2 posts tagged “life on the t list”

Battling the Complications: An Interview with Diabetes Patient Michael Burke (Part II)

Posted November 9th, 2011 by

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

PatientsLikeMe Member and Diabetes Blogger Michael Burke

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

Michael Burke's Brother and Kidney Donor Tommy

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

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Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.


Remembering My Sister Linda: An Interview with Diabetes Patient Michael Burke (Part I)

Posted November 2nd, 2011 by

PatientsLikeMe Member and Diabetes Blogger Michael Burke

As we’ve discussed in recent blog posts, November is American Diabetes Month.  To help you learn about diabetes from a patient’s point of view, we interviewed Michael Burke, a PatientsLikeMe member who writes “Life on the T List”, a blog about his life as a diabetic before and after a kidney transplant.

But as you’ll soon see, Michael’s life as a diabetic was first influenced by that of another diabetic – his older sister Linda. (He himself was not diagnosed until he was a teenager, more than 10 years after Linda’s diagnosis.)  Below is Michael’s chronicle of her lifelong struggle with type 1 diabetes, and next week we’ll share his own journey, including his June 2011 kidney transplant. Don’t miss this moving story of a family profoundly affected by diabetes.

Tell us about your older sister Linda.

Where do I begin?  Linda was someone who I looked up to my whole life when we were growing up, and even though she is no longer here, I still look up to her.  Linda was diagnosed with [type 1] diabetes when she was six years old, which made me three when she was diagnosed.  So, to say that I grew up with diabetes my whole life is not a stretch.

I didn’t realize it early on, but for Linda, and many diabetics during that time [the 1970s-1980s], staying in control of diabetes was very difficult.  Daily testing was very rudimentary compared to testing today.  Testing back then relied mostly on urine dip sticks and trying to determine what color the test strip was and then compared that to color chart on the bottle.  When the glucose meter was finally introduced, it was as if you could hear a collective sigh of relief from all diabetics.

Linda struggled with her diabetes through much of her childhood and into high school, and then when she was finally in college, it was really taking a toll on her.  Ever since being a child, Linda had a dream of becoming a nurse, perhaps because of the care she received from nurses growing up when she was at the doctor’s office or in the hospital.

If there was one thing that I have always taken from Linda, it is her determination.  She never once wanted to let diabetes control who she was.  While in nursing school at Simmons College in Boston, Linda began to lose her eyesight due to diabetes, among experiencing other complications such as the onset of kidney disease.  But she was not about to let this stand in her way of becoming a nurse.  In fact, [my brother] Tommy and I would go through her nursing books with her and help her study when she was having difficulty seeing the pages.

Michael Burke's Sister Linda on the Day She Graduated from Nursing School

A friend of our family who worked in the ophthalmologic division of Johnson & Johnson at the time told my parents of a retina specialist in Boston that may be able to help Linda.  The doctor was Dr. Edward Ryan.  Dr. Ryan and Linda had a great doctor/patient relationship.  He took a special interest in Linda’s case.  He began using laser surgery on Linda.  All I remember from those treatments was Linda screaming in pain.  The procedure has changed some since then, because I have had it done and it was not painful, probably due to the anesthetic.  Needless to say, Linda and the rest of our family credited Dr. Ryan with saving Linda’s sight – to the point that she was able to graduate nursing school and become a nurse at Children’s Hospital in Boston.

One of the areas many people don’t realize that diabetes affects is your heart.  In 1989, at the age of 24, Linda’s body couldn’t take the constant pounding diabetes was giving her, and, on March 14th, she passed away from underlying heart disease brought on by diabetes.

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Be on the lookout for Part II of Michael’s interview next week.