About Me

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Kingston, Massachusetts, United States

Tuesday, August 30, 2011

August 30, 2011

July 2, 1941.  To many, that date probably doesn’t have a whole lot of significance.  But to me, however, it does.
On July 2nd in 1941, one of the greatest men to ever walk this planet, in my humble opinion, was born.  Thomas Burke was the first child born to Thomas and Margaret Burke.  Thomas was proudly raised in Knock, County Mayo, Ireland.  Thomas would later become known to me simply as Dad.

Dad came to the United States at the age of 17 with my grandfather, who we affectionately called Poppop.  The remainder of the family would follow with Mommom (my grandmother), and Dad’s other two brothers Bernie and John, and two sisters, Helen and Mary.  They would all eventually settle in Somers Point, NJ (maybe 20 minutes to a half hour from Atlantic City, depending on who was driving and whether or not you timed the traffic lights correctly).

Dad learned to work and work hard by emulating Poppop.  He was introduced into the world masonry before leaving Ireland, and continued with that line of work when he arrived here in the United States.  Masonry can be tough, grueling work, but Dad enjoyed it, at least that is what he made us believe.  It allowed him to provide for his family, something he was extremely proud of.

Dad was the strong, silent type.  He reminded me a lot the character Sheriff Buford Pusser from the 1973 movie Walking Tall.  Although, Dad never carried a four foot hickory club.  He did however, fight for what was right, and tried to do what was right for his family, church and community at large.

One of Dad’s greatest assets, was the fact that he was a great teacher…although, I will admit, at the time, living his lessons, may not have been the most enjoyable…but looking back, they provide some very fond memories. 

One in particular that will stick with me forever has to do with math homework.  Dad had a brilliant mind.  From his experience being out on the jobsite, and reading plans, he had a knack for figuring many things out in his head.  I may be sitting at the dining room table after dinner working on my math homework (and I am the world’s worst when it comes to math), and I would be struggling to find the answer…Dad would come along, look at what I was doing and say something like, “the answer is 42”, or something to that effect.  I would then ask how he got that, and we would just say – “it’s right there in front of you.”…”yes, but I need to use this formula”, I would say…and he would come back with, “You don’t need this convoluted formula.” 

This would going on, back and forth for a while, until I would just say…”ok, I understand it now”, when, in fact, I really didn’t.  Amazingly, when going over the homework the next day in class, Dad always seemed to have the correct answer!

Dad taught me the meaning of hard work, and if I really wanted something, I would need to put the time in to get it.  Being a bricklayer (a mason) was in his blood, and it was a way for him to also make some extra money for the family by doing small jobs on the weekends – jobs like fireplaces, chimneys, outdoor brickwork – essentially anything brick or block related that a homeowner or small business owner would want to rebuild a part of their house or business.  I learned everything from how to mix mortar, to laboring, to bricklaying, and that at the end of the day I would be paid a fair wage for the amount of work and hours that I put in.  There was no easy way to earn money working with Dad, you got what you earned, which was fair.

I also learned something about Dad from the other bricklayers and laborers that he employed on the weekends, and that was, as hard as he made them work, they had a tremendous respect for him.  Not only was he a fellow bricklayer or a boss to some, he was a brother (or, in some cases, a father figure) to them.  He cared for their families and how they were as human beings.  If he knew someone was in a tight spot for money, and he had an opening on a small job on the weekend, he would be the first to jump in and say, “Do you want to earn a few bucks on Saturday?”

He also had a lighter side to him as well…it wasn’t all work on the weekends.  There was a time where he got tickets to a Red Sox game, and he took myself, Tommy and one of Tommy’s friends to Fenway Park.  These were great seats, on the first base side, just to the home plate side of the Red Sox dugout about eight to ten rows back.

At one point during the game there was a foul ball by Rick Burleson, the Red Sox Shortstop at the time, that was hit off the façade above and behind us.  As most people do at baseball games, everyone tries to catch the ball hit into the stands.  Like any kid my age then, I was maybe 12, I brought my glove with me, with hopes and dreams (like any kid) of catching a foul ball.  So, the ball hits off the façade and I lose it in the sun, but like everyone around me, I stick my hand up to catch it.  I was absolutely floored when I looked in my glove and saw the ball resting there in the webbing.  As any kid would feel, this made my day, my week, my year, MY LIFE!  After the game ended, Dad said, “let’s go!”  And we headed towards the dugout…he was trying to get Rick Burleson to sign the ball for me.  Unfortunately, he didn’t, but looking back on that day, I love that Dad tried.

