March 8, 2012 - World Kidney Day!

I was trying to come up with something witty for today, since today is World Kidney Day 2012!  But I know it is more of a day to poingnant and somewhat direct.  Now, if you remember, on World Kidney Day 2011, I had yet received my new kidney...so the significance of this year's World Kidney Day takes on a whole new meaning for me.

This time last year, to be honest, I had no idea what a little two pound organ was fully capable of.  I knew I was sick, but I didn't know how sick because kidney disease is a very slow progressive disease.  But as you have read from this blog in the past, once the transplant occurred, my life had changed, and not in such a slow, subtle way that kidney disease had changed my life over the previous 5-8 years - this was dramatic !

It was as if the surgeon, when he transplanted Tommy's kidney into me, just flipped a switch - I instantly had more energy because Tommy's kidney started working immediately!

But as happy as I am today, and as relieved and fortunate to have gotten a second chance at life, there is still a certain sadness still.  I was one of the lucky ones...I got the second chance.  Do you know, that yesterday, on average, 18 people died in this country because they were waiting for their second chance.

Now, 18 may not seem like a very big number, but when you pair it with the 18 people who will die today and the 18 who will die tomorrow, it adds up.  Soon that 18 turns into 126 this week, and 504 this month, and 6,570 this year - no, wait, we had a leap day this year, so that is an additional 18, bringing up to a total of 6,588 !

The 18 who will die today are in no way anonymous...they are someone's mother, or father, or sister or brother, or aunt or uncle, or a cousin, or a co-worker, or someone you sat next to in church, your child's classmate, a father trying to provide for his family, a single mother raising two little kids.  Those are 18 people who did not have to die.

Do me a favor, take a look at your friends list today on Facebook.  Think of what it would be like to lose 18 of those friends today - devastating.  Then another 18 tomorrow.

But, fortunately, it doesn't have to be this way - not at all.  And there is a very simple solution, and it is all through a simple act of kindness.  And that is to become an organ donor.  If you are renewing your licence, just check the box that asks you to become an organ donor - how easy is that?  Really, it can't get much simpler.  You can also go online to: www.DonateLifeNewEngland.org , or www.organdonor.gov .  Or, here's another way, if you know of a relative, or friend, or co-worker, or someone on your Facebook friends list, that needs a kidney - get tested.

How great would you feel if you saved someone's life today ???!!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org,  www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

February 10, 2012

This past week I had an incredible opportunity to tell my story at Harvard Medical School.

It all started back in June of last year…several days after the transplant, Dr. H. walked into my hospital room, grinning ear to ear because I was doing so well.  We were talking about my labs and how well my new kidney was doing and how I was feeling.  Then Dr. H. says to me, “I would love it if you would come and speak to my class at Harvard.” 

I was floored, but of course I immediately said yes.  I said yes without any hesitation, which is incredible in and of itself because I am one of those people who usually cringes at the thought of speaking in public.  I have never considered myself much of a public speaker…I have always been the shy one doing all of the work in the background.  However, over the last several years, I have been forcing myself into situations that call for some form of public speaking, trying to get myself through this fear.

I think one of the reasons, or probably the single most important reason, I agreed to do this was because of the subject matter – Diabetes and Kidney Transplantation.  I have lived with Diabetes now for about 41 years, 28 as a Diabetic myself, and the rest of the time growing up with Linda being a Diabetic.  And, of course, then there is Kidney Disease and the resulting transplant – kidney disease I am fairly new to (about eight years or so), and the transplant I am definitely a newbie, just having the transplant eight months ago.

Fast forward to this past Monday.  Dr. H. had invited me to come early so that I could sit in on her minicases class, as well as another lecture, and then I was due to begin my lecture at 11:30.  It seems like I have been in and around the medical field all of my life because of Diabetes, so it was interesting to be sitting in a class at Harvard listening to Dr. H. talk to her students about the effects that potassium has on the kidneys…similar to the many discussions Dr. H. and I have had over the years, so it was great that I could sit there and know what was being talked about.

After the minicases, Dr. H. and I walked over to the auditorium (called an Ampitheater at Harvard).  I guestamated that there were approximately 200 seats in this ampitheater, and when we walked in for the first lecture it was about 1/3 full, and Dr. H. turned to me and said, “Don’r worry, there will be many more here when you speak.”  And sure enough, when I got up to speak there were…it wasn’t completely full, but it felt like it.

