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.