I also have great memories of Dad taking me fishing.  When I was younger, we would go to the Powder Point Bridge in Duxbury, Massachusetts.  I will say that Dad was amazing at building a wall, fireplace or chimney with brick and mortar, but when it came to tying a hook to a fishing line, let alone baiting the hook, Dad needed a little practice.  But that would not stop him from taking me to fish, mostly for flounder.  I don’t think we actually ever caught anything, but the time we spent together was priceless.  There were times when we had the fishing line cast out into the bay and we would just sit there waiting for a hit on the line…both of us silent and looking out towards the water (ok, I was a little small, so I would climb up on the side of the bridge), very few words were spoken, but we had the greatest time.  How could I not have a great time, I was with my Dad.

It was this view of life, and the way he lived his life, that would help him become the backbone of our family and help Mom raise two kids with Diabetes and another that has grown up to be just like him in many, many ways.

Unfortunately, I can remember all too well spending time in hospitals for either childhood Asthma or Diabetes.  But Dad was always right there – always – even if you were asleep and didn’t know it.  He would often stop by the hospital very early in the morning, well before the posted visiting hours, and stay for a little while, and just sit with me, holding my hand while I slept.  He would then slip off to work, to some jobsite where he was building the face of Boston one brick at a time, or one block at a time…put in a long day and then return to the hospital, often before going home and just sit in the chair next to the bed.  There were times when I would look over at him and he would be asleep in the chair, but I didn’t care because he was there, and that’s what counted for me.  And each time before he left, he would lean over and give me a kiss on my forehead and then say something like, “See you tomorrow.”

As I mentioned before, Dad was the backbone of our family.  One of the main reasons for his strength, was his faith.  Dad had a deep rooted faith in God and there wasn’t much, if anything at all, that was ever going to shake that tree.  In fact, he once took Linda to Lourdes, France and to the Basilica in Knock, Ireland (he also took me here), looking for a miracle to cure his little girl.  And although they returned home with no miracles to speak of, I’m not entirely sure that was really the case. 

You see, to me, Dad was really the miracle for us.  He wanted the best for us – the best medical care, the best schools, the best that he could provide literally working his fingers to the bone.  He was the one who built our strength.

Dad told me that it was going to be a hard road with Diabetes, but he also made me believe it was going to be a long road, and he meant that in a good sense.  Meaning, he wouldn’t allow me to give up fighting, despite what we saw the disease do to Linda.  When Dad spoke, you did nothing but listen.  It wasn’t that he commanded that respect, but he instead earned it from you, and you gladly gave it.  So when he told me this I listened very intently.

On September 11, 2005, Dad was the one in the hospital this time, arriving there several days before with an infection.  It was later in the evening.  Tommy had just left to take Mom home after visiting, and Christine had stepped out of the room.  The lights were turned down low.  Dad was failing, his organs were shutting down.  This time, it was me who was holding his hand, telling him it was going to be ok.  But I also added, “it’s ok to let go now.”  And I think I made some crack about Red Sox losing to the Yankees that day, but also said it didn’t matter because he had seen the Red Sox win the World Series the year before.  I then said to him that Tommy and I would look after Mom as best we could, and again said that it was ok for him to go.

About a minute later, with tears streaming down my face, much as they are right now, a nurse entered the room and shut off the monitors and said that all of his organs had shut down and a doctor would be in soon to confirm.  With that, I leaned over and kissed Dad on the forehead, and said “Thank You.”  I was thanking him for the life that he gave to Mom, Tommy, Linda and I; as well as to Mommom and Poppop, Aunt Mary, Uncle Bernie, Aunt Helen and Uncle John, and to his many uncles, aunts, cousins, nieces, nephews, fellow bricklayers and parishioners he would see at the 10:00 o’clock mass every Sunday morning at Holy Family church.

Dad was only around briefly when my kidneys began to fail.  He knew that someday I may need a transplant, but at that time, none of us knew when that might be.  It may sound a little strange to hear, but when I entered the operating room this past June, with Tommy already in surgery, there was a certain peace that I felt.  Some might say that it was the pre-surgical drugs kicking in, which it very well could have been…but, in a sense, to me anyway, it was Dad (as well as Linda) being there with me like he been so many times before.

Dad, thank you…thank you for the miracle that you were.  I love and miss you.

Dad enjoying himself at Mine and Christine's wedding.
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.