So, as it comes time for me to get up, Dr. H. begins to introduce me, and she starts out by simply saying, “Our last lecture is…” and for a brief second I zoned out because as I heard those words “last lecture” I immediately thought of Randy Pausch at Carnegie Mellon University delivering The Last Lecture in 2007.  If you haven’t seen it, it is well worth watching, I have watched it several times and read the book, The Last Lecture, that followed.

I remembered how Randy Pausch handled himself during this lecture, knowing he was going to die because of the pancreatic cancer that he had been battling for so long.  He stood there with grace and poise and humility, as well as a great deal of humanity, and in the instant that Dr. H. uttered those words upon introducing me, and I immediately felt at ease…not because I was about to deliver a lecture on par to his (which mine was far from that, trust me), but because I saw part of myself in him.

During his last lecture, Randy Pausch said something that has stuck with me ever since…he said:

“The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.”
― Randy Pausch, The Last Lecture

With my Diabetes and Kidney Disease, I have encountered many brick walls, and I have always been determined to not only get to the other side of the brick wall, but to obliterate the brick wall in the process.  So, a talk in front of 100 to 150+ people should be a piece of cake (sugar free cake at that!)

As I walk up to the podium, I have one additional fear to overcome, and again, I don’t think I am alone in this fear – tripping !  Trust me, I’m sure if you do a search on YouTube, you would be able to find plenty of examples of people tripping on their way up to give a speech or presentation, and the last thing I wanted was to trip on my way up there at 11:30, and then have it posted on YouTube by 11:32 and then have it become an internet sensation by the time I was finished speaking.  Thankfully, I did not trip, nor do I think the students I was addressing would have done that anyways.

As I got going, and after I got rid of the “cotton mouth” feeling, I felt very comfortable.  I was a pleasure and an honor to be telling my story, because my story involves so many people, but in particular Linda and Tommy, who have been instrumental throughout my life.  I was also able to give the students a firsthand look at someone going through a kidney transplant, and blasting through that brick wall to show them what it is like on the other side, and how important organ donation is.

However, one of the best parts of the whole lecture was the genuine interest the students had in Tommy and his well being.  Tommy saved my life, and I am very happy that they were able to recognize both sides of the transplant process.

To Dr. H., thank you for the invitation…I hope I did you proud.

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org,  www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

January 11, 2012

It’s been a while since you have heard from me.  As you may know, my mom had been very sick, fighting cancer, so my attentions have been with her and helping her in her last days.  At just after 5:30 on the evening of December 27th, mom succumbed to cancer.
But I am not going to dwell on the sadness, rather I would like to tell you a story about something that happened that really touched my heart in moms last days.

The story actually begins back in October.  I had received an email from the website www.rockscarlove.com .  For those of you who know, you know Rock Scar Love is a fantastic website run by Amy Tippins.  According the websites banner, “Rock Scar Love is inspiring passionate lives through clothing. We celebrate sexy scars, the lessons they teach us and the strength they create.”  But in October, Amy added a hand-made crystal awareness bracelet, made with Swarovski Crystals.

I remember I was sitting with mom when I received this email, so I pulled it up on her iPad so that she could see a better picture of it since I could enlarge the picture on the iPad.  Mom took one look at this bracelet, one word slipped from her lips: “Beautiful!”  I then asked her if she would like a transplant awareness bracelet to commemorate mine and Tommy’s transplant surgery earlier in the year, and she said yes, and asked if I could get it for her for Christmas.

Fast forward to mid-December…moms condition had degraded to the point that we had hospice overseeing her final days, and they had been with her for about a month.  Needless to say, I had lost track of time, of days, of everything.  Suddenly, its December 15^th and I am holding moms hand when I realized that I never ordered the bracelet that she had wanted. 

I immediately sent an email to Amy Tippins explaining the situation to her and I asked her if she could help expedite the bracelet so that I could give it to mom for Christmas.  I was asking a lot of Amy, especially just before Christmas, and she could have easily said that it was too difficult to get it to me in time for Christmas.  But she didn’t, rather she and Rock Scar Love came through big time !

Hospice had been telling us most of the week that mom was close to death, so I was hoping to get the bracelet in time.  I received moms bracelet on the 21^st.  By this time mom’s condition had continued to deteriorate, she was no longer speaking with the exception of a word or two every now and then.  It was unclear how much mom was understanding what was going on around her.   But something interesting happened when I went to put it on her...now mind you, she is in and out of consciousness, and while still asleep, she lifted her left arm off the bed, sort of as if to tell me "please put it on this hand."  I placed the bracelet on mom’s wrist as she slept, but I still spoke to her and told her what I was doing and what I had put on her wrist.  Sometime later that day mom awoke slightly as I was sitting beside her on her bed.  What happened next was absolutely incredible to me (excuse me for a second here while compose myself…)…

I had not immediate noticed that mom was awake, but then she lifted her wrist towards her face, and with her eyes half open looked at her bracelet, and in the next motion, mom reached out and put her hand on my arm.  It was as if mom was saying thank you and that she liked her new bracelet – at least that is what I want to believe. 

