May 25, 2011

I have started and stopped this next post several times.  In one sense it is extremely easy to write, but in another it is very difficult.  It’s about Tommy.  I want to introduce him to you in a way that shows that I am proud of him, and not just because he is stepping up to save my life, but more so to show you the type of person he is.  I have had a lot of difficulty thinking (and over thinking) how to thank him for the gift he is giving me…hopefully these words here will somehow convey that.

Tommy and I grew up on the South Shore of Massachusetts, with an older sister, Linda (she passed away in 1989 due to complications from Diabetes) and Mom and Dad.  Dad was one of the hardest working people I have ever known – he worked in masonry…at times we would ride into Boston (or through Boston on our way to a family vacation in Maine) and nothing made Dad prouder than pointing out to Tommy, Linda and I, all of the buildings in Boston that he helped to build.

Often times, when we were back at home, we would try to build our own things, or at least pretend to.  There was a small dirt pile off to the side of the house that we use to run our Tonka trucks through, and build buildings with Legos…in fact, I’m willing to bet that if we were to excavate that area today, we would probably find an old truck, some Legos and a bunch of Army men.

Tommy is younger than me by five years, though you may not know it by looking at the two of us…Tommy has also been very successful in his career – moving his way up in pharmaceutical sales from a sales rep to a regional sales manager…he has even been recognized nationally for his work in pharmaceutical sales.  In my own estimation Tommy has been extremely successful, though I am a little biased. 

In life, Tommy and I are both very driven individuals…however, I hate sales (I’m just not that good at it)…Tommy, on the other hand, has done very well.  I think we are probably both driven because of the way Mom and Dad brought us up – if you are going to do a job, do it right and if you expect to be paid for working a full day, then you better put in a full days worth of work.

Growing up I guess you could say that we pushed each other without realizing that we were doing so.  Whether it was down in Mom and Dad’s  basement, where we set up some old mattresses and would pretend we were in the WWF, or, and more often, you could find us out in the back yard playing baseball (or stickball) or soccer.  Tommy went on to be a decent baseball player, as well as a good football player in high school.

As we got older and have taken on more responsibilities, Tommy has never wavered.  In fact, he actually bought the house next to Mom and Dad.  And after Dad died, Tommy spent more time in the house with Mom and has really been the primary caretaker for Mom after her stroke and battle with lung cancer.  He has tirelessly worked with Mom in her rehabilitation and we are determined to help her walk again.

And through all of this, when I needed to ask Tommy if he would consider being tested to see if he could donate a kidney to me, he never hesitated.  When we, as a family, discussed how to go about asking people to get tested, Tommy simply said, “Let’s just see where my tests go and then we can think about asking other…there may be no need.”  In fact, there was no need as Tommy called me after several long weeks of waiting for his blood work to come back…he said that he was 5 out of 6 antigen match.

That will never be a phone call that I will ever forget.  It gave me hope…and a chance to live.

It is impossible for me to fully say how much Tommy means to me, as well as how much the gift he is giving to me means to me…I can simply say “Thank You”.

Tommy

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

May 16, 2011

My last two entries were about two extraordinary women, Mom and Christine.  As I think about it, I have been pretty fortunate with all of the extraordinary women that have been in my life – my sister, Linda, both of my grandmothers (both went by the nickname of Mommom), as well as countless aunts, cousins, friends and those from Christine’s family as well.  And as I get ready for my transplant I want to take a little time to talk about two other extraordinary women who have helped me during this entire kidney transplant journey.

The first person I would like to tell you about is Dr. Sarah Murphy.  Dr. Murphy is my Primary Care Physician.  I first me Dr. Murphy about twelve years ago when I went along with Christine to her first appointment with Dr. Murphy. 

Perhaps I had been spoiled by having such a great pediatrician (Dr. Martin Gaynor) growing up, that I judged all other doctors after him by his standards of practice as a doctor…and as you go through life and your insurance changes and you are forced to find a new doctor, you get a lot of practice trying to find the one you will ultimately be comfortable with.  So, on that day during Christine’s first appointment, I had a chance to meet Dr. Murphy, and I was struck mostly by her genuineness.  There wasn’t a feeling that we were being rushed, she actually wanted to know about us (even though we were just there for Christine).  I was hooked, and from that point on, Dr. Murphy was not only Christine’s new doctor, but mine as well.

Besides being genuine, Dr. Murphy is extremely caring and concerned for our well being.  She would think nothing of calling at eleven at night if my labs were a little off to check to see how I was feeling.  There was also a time when she had to hospitalize me for pneumonia, and she knew that I wasn’t really happy about it…but I remember waking up in the hospital the next morning,  just before five in the morning, and who was at the foot of my bed…Dr. Murphy.  Over the years, Dr. Murphy is someone that I have truly been able to count on.

The second extraordinary woman I would like to tell you about is Dr. Melanie Hoenig.  Now, if you have been reading this blog from the beginning, you may remember Dr. Hoenig from some of the earlier posts.  I was first referred to Dr. Hoenig back in 2004 by Dr. Alan Moses (who was then practicing at Joslin Diabetes Center in Boston).  Dr. Moses just felt, due to my longevity with Diabetes, that it would be smart to bring a Nephrologist onto “my team” just to keep tabs on my kidneys as I get older living with Diabetes.