Wednesday, August 17, 2011

August 17, 2011

As most of you can tell by now, Linda was pretty special in my life.  Linda was probably my first real hero…ok, so Jim Rice from the Boston Red Sox was maybe my original hero when I was ten…but when I knew better, it was Linda.  She put up with a lot, not only from Tommy and I (playing the role of annoying little brothers), but in her struggles with Diabetes and how she pushed through those struggles to realize her dream of becoming a nurse.
Linda after receiving her Nursing Degree from Simmons College
But several years before she graduated nursing school, she used her keen intuition and her many years of experience with Diabetes, and saw something in me that I was not going to like, nor would she want me to experience.

To this day, I still don’t really know how, but something told Linda, or was nagging at her, that she should start testing my blood sugar.  At first, I just thought it was novel…she was in her first year of nursing school, and she was going to be using me as some college mad-scientist experiment.  Then, it started to hurt, all of those damn finger pricks.  After a few days, I wanted it to stop, but Linda would have none of it.  This constant testing would go on for two weeks, leading up to, and through, Christmas.  Linda, of course, had a suspicion that I was either developing Diabetes, or already had it.

On the morning of December 28, 1983, I went to work.  I had a job at Sweetser’s General Store – at the time, it was the oldest operating general store/retail store/food store in the country.  It was actually a pretty cool place – I worked in all of the departments, produce, bakery, grocery, and the liquor department…you name it – except for the meat department, they were very particular about who used the meat slicer…it is for that reason that today I still have all ten fingers!  One time, I was up in the old storage attic, which in the old days was used to store bails of hay that were sold and hoisted down onto waiting carriages below.  And while I was poking around up there, I came across several boxes of receipts, and I was amazed that most of them were dated in the late 1600’s/early 1700’s.

So, on this particular morning, when I went to work, Mom was going to be calling Dr. Gaynor, our pediatrician.  She did so, and by 9:30 she was at the store looking to take me down to see Dr. Gaynor.

I sort of had it in my head that this was going to be the case.  In fact, I remember not wanting to talk to anyone or be around anyone, so I volunteered to go to the upstairs stock room and put away the weekly Coca Cola® order that had come in. 

I was in my own little world, secretly hoping that I wouldn’t have to go see Dr. Gaynor.  Then reality struck…as I was taking cases of club soda and ginger ale off the conveyor belt and stocking them neatly, I heard Charlie, the store manager, yell up to me saying that Mom was here.  As I poked my head around the corner to look down the stairs, there was Mom standing with Charlie, and Mom telling me that we had to go see Dr. Gaynor.  I said that I would be right down, and I stepped away from their view.

I went back to the area of the conveyor belt where I was working and just stood there for what felt like an eternity, but in reality was only about 30 seconds.  I needed to let my frustrations out, but I did not know how.  Without realizing it, I had put my hands in the handle cut outs on a case of club soda.  When I knew that I had gripped it, I didn’t want to let it go.  But just then I took a deep breath, and in one motion, picked up the case, turned and threw it as hard as I could against the back wall, which was about ten feet away.  The case tore apart as it hit the wall, sending one liter bottles in all direction, cracking at least one cap so that now I could hear a “SSSSsssssssss” sound as club soda was being sprayed all around.  I then removed my apron and went down stairs and Mom and I went to see Dr. Gaynor.

Sitting in Dr. Gaynor’s office about a half hour later, Dr. Gaynor looked at me and said, “Based on what I see what Linda has been doing with you, I would venture to guess that after we do some blood work, it will confirm that you have Diabetes.”  These are not the words a sixteen year old wants to hear, let alone, anyone of any age.

Trying to reassure me that everything would be ok, Dr. Gaynor then told me, “With all of the advances in Diabetes being talked about, it would not surprise me if there was a cure for this in five to ten years.”  He truly believed that, because what was being talked about a lot back then was the possibility of islet cell (insulin producing cells in the pancreas) transplants.  However, now almost 28 years later, the advances in islet cell transplants as a means for a cure, have been few and far between.  As of today, there still is no cure for Diabetes to speak of.

Dr. Gaynor then sent me to Jordan Hospital to be admitted, and he said he would be there in a little while to check on me.  After being admitted, I was sent up to a room in Pediatrics, one of the various rooms I had been in over the years because of my asthma when I needed treatments.

One of the first things one of the nurses did, was check my blood sugar…it was 810!!!

And so began my journey with Diabetes.  After getting my sugars under control by the next day, one of the nurses came in and said that she was going to teach me how to give myself an insulin injection – she had with her a syringe, a bottle of insulin and an orange…yes, an orange.  She was actually very good in her explanation.  She explained about the syringe (why one is a 1 cc and others are ½ cc), then she moved on to the insulin.  I first started out on pork-based insulin, so she explained to me the differences between pork and beef insulin.  Then we practiced drawing out varying amounts of insulin, making sure not to have any bubbles in the syringe, and if there were, how to get rid of them.

