September 30, 2011

26 Million !

26 Million…this is how many people just in the United States have Kidney Disease…26 Million!

I have to admit, before actually being diagnosed with Kidney Disease, which as you know was brought on by my Diabetes, I knew very little about the disease as a whole…or, and perhaps more importantly, how many variations of the disease there is.  Some of those variations I have already touched on in earlier posts.

I want to tell you about another form of the disease, a form that has not received a whole lot of attention at all.  In fact, I am willing to bet that there are a good number of people who have Kidney Disease in general, and those who read this blog specifically, that may not even know this form of kidney disease even exists.  I also want to tell you about a special event being held in a couple of weeks with regard to this disease.

The form of Kidney Disease I am talking about is called Membranoproliferative glomerulonephritis (MPGN).  According to emedicine.medscape.com: Membranoproliferative glomerulonephritis (MPGN) is an uncommon cause of chronic nephritis that occurs primarily in children and young adults. This entity refers to a pattern of glomerular injury based on characteristic histopathologic findings, including: (1) proliferation of mesangial and endothelial cells and expansion of the mesangial matrix, (2) thickening of the peripheral capillary walls by subendothelial immune deposits and/or intramembranous dense deposits, and (3) mesangial interposition into the capillary wall, giving rise to a double-contour or tram-track appearance on light microscopy.  If you are aware of MPGN, you may also know that there are three separate types of MPGN, Type I, Type II and Type III.

You may have also seen MPGN Type II referred to as Dense Deposit Disease, or DDD.  WebMD explains Dense Deposit Disease (DDD) as a rare kidney disease that stops the kidneys from correctly filtering waste from the blood. The name is descriptive of the electron-dense changes that transform the middle layer (lamina densa) of the glomerular basement membrane (GBM) in a segmental, discontinuous or diffuse pattern. The glomeruli are the filtering units of the kidney. Blood flows through very small capillaries in each glomerulus where it is filtered through the GBM to form urine. When DDD is present, deposits in the GBM lead to disruption of kidney function. Because damage to glomeruli is progressive, about half of all persons with DDD experience kidney failure after living with their disease for 10 years. The development of kidney failure means that dialysis or transplantation must be started.

I am singling out MPGN Type II for a very special and personal reason.  You have seen me mention before that I have a great relationship with all of my cousins, to the point that they feel more like brothers and sisters rather than cousins.  If I could have been the only one in our family (immediate and extended) to ever have been affected by Kidney Disease, that would have made me very happy because that would mean that no one else in the family would ever have to live a day worrying about kidney failure, dialysis, or even transplantation.

Unfortunately, that is not the case.  My cousin Tommy, and his wife, Rose, have two beautiful children – Brenna, who just began her freshman year at college, and Tommy Jr. (The names Tommy, Jimmy and Michael are very common in our family…it is pretty funny sometimes to see someone (especially my mom or Aunt Mary) call out any or all of those names at a family gathering and have what seems like twenty people turn around and respond).

Tommy Jr. is 15 this year, and a sophomore in high school.  But about four years ago in 2007, Tommy was diagnosed with MPGN Type II/DDD.  Tommy loves school and got involved in SADD (Students Against Drunk Driving) and Junior AOH (Ancient Order of Hibernians) last year. His interest and talent in art continues to grow and he will continue with art classes at school.  Baseball is still his favorite, playing as much as he can throughout the year. He played for the Freshman High School team this past year in addition to 3 other teams.  It was a very busy spring and summer, his travel team winning the coveted Pennsylvania State Championship 14U Title.  After a few weeks off, he is ready to start Fall Ball this weekend.

Looking at Tommy, much like many others who have Kidney Disease, you would never know that he and his family deal with this disease every single day.  There is the constant regimen of medications and diet.  There are no days off.  But what you see in Tommy, is not so much of a person that is sick, but of young kid trying to enjoy every day with his family, friends, teammates and classmates.  Much of Tommy’s life is like every other 15 year old but there are many things so different because of the disease. While he is one of the lucky ones so far, there are many battling much worse symptoms. His daily medication has many side effects…still most troubling to him is growth deceleration.  He continues a sodium restricted diet and though he is used to it by now, the daily reminder of being different is always there.

This is Tommy with the logo he made for his walk.

One of the sad truths to this rare form of Kidney Disease is that approximately half of all children with DDD/MPGN II will go into kidney failure between 8-10 years after diagnosis. These children will require dialysis or transplantation in order to stay alive.

