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Kingston, Massachusetts, United States

Monday, April 25, 2011

April 25, 2011

I’m beginning to think that maybe I should go and play the lottery tonight…
Let me back up for a minute…This past Saturday, I was out and about – I admit it, I was looking for Easter grass…even at this age, our family still puts Easter baskets together for each other.  I, of course, left this go right up until the end.  Baskets – check…candy – check…gift certificate to one of Christine’s favorite jewelry store – check…fake Easter grass to put into the baskets – nothing!  I could not find Easter grass to save my life.

As I was about to enter the last store on my quest for Easter grass, my cell phone rang – it was the transplant center…they had another possible donor for me.  My excitement was tempered only by what had happened three weeks ago.  There were a lot of thoughts going through my head in a matter of seconds as I was being told about this donor…what I knew about them was that they were 22 years old and a perfect match to me.  I did not know how they died.  But I was told one more bit of information – the donor had a confirmed case of Hepatitis.

Ultimately I passed on those organs for this reason…yes, I would potentially be getting rid of Diabetes if the pancreas worked, but in exchanged I would be taking on organs that potentially could put me at risk for developing Hepatitis down the road.  The risk of swapping Diabetes for Hepatitis wasn’t worth it for me.

So, then, I am going about my business this afternoon and the transplant center calls again! (Now, you may be seeing where I may want to play the lottery).  This time the donor is again 22, had committed suicide, and there was possible evidence of track marks in their arm, but the family denies any knowledge of drug use.

Yikes…two calls in a span of less than 72 hours – Wow.  I erred on the side of caution again, only because there was no definitive answer whether or not the donor had done drugs or shared needles before they passed…it wasn’t a leap of faith that I was willing to take.

Have I done the right thing in being picky with what organs to accept or reject over the last several weeks?  I am fortunate that Tommy is ready, willing and able to donate his kidney (by the way – a big congratulations to him, as he finished the Boston Marathon in 5 hours and 45 minutes, all while raising a little more than $7000 for the Joslin Diabetes Center!) to me in June.  But I have my family to thank of - Christine, Mom, Tommy, and of course, Bella (and our outstanding extended family of aunts, uncles, cousins, etc.) - so I want to make the best possible decision for me and for them.

If I were a betting man, I would like to think I would have at least one more opportunity at a pancreas and a kidney together before June – let’s hope.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

Monday, April 18, 2011

April 18,2011

The other night Christine and I were out to dinner with Paul.  Paul is like a brother to me.  We have known each other since the sandbox at the Old Sailors Home (our kindergarten) in Duxbury – literally.  Over the years we have shared many a meal after, in retrospect, were life’s key events for both of us – it could have been a ham sandwich lunch that Mom would have made us (they were huge), or a great Italian meal his mom made (very good cook), or at one of our favorite restaurants through the years…Ming, Mama’s just to name a couple.
So, I suppose, it was only fitting that we were out to dinner at Mama Mia’s…mmmm, Mama had the perfect blend of spices in her sauce that night.  It wasn’t planned that we would be going out on this night…we had been trying to get together for the last few weeks and we had made tentative plans last week after I got back from the hospital because I wanted to tell him about everything that had gone on last week with the possible transplant that eventually fell through.

As we sat and looked at the menu, I couldn’t help but turn my attention to the dessert section.  For most people, that would be no big deal.  But for me, it was something because having been a Diabetic for the last 27 plus years, I have sort of trained myself not to even think about going to that part of the menu…but there it was staring me in the face – CHEESECAKE, TIRAMISU, HOMEMADE CANNOLI, mmmmmmmmm.

For that brief second, I was thinking of what life would have included had I had the pancreas transplant last week (or more accurately, if the organs were viable enough to transplant).  I know it is probably silly of me to think in those sort of terms, but when you have it drilled into your head that, generally, when you go out to eat, most restaurants do not cater to the Diabetic population you usually don’t look that far into the menu…why would you?  Why would you want to torture yourself?

I know if Christine and Paul had noticed that I was looking at that part of the menu, one of them would have probably slapped me in the back of the head – and rightly so.

No, I don’t want to torture myself.  The reason for getting a pancreas is not just so that I can indulge in chocolate cake, it is to have a better quality of life…a life that would hopefully no longer include testing my blood sugar eight times per day, adjusting my insulin dosages (basal and bolus rates since I am on an insulin pump), worrying about keeping my HbA1c in check (my last one was 7.2%…the American Diabetes Association and Dr. Murphy all want it below 7%, and with a new, functioning pancreas it would be somewhere around 4% - 5%...numbers of which I probably have not seen since I was ten years old).

A better quality of life…that would be incredible.