Once the nurse felt I had a good handle on drawing up the insulin, it was time to give it to myself and out came the big naval orange.  She had me inserting the syringe into the orange about 20 to 25 times.  Apparently the orange was suppose to simulate my skin and how I would inject into myself, though I don’t ever remember my skin feeling like the outside of an orange!  I was still very bummed out by the whole thing, but my solace came later that evening when the hometown Boston College Eagles, and miracle quarterback Doug Flutie, took on the Fighting Irish of Notre Dame in the Liberty Bowl.  Unfortunately, BC lost 19-18, but that wasn’t the worst part of it.  The worst part of it, was that I had to watch the game on a tv the hospital provided – so, not only was it not a very clear picture, it was only a six inch screen!!!

In the years that followed, leading up to 1989, there were a lot of ups and downs, but through it all, Linda was right there with me…I learned so much from her.  Linda was the first to save my life, and now, by providing the gift of one of his kidneys, Tommy, has again saved my life.  One could not have asked for a better brother or a better sister.  Tomorrow, August 18th, would have been Linda’s 47th birthday…wherever you may be Linda, Happy Birthday!!!  I Love You!!!

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

Sunday, August 14, 2011

August 14, 2011

To this point, my focus has primarily been on my kidney disease, the resulting transplant, and now life after the transplant.  I have alluded to the fact that my kidney disease was brought on by Diabetes, but I have not yet explored those days back in 1983 when my life changed forever.

But actually before I go back to 1983, I really need to start back even further, around 1970, when I was three…this is really when I began living with Diabetes.  How is that possible, you ask?  That is when, at the age of six, my sister, Linda, was diagnosed with Type 1 Diabetes.  Linda may have been the one who physically had the disease, but Mom and Dad, Tommy and I all lived with it and coped with it as a family.  Even our extended family was, and still is, very supportive.  I can’t think of a better family – aunts, uncles, cousins, grandparents, etc. – to be a part of.  It was a learning experience for all of us, and we did it together.

Six years old.  I can’t imagine being that young, or even younger, and having to deal with this disease.  I thought it was hard enough being diagnosed at 16.  But, I guess, in some ways, Linda was able to deal with it a little easier because it was now going to be her way of life, our families way of life, and when you are that young you don’t know any better than what your mother or father are telling you or raising you.  It also helped Linda to have friends who did not judge her, including Jodi, who would become Linda’s best friend for life, and like a sister to Tommy and I, as well as a second daughter to Mom and Dad.

Linda and I gave Mom and Dad a lot to deal with when we were younger.  With Linda being diagnosed at six, and, for about the two years prior to that, me developing childhood Asthma (which included many trips to the hospital because I couldn’t breathe – that was a lot of fun…not).  Mom use to say that we definitely made life very exciting.

So, now at six years old, Linda began experiencing life with two, three, sometimes four shots every single day, and having to learn to recognize high and low blood sugars, and how to treat those moments when they happen.  She would have to test her sugars not on nice little hand monitors that we have today, but with test strips she would have to dip into urine and then try to determine what her sugar was based on the color the test strip turned – figuring out the color of the test strips was no easy feat either when the color could have easily been one of two to choose from (though she would get to use a monitor later on, but they were huge compared to today’s models).

Though, through her years living with Diabetes, when she was young and as she got older, I never heard her complain much about it, even as it was taking a toll on her body.  Linda endured the pain of neuropathy, retinopathy, and nephropathy, all nasty, nasty side effects of Diabetes.  I remember Linda crying in pain because her feet hurt so much because of neuropathy, or screaming in Dr. Ryan’s office as he gave her laser eye surgery.  Dr. Ryan was a savior to Linda, however, as he saved her eyesight, saved it.  Linda was going blind from the effects Diabetes was doing to her eyes with blood vessels in her retinas hemorrhaging like you wouldn’t believe, and Dr. Edward Ryan, God bless him, saved Linda’s eyesight, and later has done the same for me.  As with the nephropathy, the wonderful form of kidney disease brought on by Diabetes (yes, I am being sarcastic), it did get to the point that Linda did need a kidney transplant.  However, at that time Linda was referred to the transplant center at the University of Pittsburgh, where they wanted to do a kidney/pancreas transplant.  The kidney/pancreas transplant, now much more common, was still in its experimental stages back then.