Two of the things I remember vividly as I was being rolled into the operating room for my transplant…one was of my brother, Tommy (see I told you there were a lot of Tommy’s in our family) going through surgery to help save my life; and the other was of Tommy Jr., just wishing that there would be a cure for his form of Kidney Disease, so he wouldn’t have to experience full kidney failure, dialysis or even the possibility of needing a transplant.

Which brings me to another sad truth of MPGN II/DDD, is that funding for research for DDD  is extremely limited.  So, Tommy, with the help of his family, aunts, uncles and grandparents, started to raise money for DDD.  This year he will be participating in Tommy Kane’s 4^th Annual Walk/Run Benefit for Kidneeds, which will be held on October 15^th – just a couple of weeks away.

Tommy would like to raise as much as he possibly can for his disease, and this year he has set a goal of $8,000.  Unfortunately, Tommy has a ways to go in order to reach his goal.  So, I would like to ask all of you to consider helping Tommy reach his goal.  I realize things are tight for everyone, but even if everyone contributed a just $5, $10, or even $20 (a week’s worth of coffee at Dunkin’ Donuts, or any other coffee shop), that would go a long way in helping Tommy reach his goal.

Tax deductible donations can be made online at: http://www.active.com/donate/TommyKane2011 (Visa, MasterCard, American Express, Visa Debit, and MasterCard Debit all accepted), or you may mail your donation to Karen Williams, 45 Inverness Road, Holbrook, NY 11741. Make checks payable to: Kidneeds, Greater Cedar Rapids Community Foundation. 

If you are also within an hour or two drive of the Philadelphia/Bensalem area and would like to participate in this event registration begins at 9am for the 5K Run/Walk (3.1 mile), which will start at 9:30 am, followed by a 1 Mile Fun Run/Walk starting at 10:00 am.  Tommy’s walk will be held at Neshaminy State Park, Pavilion #1.  The park address is 3401 State Road, Bensalem, PA 19020, which is located at the intersection of State Road & Dunks Ferry Road.  It is easily reached from the PA 132 (Street Road) Exit off I-95.

Please do me a favor…please pass along the link to this blog or the Facebook page to everyone in your address books/contact lists.  I would like to call attention to Kidney Disease in general, and MPGN II/DDD specifically.  I would love to see Tommy reach his goal, that would be a tremendous accomplishment, and he would be doing his part to reduce that number of 26 million affected by Kidney Disease!  On behalf of Tommy and his family, I want to thank you for helping him raise these funds and reach his goal.  If you would like additional information about DDD, please visit: http://www.medicine.uiowa.edu/kidneeds/index.htm

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.

September 26, 2011

Well it finally happened.  I knew it was just a matter of time.  But like most, I guess, I was hopefully trying to put it off as long as possibly could, and now realizing I wish I could have put it off for good.  It was inevitable, especially since my immune system is pretty much shut down now so the anti-rejection meds can do what they are suppose to do, and that is protect my new kidney.

What happened was, I got my first cold since having the transplant back in June.  No big deal, right?  Or so I thought.  Now, I know we have all had colds.  Most of the time colds are harmless, they just make us miserable for a couple of days, three, maybe four days, tops.  Then we feel better…no sniffles, no headache, no more achy feelings, no more itchy, scratchy feelings in our eyes or throat…it’s all gone, almost as if it were never there in the first place.  Only that didn’t happen in this case.

Nope, that didn’t happen at all.  I did everything I was suppose to do…I called the transplant center at the beginning of the cold to see what over the counter medications I was able to take that wouldn’t mess with my anti-rejection meds.  Then the cold lingered and lingered and lingered.  Then at about day four, I called the transplant center again and said that I was feeling better, overall, but I just can’t shake this nagging cough.  I then suggested a chest x-ray because of my history over the last five to ten years.  I said that I am probably just overreacting since this is my first cold or respiratory event since the transplant.  Betsy, the transplant coordinator, said it is better to be safe than sorry.  She then asked if I could get the x-ray done with my primary, Dr. M., that way I wouldn’t have to come all the way into Boston for what would be a very quick appointment.

I called Dr. M. and she put the order in for a chest x-ray…the x-ray was done, and sure enough, what was once just a simple cold had turned into a small spot of pneumonia on my right lung.  The Radiology findings report read as follows:

“There is mild accentuation of interstitial markings as compared with prior chest x-ray of 5/11/2011.  May represent mild fluid retention.  There is some question of some focal increased density in right third anterior interspace.  It raises the question of super imposed infiltrates.  No other interval change since prior 5/11/2011.”