The kidney transplant awareness bracelet looked absolutely gorgeous on mom, and I couldn’t have been happier to have been able to give it to her just days before she passed away.  I owe a huge thank you to Amy Tippins and Rock Scar Love (www.rockscarlove.com) for allowing me the opportunity to do this one last thing for mom.  I would actually urge anyone who wants to spread the word transplants, that you visit Rock Scar Love and pick yourself up a t-shirt or two, and even take a look at the awareness bracelet.

This whole situation actually reminded me of a Christmas song by the group NewSong released back in 2000 called “The Christmas Shoes”, and subsequent movie of the same name staring Rob Lowe in 2002.  The chorus of the song goes like this:

Sir, I want to buy these shoes for my Mama, please
It's Christmas Eve and these shoes are just her size
Could you hurry, sir, Daddy says there's not much time
You see she's been sick for quite a while
And I know these shoes would make her smile
And I want her to look beautiful if Mama meets Jesus tonight

It’s that last line that gets me, and sort of reminds me of my situation with mom.  In a sense, I wanted mom to look beautiful if she met Jesus that night.

As I said, the bracelet was beautiful on her, and she looked stunning when she met Jesus and got to see my Dad and my sister, Linda, who had both previously passed away before her.

I Love You, Mom…Thank you for everything…You Lived a Full Life !!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org,  www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

December 13, 2011 - Six Months And A Promise To Mom

Six months ago, I was looking out at the world sort of through a prism.  A prism, as you know, takes what we see and distorts the original image many images…many different images.  And depending on your view, you may not like what you see, but then again, what you are looking at could be a beautiful kaleidoscope.
Six months ago, I was awaiting a life changing kidney transplant.  My Diabetes had ravaged my body into near submission.  But as I had been taught by my sister, Linda, before me, Diabetes may be able to take a few good swings at me, but I was damned if I was going to let it kick the shit out of me.  My fight with Diabetes has been similar to that of the fictional heavy-weight prize fighter, Rocky Balboa, and his epic fights with Apollo Creed and others.

For those unfamiliar with Rocky (from the original Academy Award Best Picture winner in 1976),  he was a down on his luck fighter who got a shot at the big time in a fight with Apollo Creed.  The fight went the distance.  But we learned a lot from Rocky as a person, not just as a fighter.  However, his life outside the ring and his life inside the ring, in many ways, paralleled each other.  Rocky had heart and desire, and a will to win no matter how many times he was knocked down.

Later this month, I will mark my 28^th year with Diabetes.  I have taken some pretty severe punches from it, the need for bypass heart surgery, eye surgery and neuropathy to name a few.  But this latest punch, kidney disease and the need for a kidney transplant, I took was probably the most emotional for me.

I knew if I did not get the transplant I was headed for dialysis…and I mean no disrespect to those that have been through dialysis, or are currently on it, but I was scared of it from what I had heard from other patients, and I knew, at least in what the statistics show, that getting a transplant before the need for dialysis tends to have a longer success rate for a transplanted kidney.

But it was emotional for me because Tommy was donating one of his kidneys to me.  I think I was more scared for him getting the surgery than I was for me.  Then there was Christine, who had supported me helped me get ready for the surgery.  But the most emotional part of it all for me was seeing what mom was going through as a mother seeing her two sons in surgery at the same time, one helping the other to live.

Six months ago, I remember seeing mom being wheeled into my room in her wheelchair (paralyzed on her right side from a stroke several years ago) by Jodi, Linda’s best friend and someone who has been like another sister to Tommy and I.

Fighting back tears, I said. “Hi Mom.”  And she simply said, “Hi Michael…you did it!  You both did it!  I am so proud of both of you!”

Fast forward to today…today I had my six month check-up with Dr. P.  We talked a lot about how I was feeling and how my labs have been over the course of the last six months.  But there was nothing clinical about our discussion.  Throughout the whole appointment, Dr. P. wore a smile from ear to ear because she was genuinely happy as to how I was doing.

Over the last six months, I have experienced many of the ups and downs of post transplant life…thankfully, mostly ups.  I had an appreciation for life before, but I have an even greater appreciation now.