Dad use to lovingly call Linda a “determined little piss ant”, but she was still his little girl and nothing was ever going to change that (as a tear wells up in my eye as I write that).  It was Linda’s determination that made her who she was.  Ever since Linda was a little girl, she always wanted to be a nurse.  It could very well have been because she was in and out of hospitals and clinics like the Joslin Diabetes Center in Boston, but honestly, I don’t really know why Linda always wanted to be a nurse – foolishly, I never asked her.  But she was determined, none the least, and there was no way in hell anything was going to stand in her way if she could help it, not even Diabetes.

I remember when Linda was going through school, she was a nursing student at Simmons College in Boston, and it was during her senior year, and she was having a lot of trouble with her eyes.  When her eyes were not as bad, Linda had made up flash cards, like many students do, to help her study.  But as her eyes got a little worse, it was difficult for her to use the flash cards.  That’s when she recruited Tommy and I to help her study.  Tommy and I would take turns going through the flash cards with Linda so that she would not have to strain her eyes…I swear, to this day, Tommy and I should be nurses as well with everything we helped Linda study for.  And to boot, I can’t not stop and think about Linda and all of the studying we did, whenever I hear the song Always Something There To Remind Me by the 80’s band Naked Eyes, which Linda loved to listen to when we studied, that and anything Motown!  Although, if I were to choose a song today that embodied how Linda lived, it just might be The Edge of Glory by Lady Gaga.

Linda successfully graduated from Simmons, passed her nursing boards and was hired as a staff nurse at Children’s Hospital in Boston.  However, on March 14, 1989, while on the first day of vacation in West Palm Beach, Florida with another nurse from Children’s, Linda passed away.  Officially, it was said that her heart stopped.  Although, I know that Linda’s heart has never stopped beating in me or Tommy, or Mom, or Dad before he, himself, passed away in 2005, or in anyone else in our family.  Linda died at the hands of the insidious disease known as Diabetes.

Flash back now from 1989 to December 28, 1983……

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.

Wednesday, August 10, 2011

August 10, 2011

As I have come to find out over the last several years, your kidneys, play a huge role in how the rest of your body functions, not just as it relates to Diabetes and Kidney Disease, but in everyday life of every person.  Everybody knows that the heart pumps oxygenated blood though out your body constantly throughout the day…in a sense, it is your main engine that makes you go.

I say your main engine, because the body also has smaller, but no less important, engines that help the body go.  And one of the critical smaller engines is the function of your kidneys.  The kidneys are essential in the urinary system and also serve functions such as the regulation of electrolytes, maintenance of acid-base balance, and regulation of blood pressure (by maintaining salt and water balance). They also serve the body as a natural filter of the blood, and remove the junk that build up in our blood and are diverted to the bladder to be expelled from the body. In producing urine, the kidneys excrete this junk, such as urea and ammonium; the kidneys also are responsible for the reabsorping water, glucose, and amino acids; and they produce hormones like calcitriol, erythropoietin, and the enzyme renin.

So it is a big deal when this engine begins to shut down.  Think of the engine in your own car…we change the oil and replace the oil filter on a regular basis, every 3000 to 5000 miles.  Ok, so we are suppose to do that every 3000 miles or so, but there are few of us who do that.  Come on, admit it, unless you have a reminder from the OnStar® system in your car, or a little sticker in the top corner of your windshield from either the dealer where you bought your car from, or from the last time you went to Jiffy Lube®, you can’t remember the last time you had the oil changed in your car.

As I have gotten older, those reminders are more and more helpful.  But that is not to say that when I was in my 20’s (you know that time – the time of your life when no one can tell you anything because you feel like you already know everything!, or so you would like to think) it wasn’t unusual for me to look at one of those stickers and see that I have about 1000 miles to go before I need to have the oil changed and then forget about it altogether until I see the red “CHECK ENGINE” light come on, on the dashboard.

“Oh, Crap!”, or something like that would come from my mouth, as I now realized that I was now about 4000 miles over from when I needed to have the oil changed.

This didn’t just happen once or twice…no, no, this happened multiple times.  To the point that when I was out on a date we were driving along to whatever restaurant we were going to, and all of a sudden the car sputters…and then sputters again.  I look to see if I have enough gas – yep, plenty of gas.  The car jerks again, and now I start to see a little bit of smoke coming from under the hood of the car…and then one last jerk and the car sputters to a slow painful stop – I had seized the engine!!!

The same thing happens when our kidneys are not working properly…they begin to slow down filtering all of the junk that needs to be eliminated from our bodies, and eventually they seize up…also known as End Stage Renal Disease.

One of the cogs in the kidney engine is the function of the Parathyroid Glands.  There are four of them and they all perform the same function  - regulating calcium levels in our bodies.  When one of your parathyroid glands go bad and makes too much hormone, the excess hormone goes to the bones and takes calcium out of the bones and puts it in your blood. It's the high calcium in the blood that makes you feel bad.