I contacted the transplant team and told them of these findings and said that Dr. M. suggested a shot of Rociphin and follow that up with an oral antibiotic.  The transplant team ok’ed the shot of Rociphin and said that they would consult with Dr. P., as to how to proceed beyond that.

Dr. M’s office was open late on this particular day (Thursday), so I didn’t have to wait until the next day to get this course of treatment started.  After I checked in at the desk, I was then called to go into an exam room.  The nurse followed me in, and with her she had the syringe filled with the medication and an alcohol swap.  So as the nurse was verifying my name, date of birth, etc., I begin to roll up my sleeve so I could get the shot in my arm.  She then turns to me and says, “Oh, no…DROP ‘EM !”

Inside I’m saying to myself, “OH SHIT!”  Now, I have never had a problem getting a shot or giving myself a shot, after all I have given myself  somewhere in the neighborhood of 20,000 injections of insulin before I went on the pump.  But if there is one thing that I hate, it’s getting a shot in the ass…and this particular shot hurt like hell !!!  It still hurt two days later.  You know the type of shot I am talking about…it’s not shirt and thin like most normal shots.  No, no, ney, ney…this one is like the size and length of a javelin, and it feels like a javelin jabbed into your ass.

Needless to say, the following day, the transplant team also suggested putting me on a ten day course of Levaquin.  And that is where I am right now.  I will have a follow-up chest x-ray later this week to see if the pneumonia is resolving, which I hope it is.

I guess the lesson that I have learned here, is that in post-transplant life, everything that was once simple, such as a cold, may not be so simple, which I am now more than sure that most post-transplant patients are well aware of.

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.

September 18, 2011

I was re-reading the post from last week where I talked about Dad, and a few more memories crept to the front of my mind. 

Particularly, when we would take a ride into Boston from the South Shore.  Dad, would sometimes take us with him if he had to check out a job that he was going to be doing for someone the next week, to determine what he would need for materials and man power.  I vividly remember during those rides he would say to us: “Look up there, I did that one”, as he would point to the John Hancock Building referring to the fact that he helped build that building.  And this would go on as we drove around and about the city…Dad’s mark, or stamp, if you will, was everywhere – he literally helped to build the city of Boston, and he was damn proud of it!

Dad was also very involved in his church, Holy Family Church in Duxbury.  If there were three things that Dad was very proud of, that set his legacy in place, sort of his own version of the Holy Trinity of the Father, Son and Holy Ghost (Dad would always say Holy Ghost as opposed to Holy Spirit), was his Family, the end result of the work he did, and his Faith.

Dad had a lot of faith, and was very involved in the church, from Parish Council to being an usher at the 10:00am Sunday morning mass, to being a part of the Building Committee when it came time to build a new and bigger church for the community.  In fact, it was with the new church that the three arms of his Trinity came together one day in a sort of Perfect Storm for him, and I wish I could find the picture of it to show you.  One day when the new church was nearing completion and getting ready to open, Dad, with Tommy helping him (Family), laid the cornerstone (the result of the work he had done) on the new church (a symbol of his Faith).

But one day long ago, it was brought to Dad’s attention, that there were senior citizens in town who wanted to attend church, but did not have a means of getting there.  As soon as Dad heard this, he began to show up at the Senior housing complex every Sunday morning before the 10:00 am mass and squeeze as many seniors into his car (sometimes truck – that was a sight to see!) and off to church he would go, and then he would return his “girlfriends” (as he use to refer to them as) home afterwards.  At first, it was one senior, then two, before long it was four, sometimes five, seniors he would bring to mass every week.

This selfless act continued for several years.  Suddenly, there were days when there were too many “girlfriends” to fit into his car.  At which point he began to ask for help, and others from the parish stepped up to help these seniors.

These two nuggets from Dad’s glory days got me to thinking about what one person can do.  What can one person accomplish when they are part of a larger group with a common goal.  Obviously Dad did not build the City of Boston by himself, he was one of many.  He did start the effort to bring his “girlfriends” to mass every week, and built it up so that there was a small team of drivers.

What can one person do?

Well, one person can do many things.  And when it comes to Diabetes, if that one person is me or you, there is so much that we can do, such as educate, advocate, and provide support and friendship.  Let’s take a look.