Aside from the quality of life that I now have, one of the more positive things that has come from this whole experience, is the friendships that I have formed, particularly through this blog.  Your experiences, your words of encouragement have meant a lot to me.  I hold a very special place in my heart for all, but especially for one, who I now consider part of my family.  She has not had the experience of a transplant, and I hope to God that she never has to, but she has helped me with my Diabetes as I have with hers.

Just as I have had many great experiences over the last six months, like the prism I mentioned, there are many positive images, but there are some images that are not as positive.

Six months ago, I was ecstatic to see mom when she came into my room.  Today, I am ecstatic to see mom every day because I know there may not be many of these days left for her as she has been fighting off cancer.  Mom taught me how to have a fighting spirit.  She has accepted that she is in a fight that she cannot win, but she will not let the cancer know that.

Mom…it is my promise to you…that I will continue to fight.  I will take every punch thrown at me and if I am knocked down, I will get back up and continue to fight.  You fought for Linda and I with our Diabetes, and I will not let your fight be in vein.  I promise, I will fight as you taught me, whatever form that may take – be it with my own Diabetes, protecting my new kidney, my heart, my eyes, my nerves; be it through supporting others and educating others in Diabetes and kidney disease; be it through whatever means possible.

Mom, six months from now at my one year anniversary of my new lease on life, I know you may not be with us physically, but your spirit will be in our hearts.  Thank you for everything you have ever done for me.  Thank you for walking with me this far into my life.  Please know that you have been an indomitable inspiration.  You have given me the tools to continue, and I hope I make you proud the rest of the way.  Mom, I promise to continue fighting for me, as well as others.

Mom……Thank You and I Love You !!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org,  www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

November 24, 2011 - Thanksgiving

Giving thanks is something that many of us take for granted until we are slapped in the face with a real life changing event.  If things are going well, we sometimes forget to stop for a moment and think about how we got to this great place.

So today, Thanksgiving, I would just like to tell you about a few things that I am thankful for, and I invite all of you to share, if you wish, what you are thankful for as well…

I am thankful for:

·         A second chance at life because of Tommy.  On June 7^th of this year, Tommy gave me that second chance when he donated his kidney to me.  As I have said many times here, all I can do is say thank you for the amazing selfless gift he gave me.

·         My family.  They have been there every step of the way with me.

• My wife, Christine.  For all of the love and support she has given me through all of the ups and downs of this year.

·         My friends. I have met or been introduced to so many wonderful people around the country to around the world.  I am very fortunate to have you all in my life.

·         Mom.  I am thankful to have today to spend with her.  She may not be with us much longer, but none of that matters today.  Today will be a day to try and make her as happy as possible.

·         Everyone who reads this blog.  Thank you for taking such an active interest !

I wish you all a very Happy Thanksgiving !!!  May your day be filled with family and friends who are special to you.  Giving thanks may only take but a mere few moments, but it lasts much, much longer than that, perhaps a lifetime !

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org,  www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

November 14, 2011 - World Diabetes Day

Today, November 14^th, is World Diabetes Day.

I consider myself to be a fairly well informed Diabetic.  I try to stay abreast of all things Diabetes.  I want to know how others are treating their Diabetes and living with it every day; I want to know if there are new advances to get excited about – unfortunately most of those advances are in the equipment that we use, such as glucose meters or insulin pumps; and I want to know anything and everything else I can learn about Diabetes, meaning, I want to be a sponge and soak it all up.

But in the interest of full disclosure, this Diabetic, living with the disease now for nearly 28 years, I have to admit I was unaware of World Diabetes Day, let alone that November 14^th is set aside to play host to this day.  For a long time, I have been acutely aware that November is National Diabetes Month in the United States, but for one reason or another, World Diabetes Day escaped me.  So, as I am just learning about it, I think it is a good exercise for all of us to become more aware of this day and what it means, if you don’t mind me indulging a bit.

According to the International Diabetes Federation website, “World Diabetes Day (WDD) is celebrated every year on November 14. The World Diabetes Day campaign is led by the International Diabetes Federation (IDF) and its member associations. It engages millions of people worldwide in diabetes advocacy and awareness. World Diabetes Day was created in 1991 by the International Diabetes Federation and the World Health Organization in response to growing concerns about the escalating health threat that diabetes now poses. World Diabetes Day became an official United Nations Day in 2007 with the passage of United Nation Resolution 61/225. The campaign draws attention to issues of paramount importance to the diabetes world and keeps diabetes firmly in the public spotlight. This year sees the second of a five-year campaign that will address the growing need for diabetes education and prevention programmes.”