This according to Wikipedia, the Parathyroid hormone (PTH) is a small protein that takes part in the control of calcium and phosphate homeostasis, as well as bone physiology. Parathyroid hormone has effects antagonistic to those of calcitonin. PTH increases blood calcium levels by stimulating osteoclasts to break down bone and release calcium. PTH also increases gastrointestinal calcium absorption by activating vitamin D, and promotes calcium conservation (reabsorption) by the kidneys. PTH affects the perception of well being and absence of PTH can be associated with feeling of fatigue and anxiety.

Hence, feeling tired and feeling like crap when you have kidney disease.  However, generally, I am told, that when the kidneys are working normally, the PTH also runs pretty normal.  When I was at the doctor last week, Dr. P. went over some test results from the previous week.  One was the PTH and the other was a Bone Density test.

With the PTH, she told me that my blood test came back as 138, and normal range is 20 – 50.  She could see the shock that probably came across my face.  She told me not to worry because this was all due in part to the kidney disease and as the new kidney continues working well over the next year or so, she expect that number to drop significantly.  She told me that she has had patients with a PTH of 900 or 1000, or even higher, and said that those patients typically will have much more difficult time getting into the normal range.

According to the Beth Israel Deaconess Hospital Transplant Patient Handbook, Phosphorus is also a mineral found in your bones that is involved in this whole mix.  Think of phosphorus as another cog in the kidney engine.  In conjunction with calcium, phosphorus helps to keep your bones strong.  When kidneys fail, the kidneys lose the ability to get rid of phosphorus and the blood levels of phosphorus can get too high.  This will then pull calcium out of your bones and make your bones weak, increasing the risk of bone disease and fractures.  When my phosphorus level skyrocketed, I was put on a phosphate binder to help my body eliminate the extra phosphorus.  I have to tell you, I have never seen such a huge pill – it was enormous!  I actually asked to be switched to the pediatric version, which was a powder that you added to water, because I had gagged big time on the original pill – it was literally big enough to choke a horse, as the saying goes.

The handbook goes onto say, that if levels of calcium and phosphorus get too high in the blood, you can get calcium deposits in your blood vessels or heart that cause ‘hardening’ and can restrict blood flow. 

Post transplant, the blood phosphorus levels can go very low because the new kidney is doing its job and getting rid of all of the excess phosphorus.

As for the bone density test…well, I originally had a bone density test done back in 2002, but for the life of me I cannot remember the reason why.  Despite my apparent memory loss, it turns out that it was good that I did have that initial test because there was now something Dr. P. could compare to.  So, in explaining it to me, she said that my original test showed that I was on the high side of the normal range, and this test showed that I am now on the low end of normal. Much of this could be attributed to the kidney disease advancing over the years.

This is from Dr. P.’s doctor’s notes:

“Although Michael’s bone mass is within the expected range for age, it has decreased significantly (by 5.1% in total PA spine between 5/20/2002 and 7/21/2011 and by 25.5%  in the total left hip between 5/20/2002 and 7/21/2011).  His calcium and Phosphorus (levels) are normal currently.  PTH is 138 and Vitamin D is low at 20.”

Dr. P. said that it is quite possible that, as mentioned, the PTH could return to normal which means that, with a normally functioning kidney, the Parathyroid Gland will pull less and less calcium from the bones…and if that happens we will hopefully see an improvement in the next bone density test.

I would suggest that any Diabetic, or certainly anyone at risk of kidney disease, have a baseline bone density test done.  I would also make sure that your doctor, either your Nephrologist, Endocrinologist, or at the very least, your Primary Care Physician, is checking your Vitamin D levels, your PTH levels, your phosphorus levels, and your calcium levels.

I have seen several different statistics, but in general Diabetics account for about 40% of all kidney disease patients.  With that being said, being a Diabetic myself, I would urge any an all Diabetics to keep a check on all of their engines in your bodies...you want to get as many miles out of the engines you have before your engine starts sputtering or seizing, and you have to trade in your engine for a newer model.

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.

Wednesday, August 3, 2011

August 3, 2011

As I was in sort of a reflective mood after I wrote the last posting, something caught my eye as I got up from my desk.  It was a medal Tommy received after he finished this year’s Boston Marathon back in April (see picture below). 

Tommy's 2011 Boston Marathon Medal
Tommy gave it to me after he came home from the marathon.  It meant a lot to me that he had given it to me for several reasons…one, he had just finished the marathon, in which he was dedicated to raising money for Joslin Diabetes Center in Boston, an organization that had helped Linda with her Diabetes, and continues to help me with mine.  Another reason, is that it is a constant reminder to me that he was willing to give up a part of himself in order for me to live – not that the six inch scar on my left side with a slightly bulging protrusion just to the right of that scar isn’t a constant enough reminder!