If you, or someone you know is interested in organ donation, please contact: www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org;

Friday, April 8, 2011

April 7, 2011

Have you ever had one of “those” days?  You know the days I am talking about…the days that start off seemingly simple, but then end up being insane.  The kid of days you look back and ask yourself, “What the hell just happened?”
Here’s what happened earlier this week…Christine and I were visiting her parents in Charlottesville, VA, and as an early birthday present, Christine bought me a ride on a balloon, something that I have always wanted to do.  However, she said she would not go because she is terrified of heights – that being said, even if you are someone afraid of heights, I would still recommend taking a hot air balloon ride – it is an amazing experience. 
Christine had contacted the Blue Ridge Balloon Company and arranged for me to fly with them the next day…The next morning we arrived at the launch site, it was a little chilly, but otherwise a beautiful morning.
As we were floating through the Shenandoah Valley, all I could think about was how gorgeous the view was.  For once, at least for the first time in over a year, I wasn’t thinking of kidney disease or diabetes or the upcoming transplant…I was just in awe of the spectacular view.
Later that day, after Christine and I had stopped to get lunch, somewhere around 1:15 my cell phone rang and it was Dr. Evenson from the Transplant Center.  Up to this point in the transplant process, I had never spoken to Dr. Evenson, but I knew Tommy had during his workup, so my first thought was that something was wrong with Tommy and that he would not be able to donate a kidney to me as planned.  I could not have been any more wrong when she blew me away with what she began to tell me.  Our conversation went something like this:




“This is Dr. Evenson from the Transplant Center”

“Hi, how are you?”

“Good, thank you…I have some news for you…we have a kidney and pancreas available for you, but you must be in Boston and in the OR by 8 tonight.”

At that point, I asked Dr. Evenson if I could have a few minutes to speak with Christine – I also wanted to try to stop my world from spinning so I could figure out what just happened.

Christine and I were both in shock, but agreed to tell Dr. Evenson yes, IF and only if there was a possibility making back to Boston…my version of the Amazing Race was now on!!!

As luck would have it, when I got the call from Dr. Evenson, Christine and I were only about 10 – 15 minutes from the Charlottesville-Albemarle Regional Airport.  As we pulled up to the airport, I had no idea which airline I was going to go with – there was US Air, Delta and one other that I can’t remember…I went with the shortest line.

As I went up to the ticket agent and explained what was going on, this woman (the ticket agent) picked up the phone and in a soft voice that I could not hear said something to the other person on the other end of the line and then hung up…she then began frantically, yet calmly and professionally, getting me flight information and printed a ticket for me – there were no direct flights, I would have to fly through Philadelphia or Charlotte, NC…she got me on the flight to Philadelphia.

I got through security and then it was onto the boarding agent, where I was met by a nice woman who simply said, “you must be the gentleman we have been waiting for.”  She then led me outside onto the tarmac and to the plane and simply smiled and said, “Good Luck” as I boarded the plane.

I don’t know this to be true, but it appears that the phone call the ticket agent made (the one that I spoke with first) was to hold this plane for a few minutes until I could get on…I wish I knew her name because I would like to send her a big thank you.

As I boarded the plane, it seemed as if several of the passengers may have been annoyed by their delayed departure.  Honestly, I probably would have been too if I were them.  But one person that didn’t appear annoyed at all was a passenger that was very sweet and endearing and wanting to know all about what was going on – and that was Kayla.

To say the least, my anxiety was through the roof at this point.  From what I could tell, we made decent time getting into Philadelphia, enough time for me to make my connecting flight to Boston – or so I thought.

We were on the ground in Philadelphia, but we could not pull up to the gate.  The pilot got on the intercom and said that the delay was due to a security issue at the airport.  Come to find out, that the President was there at the same time…we sat for about a half hour before we could pull up to the gate…needless to say, I missed my connection.

Fortunately, there was one seat available on the next flight to Boston and I was able to get it.  But this meant that another hour would be wasted and now I was not due into Boston until 6:45 – even if we were on time, getting through Boston traffic would be a nightmare.

After what seemed like an eternity, I made it to the transplant floor of the hospital at 7:30.  I was informed by the nurse that surgery was delayed one hour and that there was a lot that she would have to do with me prior to the surgery.

I was fortunate that Tommy and Mom were with me at this point, but I was missing Christine.  I couldn’t imagine going into surgery without her there, but I knew she was on her way and she said that she would be there when I woke up.

As I was in the pre-op area waiting to go in, all I could think about was not being a Diabetic when I woke up, and that was blowing my mind.

Then Michelle, my nurse was called away.  When she came back she handed me the phone.  I thought it was going to be Christine wishing me well before going in, or perhaps the President calling to apologize for delaying my flight in Philadelphia…Nope, none of the above…it was Dr. Evenson. 

“Michael, I am sorry to have to tell you this, but the organs are not viable, there are anatomical abnormalities and we will not be able to do the surgery.”