Educate

With me, for the longest time, when it came to my Diabetes, I just wanted to hide in a shell and not give anyone a chance to ask me questions about my Diabetes.  I had some distorted belief that if I did not talk about it, somehow no one would ask about it, or ask those questions like, “Why are you going to the bathroom a lot?”, or “How did you catch your Diabetes?”, or “Why do you do that finger stick thing so much?” or “Are you allowed to eat that?” or “Can you do your Diabetes thing (or stuff) somewhere else?” or “My grandma had Diabetes, and she ate cake all the time, why don’t you?” or “Will you die if you eat this candy?” or “My mom knew someone who died once from ‘beetes’, how long do you have to live?” or, well I could keep going but you get the point…and I’m sure you could probably add to this list as well.

But there was a point, maybe about fifteen years ago, when I was at work…I remember this vividly… the main office of the company that I was working for at the time was a converted house, so I was sitting in the kitchen getting something to eat, and it was about two in the afternoon, when the secretary, Helen, came back to ask me a question.  Helen said, “Would you mind talking to a gentleman that comes to the office nearly every day about Diabetes, since you have had it a long time and it seems like you know what you are doing?”  For a second, all I was focused on was that backhanded compliment.  Then I snapped out of it and said, “Sure.”  How could I possibly say no the secretary (nowadays referred to as Office Manager), after all she was the one who was the glue that held the company together – all secretaries/office managers are like that, they are the ones that really keep all companies afloat and running smoothly…forget the presidents, CEO’s and managers, it is most definitely the secretaries.

So, I am thinking Helen is going to bring some salesman who calls on the company to sell office products or something like that.  No, what I see come around the corner was a man dressed in brown shorts and brown collared work shirt – it was, Jim, the UPS® guy !!!  Of course it was, who else comes to the office nearly every day?!

Jim walks in and I invite him to take a seat, which he replies, “Thank you.”  I said to him, “So, Helen tells me you have some questions about Diabetes.”  Jim seemed a little nervous, and said, “I don’t want to take much of your time, but yes, I have a few.”  “Great”, I said, “Fire away, I’ll answer what I can for you.”  And it was at that instant, that, at least when it came to Diabetes (I was still tremendously shy for almost every other part of my life), that it seemed as if I had stepped from the shadows and realized that it was ok to talk about my Diabetes. 

Since that day, I understand and appreciate that if someone is asking a question about my Diabetes or Heart Disease or Kidney Disease, that it must mean that they are curious for a reason and that I should, to the best of my ability, share them an answer based on my experience. 

It’s not that I am obligated to share my experiences now, it’s that I want to.  It’s ok to want to keep your Diabetes experiences to yourself, but for me it has been a freeing feeling.  To know that I am able to help someone is a great feeling.  People ask questions for reasons we may never know – they could feel like they are showing symptoms of Diabetes, Heart Disease, Kidney Disease, Neuropathy, you name it; or they may have a family member with one or more of these disease and want to know what that family member is going through…it is something we may never know.

Nowadays, and nearly every day, you can’t turn on the TV or radio, or open the newspaper or get an email in your inbox, that doesn’t have something with Heart Disease or Cancer.  The American Cancer Society and the American Heart Association does a fantastic job of getting in our faces about signs, symptoms, personal stories, etc.  In fact, I have called a particular business more than several times and if I am ever put on hold, there is a reminder in the recorded message for women to schedule their annual mammograms…its brilliant, because you are a captive audience.  But I dare you to look, let’s say over the next week or so, and notice how often you hear or see commercials or adds for something related to cancer or heart disease – this would include calls for support, like walk-a-thons, runs, etc.

Diabetes, in my estimation, does an ok job educating the general public about the disease and the diseases the spring from it, like heart disease, kidney disease, blindness, nerve damage (particularly in the feet), but it can always do better.  And for it to do a better job of educating, we may need to take it upon ourselves to make others aware.

Advocate

I feel that one way Diabetes can be moved more to the forefront is if we all do something to advocate for the disease.  I know there is a small segment of the Diabetic population that regularly advocates for Diabetes research and funding.

There may be a general feeling among most of the Diabetic population that says, ‘yes, I am going to do my part, I am going to write letters, I am going do this, or do that…”  What happens?  Life happens.  The kids start screaming, or you need to get dinner ready, or you have to drive Bobby or Susie to soccer practice; or there is a big project at work that is taking up a huge chunk of your time, and you are barely getting any sleep, let alone spending time with your family.