Later that day, I got a message from a very good friend, whom I have come to know through this blog.  In her message, she asked me how I was doing?  And I responded with the obligatory, “I feel really good.”  Although, as I found out, she was not just asking me as if we had just passed each other on the street.  There was something in the tone of her words that made me think that she wanted a real answer, and not for me to sugarcoat anything.

She asked again, this time in a more concerned tone, “How are you feeling?”  Part of me wanted to give her my wise-ass answer: “With my hands”, but something told me I probably shouldn’t.  So, I laid it all out, and in the end, it was sort of cathartic.  Over the course of the last two months, there were times where I would think to myself, “Oh, this is different from before the transplant.  But never, although, as I said, it has only been two months, had I gone point by point comparing how I felt prior to the transplant to how I feel today.

The “How are you feeling?” question was a question that Dr. Hoenig would continually ask me when I went to see her, even more so as we go close to the transplant.  And my answer to her to her was always that I felt fine.  At no point during the last several years when kidney disease was kicking my butt, did I ever feel that it was doing so – I never really felt “sick”.  In my mind, I actually felt so good, that it was extremely hard to believe that I was in need of a life saving transplant.  But that is the thing with kidney disease, most often it is such a slow moving progressive disease, you barely notice the physical outward symptoms, those that don’t necessarily show up in your blood work.

So, here, I felt, would be a good place to also share those kidney disease pre-transplant symptoms to life in the post-transplant world.  Some of you reading this that has kidney disease (or know someone that does) may be able to relate to some of these pre-transplant symptoms, and some of you may have other pre-transplant symptoms that I did not experience.  I don’t know if my symptoms are due in part to my Diabetes or are just common among all kidney disease patients.  As a reminder, I never experienced dialysis (and from what I am told, that is a very good thing), so, again, some of you may have had other pre-transplant symptoms.

So, here goes, in no particular order…

The Feeling Of Always Being Cold – One of the things that failing kidneys do to a body, is that it messes with its temperature regulation.  It can be a serious pain in the ass.  Over the last several years, as my kidney function was declining, I saw my tolerance of cold decreasing as well.  On really warm days, when the air conditioner was blasting where I was working, I would secretly go to the control box and adjust the temperature so that I wouldn’t be as cold.  Conversely, on days when Winter was just hanging on by a thread, as it would fight with Spring to see who would win out that day, days that were probably in the 50’s (after enduring a Winter in the 20’s or below), I would constantly be turning the heat up.  By the afternoon, I would be comfortable, yet everyone else could be heard saying things like, “Who the hell keeps turning up the damn heat?” 

My ability to feel heat got so bad before the transplant that there was a day about a week before hand when it was 90 degrees outside and I was walking around with a heavy Champion® sweatshirt on, and I was still feeling cold.  Flash forward to now…Recently, especially in July, we have been experiencing some extreme heat and humidity, some days even reaching into the low 100’s.  As most people were complaining about the heat, I actually couldn’t have been happier – because I could FEEL it.  And it was the best feeling in the world to be able to turn the a/c up in the car and really feel comfortable!

Dry Skin – One of the other unseemly things your kidneys do when they begin to decline in function, is dry out your skin (as well as, at times make it itchy).  I say unseemly, because there is nothing worse than seeing a fair skinned (I am of Irish decent – I never tan, I just turn red or purple as the first rays come across the horizon and then two day later it’s like I never spent a minute in the sun - ever) man in his 40’s.  Over the years, I have tried numerous moisturizing creams, and nothing ever seemed to help.  I would always get embarrassed, especially when I would just go for blood work and the technician, as she is putting the tourniquet on my arm, and say something like, “my, you have very dry, skin, don’t you?”  In my head, I would answer her with something like: “No shit!”.  This would all be fine, and probably a little normal if it was the Winter, because many people have dry skin in the Winter…but, no, this could happen, whether it was December, May or September.

Right after the surgery, I noticed that my abdomen was extremely dry.  It was almost as if I needed some sandpaper to smooth out my skin (and, no, I didn’t use sandpaper on my skin).  New skin is said to regenerate every thirty days or so.  But my skin was so dry, I was slothing the area constantly…it was like my skin was regenerating every single day. 