Much like Dr. Murphy, Dr. Hoenig is extremely genuine, thoughtful and caring.  As the years went by and my kidneys began to show subtle signs of decreasing in function, Dr. Hoenig would reassure me that we would work together to slow the regression of my kidneys…and as my creatinine levels continued to creep up, Dr. Hoenig broached the topic of transplantation.

So when needing a kidney transplant became more and more evident, Dr. Hoenig saw that the subject made me uncomfortable and nervous, and I remember her turning to me and saying, “Don’t worry, I will be with you all the way through it.”  In a way, it wasn’t just the words she said, but how she looked in my eyes and said them that told me that this was going to be ok (though, I’m still nervous as hell about the whole thing!).

So, here’s to Dr. Murphy and Dr. Hoenig…thank you for all you have done, along with Tommy donating his kidney to me to me to save my life, you two have also played a big role in saving my life!

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

May 12, 2011

I would be remiss not to tell you about Christine, my wife, whom I met back in 1999.

I guess you could say that we met by accident.  It was just after Christmas when I went online and was looking for some Diabetes websites.  I stumbled upon this one site where it was a typical support site where people could post questions and get answers to just about anything.

Christine had posted a question about how to deal with her new diagnosis of Diabetes.  I saw the question and posted a response.  That led to more questions a newly diagnosed Diabetic would ask, and a conversation, of sorts, began to emerge.  That led to an exchange of emails for a couple of weeks, and before too long we were talking on the phone for what seemed like hours. 

At this time, Christine was living in the Washington D.C. area (originally from Long Island, NY).  I invited her to come up for a weekend and she accepted.  When she arrived she had three big bags, and as I was introducing her to mom and dad, dad looked at her quizzically and asked her, with his wry sense of humor, “how long are you staying, a month?”  You see, dad was a minimalist, so he did not quite understand the need for three big suitcases for a trip that would last for a day and a half.

Needless to say, that was the first of what would be many trips here, and soon she was looking at the possibility of moving here.  She fell in love with the quaint sea side town that Duxbury is, and the charm of the South Shore…and of course she fell in love with me and my charm as well!

As it turns out, the chance encounter on that Diabetes website was the start of what has become a beautiful relationship.  And as the years have gone by, I couldn’t imagine anything better – except more maybe a better health record.

But, in essence, I couldn’t imagine facing all of the complications I have had with my Diabetes, especially the heart disease, the kidney disease and the eye issues without Christine by my side.

Facing a heart bypass operation is scary in of itself, but now having to face not only the possibility of a kidney transplant, the definite probability of it.  I am very thankful for the support my family has shown me (how much more supportive could Tommy be than to be willing to donate one of his kidneys to me, I cannot find the words to show how grateful I am to him for this gift).  But words also cannot express how what Christine means to me as we go through this kidney journey.

I often kid her that she never signed up for any of this.  And without missing a beat, she will always turn around and say, I love you, and we will all (your family, my family and us) get through this together.

Christine and Bella

Thank you for being by my side Sunshine…I love you!

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

May 6, 2011

This Sunday is Mother’s Day here in the U.S., so I thought it would be fitting to talk a little bit about my Mom, Bridget Theresa Burke.

I can honestly say that I have probably given my mom way too much to worry about ever since she brought me into this world.  Right from the very beginning, she (and Dad) had me at the doctors and making countless trips to the hospital due to a very bad case of childhood Asthma.

There were so many times, probably too many to count, where mom was by my side trying to get me through an Asthma attack – steaming up the bathroom trying to get the steam to help open my lungs, or sitting with me out on the front porch step waiting for the ambulance to take us to the hospital when the instances were a little more severe.  Then there were the times, as a little kid, when I would have to stay in the hospital for several days because my Asthma was so bad, and mom was right there the entire time.

As if the asthma wasn’t bad enough, then came my diagnosis of Diabetes, and mom never skipped a beat.  I was scared, and she knew it.  We had already been living with the disease as a family since Linda was already diagnosed with it…but now, now there were two of us, two of her own, that would have to live with this insidious disease.  But mom never flinched.  She was always right there talking to the doctors and nurses, helping us.

When I needed a kidney transplant, one of the first people I wanted to confide in was mom.  For one reason, I thought mom would make this all better, take it all away…but this time mom’s super powers were no match for what I was facing.  But rather than seeing fear in her eyes when I told her that I needed a kidney transplant, I saw determination – determination that everything was going to be ok, that things would work out.

By this point in her life, mom had seen it all with Linda, Tommy, Dad and I…and she had even been through rough stuff of her own – survivor of two strokes, and survivor of three bouts with cancer.  She is sort of a modern-day Rocky – fighting real hard nosed battles, but in the end she somehow comes out on top.

I shouldn’t say somehow, because I have an idea of how.  She has a tremendous deep rooted faith.  A faith that began as a young girl in County Mayo, Ireland, and has grown stronger with each passing day ever since.

It wasn’t always for medical reasons that mom was always by our side growing up, she was there for all of life’s other ups and downs along the way…of course whenever we needed a dollar to run after the ice cream truck, she was there…whenever we had to eat all of our veggies before being able to go back outside to play, she was there, and whenever we had a baseball or soccer game, she was there.

So, here’s to you mom, thank you for being by my side during this difficult journey of needing a kidney transplant…happy Mother’s Day to you, and happy Mother’s Day to all of the moms out there!  I love you Mom!

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

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

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;

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:

“Hello.”

“Michael?”

“Yes”

“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.”