I get all of that.  I even include myself in that category of those that say they are going to do something, but never end up getting around to it.  We have to do better, myself included.  I don’t want to ever have to depend on insulin again, unless it is being made by my own body.  Before I went on the pump, I estimated that to that point, I had given myself something in the neighborhood of 20,000 insulin injections over the years – and I know there are others out there that have been living with the disease for much longer that could double, triple or even quadruple my number. 

There is something wrong with that…That is not right.  We need to stand up and fight for ourselves, and fight for all of the Michael’s, Linda’s, Christine’s Reyna’s, Mary’s, Jim’s, Cora’s, Dina’s, or _________ (insert your name and names of others you know).  We need to fight so that we get to see a cure in our lifetime.  Just think of the ripple effect a cure for Diabetes would have throughout the world – FEWER people with a risk of heart disease, FEWER people requiring dialysis or kidney transplant (or both), FEWER people losing their eyesight, and FEWER people losing toes or limbs due to severe nerve damage.

Support and Friendship

When I first started this blog, I was talking about my upcoming kidney transplant, there were two people who shared with me their experiences of what they had been through or were going through – Cora from Canada and Dina in Kuwait.  I got other words of encouragement along the way as well, but it was Cora and Dina who seemed to help put me at ease a little (as much as possible), and that is something that I appreciate so much more than I have ever been able to tell them.

Several months ago, I was contacted by a wonderful, but scared, woman from Kansas, whose name is Reyna.  Reyna has had Diabetes for a short time, but has already had to deal with nasty complications that many of us have gone through (or hope to put off for as long as possible).  Reyna was scared, and I got that, I understood…and since that day back in July, we have been working together to help her regain control of her Diabetes, which she is doing a great job of and that I am very proud of her for.

And that, in a nutshell, has what this blog has become, people helping people, whether they are next door, several states away, or half way around the world.  As I am sure most of you are aware, you can’t deal with Diabetes/Heart Disease/Kidney Disease/Blindness/Nerve Damage alone – we have to help each other…and when you do you never know what support you can provide and what incredible friendships you can forge!!!

Where Do We Go From Here?

Dad was one part of his family…but he could not make it work without Mom.  Dad worked many facets of the construction business…but he was most proud of the end result of a job.  He was one man who wore many hats (or construction helmets) over his career, but he could not do it without everyone else who worked those jobs as well.  Dad was one part of a building committee and parish council of his church and impromptu transportation coordinator for his “girlfriends”…but he couldn’t have accomplished what he did without other members of the church.

I started out with the basis of what one person can do, and Dad did a lot that a son, a family and a community could be very proud of.  And like Dad, we have our own sort of Trinity, and like they use to say on the old TV show (and the more recent movies) ‘Mission Impossible’…”If you choose to accept it !”

What To Do…

·         Educate – Talk about your Diabetes, and the fact that you have needed, or could need, a kidney transplant because of it, or have needed bypass heart surgery because of it, or you have lost vision in your eyes because of it, or you have lost feeling in your feet because of it (and subsequently could need or have needed amputation because of it).  Let others in on your experience…soon they may turn those dumb questions into smart, well thought out and compassionate questions.  You could also let them know about this blog.  In fact, I dare you to forward it to everyone in your address books (and all of those contacts to do the same) and they can all follow us on the Facebook page by “Liking” Life On The T List, or following it on blogger.com from this link: http://michaelburketransplant.blogspot.com

·         Advocate – Again, this is an area I personally have to work on myself.  We can contact our local Diabetes chapters and ask what we can do to help them with their efforts.  We can also get on the phone or e-mail and contact our local, state and federal representatives and senators and tell them they need to step up to the plate for funding for Diabetes research for a cure.  To get you started, here is a link to the Federal Congress: http://www.congress.org/congressorg/directory/congdir.tt .

·         Support And Provide Friendship – This is as simple as it sounds.  There is someone out there just like you that is feeling the same things you are feeling, experiencing the same or similar things you are thinking…when they enter your life, help each other out !

By ourselves, we can be quite powerful…but when we play our own version of the old telephone game – you tell one person, they tell someone, they tell someone, and so on and so on, we become an extraordinary powerhouse and we can accomplish extraordinary things !!!

That, my friends, is what one person can do…we are all capable of it !!!

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.

September 11, 2011

Today, America stops to remember and honor the 2, 977 lives that were lost on September 11, 2001 (and on subsequent days due to injuries or illnesses sustained that day), when America was attacked by terrorists.