Now that I am two months out from the surgery, that area (my abdomen) is still dry, but not nearly as much, and the itching has nearly disappeared.  I was actually told (I can’t remember by whom, though) that the Bactrim (the antibiotic that I was put on after the surgery) may actually have the side effect in some people that makes your skin dry – if I was ever able to hit the lottery as often as I notice a side effect from a medication, I would be a very rich man!  But the best part of all, I am noticing other parts of my body that were dry before, that are now much more smooth and holding onto moisture.  It’s a nice feeling to take off a shirt and not have flakes of skin falling to the floor.  Those of you with kidney disease know exactly what I am talking about, as much as you don’t want to admit that you have noticed a mini snow storm of skin coming from your body, you know what I am talking about…your secret is safe here – I feel your pain!

Being Tired…All The Time – This was the first symptom that I can remember “feeling”.  Gradually, over the last five years, I would get the feeling of being tired more often.  This was much more than the “mid-afternoon crash” that most of us feel.  For me, this came in the form of being in a meeting or training at work, and the dreaded “head-bob” would happen.  You know exactly what I am talking about…you are sitting in that meeting, and without warning, your eyes begin to close slowly…and then it happens - somewhere between consciousness and unconsciousness lies semi-consciousness, just lurking to take over your body. 

You know it is there.  In fact, you try to fight it…you do.  In those few seconds, you fight as hard as you possibly can to hold your eyes open.  But we all know, as hard we try, all of our efforts are futile…and our necks become something resembling Jell-O® for a second, and your head crashes forward, only to snap back just as quickly the next second.  Oh, I know you know what I am talking about…and it just doesn’t happen once, well maybe at first it does, but as your kidney disease advances this scenario can (and does) happen multiple times.

It wasn’t until I was well into dealing with kidney disease that I knew this feeling of being tired all of the time was a symptom of declining kidney function.  But it makes perfect sense…since declining function saps your energy…there are many days that you are wanting to stay up and watch a Red Sox/Yankees game, but you can barely make it through the first two innings before you either fall asleep on the couch or have to crawl into bed!

Two months into my new life, I now know what others meant when they said that I would be amazed to realize that I never knew how sick I really was before the transplant.  It is like night and day…like flipping the proverbial switch.  Immediately following the surgery I was very alert, I didn’t really feel like I had been through surgery.  Now, when the alarm goes off in the morning, I get up immediately (ok, maybe I hit the snooze button once), and once I am up I stay up and feel refreshed – I can’t remember the last time I felt that way.  In fact, I don’t even yawn nearly as much as I use to.

Peeing – I was fortunate before my transplant, in that I was still able to produce urine.  It wasn’t much, but my kidneys were squeezing out whatever pee they could muster up.  As there are other patients who actually stop producing urine, I would find that a little odd and probably hard to get use to.  But since my kidneys were still producing some urine, they were also leaking (or spilling) protein.  There is actually a very easy way to see or notice if you are leaking/spilling protein into your urine – your urine begins to bubble up or foam in the toilet as you go.  The more protein that is in your urine, the foamier your pee will be.  How foamy was my pee?  I’m glad you asked…just prior to my transplant it would actually look like I was running a bubble bath in the toilet, that’s how foamy it was.  Today, I see very little evidence of protein in my urine.  In fact, when I pee, it looks like a calm, back woods stream, just as normal urination should look.

Appetite – If you were to ask my good friend, Paul, about my appetite, I am willing to bet that he would tell you that, historically, he has never seen anyone be able to put away as much food as I have been able to over the years.  However, over the last couple of years, especially the last six to eight months before the transplant, my appetite dropped like a rock.  Funny thing, though, over the years, no matter how much I ate (or didn’t eat), my weight never really fluctuated much between 140 and 150 pounds.  At the time of the surgery, my weight was 140 pounds.

Immediately after the surgery, my appetite shot up like a rocket.  I was sooo hungry.  I could not wait for the surgeon to take me off the clear liquid diet during the first 24 hours or so following the transplant.  Once I was able to have solid food, watch out.  Believe it or not, I was even finding the hospital food appetizing – hospital food!  And my appetite has not let up in the last two months.  I eat healthy due to my Diabetes/Heart Disease/Kidney Disease, but my appetite is also VERY healthy!

Now these were the most prominent symptoms that I had or observed prior to my transplant.  There are others, such as some swelling (especially in my ankles and feet) and balance issues that seemed to improve after the transplant.  Now, I have no idea if my balance improved due to my new kidney, I doubt it but it is an odd coincidence.

As I glance over at the medal once again, if that friend were to ask me right now how I was feeling, I think my answer to her may just be: “I feel…lucky!  Lucky to be alive and lucky to have an opportunity to experience many things that I may not have had the opportunity to do so if I had not received such a great gift!

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.