. I have had bypass surgery, surgery on my eyes, and times where I can’t feel my feet.
DiabetesCare.net: You have a new business, South Shore Diabetes Coaching. Please tell us about it.
Burke: This is a brand new venture. I’m still in the process of getting everything going. I want to help others who have diabetes with things like their glucose monitoring, diet, exercise, or anything related to their diabetes.
I talked to my doctors and one of the things they wished more people would do is become more in tune with their diabetes. Sometimes, they only see their diabetic patients once a year. You really can’t get into great control that way.
Of course, one of the reasons is that people hate going to the doctor, so one of the things I hope to do is be a mentor where instead of setting up an office, I would go to peoples’ homes where they are a lot more comfortable, and we can look at their daily lives. We can do things like go to their refrigerator, or see what is and isn’t working for them on a personal level.
I would also like to communicate with people not just locally, but over the phone or through e-mail and help in those ways as well.
For those interested in reaching out to Burke to find out more about his experience or how he can help you through his emerging coaching business, feel free to call him at: (781) 248-1722 or e-mail him at: firstname.lastname@example.org.