It has been ten years since that fateful day, but for many it still feels like yesterday.  There were husbands, wives, sons, daughters, aunts, uncles who perished.  And lest we forget the firemen and police and all of the first responders and rescue and recovery workers who gave selflessly of themselves for the sake of others.

When it comes to the Boston/New York rivalry in sports, I am right there rooting for the Red Sox, Patriots, Celtics and Bruins.  But today, there are no rivalries.  Today we are one.  Today I am not rooting for the Red Sox to come back in the standing and take the American League East from the Yankees.  No, today, I am rooting for all Americans…Today, we are one.

I am also rooting for all of the children who never had a chance to see or grow up with their fathers, as they were born after September 11, 2001

I am also rooting for a very special young lady, or at least her spirit.  Her name is Christina-Taylor Green.  If that name sounds familiar, it should.  Christina-Taylor was a victim in the shooting of Arizona Representative, Gabby Giffords earlier this year on January 8th.  Christina-Taylor was born on September 11, 2001.  In the midst of the country being in turmoil, there was a little bundle of hope coming into our lives.  Even at such a young age, it was said that Christina had aspirations of wanting to go into politics.  I can only imagine the spirit she would have brought to the political world.

Christina-Taylor may have been a victim of that shooting in Tucson, AZ, but she still lives today because of a courageous and brave decision her parents made.  Christina-Taylor’s parents made the decision to have some of her organs donated, saving the life of a young girl in Boston.  Christina-Taylor had thoughts of making a difference in the  world…in my mind, she did…she allowed another little girl to keep living.

As we remember all of the victims September 11^th, and their families, as well as Christina-Taylor and her family, if you are looking for a way to honor them, do so by donating blood or signing up to be an organ donor…the life you could save could be your son or daughter or mother or father…or it just might be someone you have never met, but will have a lasting bond with.  Please consider donation today as a tribute of remembrance.

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.

September 6, 2011

Today, I saw Dr. P.  It was my three month post transplant follow-up appointment, one day shy of my actual anniversary. 
I don’t want to say that the appointment was monumental, although to me it sort of has that feel.  But, no, I will save that word for a greater anniversary date…maybe I will pull it out for the one year anniversary, that may be a little more appropriate.  Today, I will stick with the word significant, that seems to fit nicely.

Reaching this point is significant for me for so many reasons.  For one, Mom has gotten to see me live through the surgery and recover well from it.  She once said to me, when there was a question whether or not Tommy would be able to donate or not, she said, “I know there is a kidney out there for you if Tommy can’t do it, but where will it come from, and more importantly WHEN will you get it?”

I was at such a huge loss for words…All that slipped my lips was, “I don’t know.”  That was the first time I had seen any hint of resignation from her, it crushed me.  I just had to get up and leave the room.

So, Mom, I dedicate tomorrow, my three month anniversary, to you.  You have been a rock in our family for so long, stood by all of us on good days, bad days and really shitty days.  Thank you for not giving up or giving in.  I feel comfortable speaking for Tommy and Christine when I say thank you for everything.

Mom and Dad on their wedding day, June 1963

So, back to the appointment…Dr. P. comes into the exam room with a huge smile, and says “congratulations on your three month anniversary”.  I thanked her and then she threw out that question that I spoke here about earlier this Summer – “So, how are you feeling?”

I could feel a huge smile come across my face as I said, “I feel good”, resisting the urge get up and yell out those same words like James Brown use to.  Instead, I just said, “No, that’s not right, I don’t feel good, I feel GREAT!”  Dr. P., now beaming, said, “That is so wonderful, I am so happy”.

And before she could say another word, I jumped in and said, “It is so amazing how well I feel today, as compared to three months before the surgery, or even six months before.”  I explained to her that, especially in the last two years leading up to the transplant, that felt like crap (I wanted to say like shit, but I was trying to keep it somewhat professional), only I didn’t know I was feeling like crap because everything felt normal at the time.  I don’t know who was happier, Dr. P. or me.

I remember hearing from Cora (in Canada), who follows this blog, well before the surgery, and she told me that I really wouldn’t believe the difference that I would feel after the surgery…and she was soooo right.  I just never knew how sick I was before because kidney disease is such a slow, plodding disease that you don’t notice that you are really that sick.

Mom, again, thank you.  There are a great many people that I have to thank, and one day I hope to personally do so with each and every one of them – for their love and support for me, and Tommy, and for the same to you and Christine.  Some say it would be impossible to thank that many, but that is a challenge that I gladly accept.

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.