So why November 14^th specifically, you ask (as I did).  Well it is for a very good reason, in fact.  As it turns out, November 14^th marks what would have been the birthday of Frederick Banting, who along with Charles Best were the discoverers of insulin in 1922.

The slogan at the top of the International Diabetes Federation website is: “Act On Diabetes.  Now.”  This is a very important statement.  It applies to all of us, Diabetics and Non-Diabetics.  It is a call to action for Diabetics to realize what type of control they are in with the disease and improve that control, even if your own Diabetes management is going well, because, unfortunately, Diabetes is a Merry-Go-Round that we cannot get off.  And for Non-Diabetics, this is an opportunity to become more informed and more educated about Diabetes – about risk factors, about complications, and how to support family and friends living with Diabetes.

For me, today is a day to honor and pay respect to those that I know and don’t know who wake up every morning and go to bed every night hoping and praying for a day when there is a cure for Diabetes.  It is also a day for me to honor and respect those that have had the opportunity of a pancreas transplant and are living without the thought of needing to take shots or take a bolus in their pump to cover a meal with insulin.  And today is a day to honor and memorize those who lived everyday with Diabetes and are no longer here with us.

Today, I honor, respect, and in some cases, memorialize:

Linda Burke – My sister, who passed away, at the age of 24 in 1989, due to complications from Diabetes.  A part of Linda is with me every day helping me with my Diabetes.  She was and still is, a great teacher.

Norman Burris – The father of a very good friend, who lived with Diabetes for many years, before passing away.  He was a great source of inspiration for his family and friends, especially to his daughter.

Elizabeth Fallows – A high school classmate of mine who passed away several years ago, who was a Diabetic from a very young age.

Eric Harrington – A neighbor when I was growing up, who lives with Diabetes today.

Cora Rodych – A Diabetic living in Canada who has received a kidney and pancreas transplant, and has been doing well with her Diabetes since receiving her new pancreas.

Christine Burke – My wife, living with Type 2 Diabetes since November 1998.

Reyna Almond – A very good friend, living with, and succeeding at managing her Diabetes well.

All the Patients at Joslin Diabetes Center in Boston, and all of the patients at similar clinics across the country and across the world – We are all in this together !

And I would be remiss, if I did not thank all of the many doctors and nurses, as well as our family members, who have helped us all learn to deal with and help manage our Diabetes…Thank You !!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org,  www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

October 21, 2011

Tomorrow, October 22, 2011, marks an important day around the country.  No, it’s not a national holiday, but with as much success each year since its inception in 1992, perhaps it could be someday, you never know.
What is this special day, you ask?

It is Make A Difference Day!  A national day of giving back.  A day where everyone has a chance to step up for their communities.  Perhaps you and a group of friends get together to help clean up a park so kids can play safely; or putting together an event where you help the homeless, perhaps in a soup kitchen…the ideas are endless.

But I have an idea that many may not have thought about but I would like you to consider, talk about with your family and friends about, and then take action.  It is a personal decision, but once you make that decision, it is so easy to accomplish, and what you get out of it is almost too difficult to put into words.

The simple act of kindness that I would like you to consider on Make A Difference Day is becoming an organ donor.

This is not a day to throw a whole lot of numbers at you, but suffice it to say, there are many, many people around the country and around the world in need of a life saving act of kindness.  You may even know people in your communities, in your cities and towns, where you work, where you take your yoga or Pilates or Spinning class, or they may even be your next door neighbor, all of whom may need a kidney, a pancreas, a liver, or a heart.

As you know, I was the recipient of a donated kidney earlier this year, from my brother, Tommy.  I was one of the lucky ones.  Had Tommy not been a match, who knows where I would be today – probably joining many of the thousands on dialysis, waiting and hoping for the phone to ring.

And that wait, for those that do not have a ready, willing and able donor, can be excruciatingly long – not months, years.  And from what I am told, there are similar wait times for people needing other the other organs mentioned, as well.

Perhaps you have had a family member or dear friend receive an organ from a complete stranger in order to keep them alive, so you could celebrate more birthdays and holidays with them.  Well, if that is the case, and you haven’t done anything about it…this is your chance to step up, man up, woman up, and pay it forward.

If you want to make a positive change in your life AND in the life of someone else, then stop putting it off until tomorrow, because tomorrow sometimes never comes for some people.  Make a difference in someone’s life…make a difference in your life – become an organ donor !!!  

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.