2 posts tagged “amputation”

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.


Meet Our Transplant Community’s BionicMan

Posted June 7th, 2010 by

Since the launch of the PatientsLikeMe Transplants Community in March, more than 1400 patients have come together to share and learn from their transplant journeys. Thanks to our partnership with the National Kidney Foundation serving New England, BionicMan was one of the first transplant recipients to sign up and played a critical role in helping us shape the community before it was launched.  Recently, we interviewed BionicMan to learn more about his transplant journey, his experience with PatientsLikeMe, and his participation in the U.S. Transplant Games.

blog-logo2 (PatientsLikeMe) You’ve been a member of PatientsLikeMe since we started testing the transplants community months ago. How did you find out about PatientsLikeMe?

screen-shot-2010-06-07-at-114419-am (BionicMan) I found out about PatientsLikeMe from National Kidney Foundation serving New England.  I think it has benefited me because I like to talk to people and give them the benefit of my experiences.
blog-logo2 (PatientsLikeMe) With both a heart and a kidney transplant, how has your life changed over the years?


screen-shot-2010-06-07-at-114419-am (BionicMan) As both a heart transplant (1992) and kidney transplant (2007), my life has changed in so many ways.  I try to live life to the fullest each day, and appreciate every moment I have with my family. Over the years I have had a few setbacks, like CML and colon cancer and the amputation of my left leg just below the knee, but I have been able to overcome all these things and inspire many people.  I wouldn’t change anything, and I will never ever give up.
blog-logo2 (PatientsLikeMe) What is one thing you think patients waiting for an organ transplant should know?


screen-shot-2010-06-07-at-114419-am (BionicMan) People heading into a transplant should know they are making a lifelong commitment to their health, and they must take care of the Gift of Life they are about to receive.  Just like everyone else, not everyday will be great, but it sure beats the alternative.
blog-logo2 (PatientsLikeMe) You’ve attended the U.S. Transplant Games before.  What was that experience like and would you recommend other patients attend?
screen-shot-2010-06-07-at-114419-am (BionicMan)I would definitely recommend going to the U.S. Transplant Games for every transplant recipient.  It is like being in a city of transplant recipients. Whether you are real athletic or not, you will enjoy the experience, meet people you will be inspired by and remember your whole life. No matter what is going on in your life, you will see people with more problems than you, yet they have overcome.  You will definitely cry at your first Opening Ceremonies, but your life will be changed forever.  You will also get to see the real heroes in Organ Donation – Donors and their families.

One of my proudest moments was during the 5K road race at the Games. I was doing the race in a regular transport wheelchair after losing my leg and before getting my prosthetic, and while rolling past a photographer, he said to me  – “From Stump to Hero!”

blog-logo2 (PatientsLikeMe) Great quote!  Thanks for sharing with us and the community, BionicMan.