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.

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.

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.

July 28, 2011

From about the age of two to the age of thirteen, just about every kid enjoys his or her birthday – the parties with all of your friends and family; the cakes (sometimes you may even be lucky enough to have an ice cream cake from Carvel or Dairy Queen); and most importantly (at least to a kid) was being able to tear through all of the presents!  Many times, especially when you were younger, you really didn’t care or know what you were opening, unless, of course, it was Lego’s®,  a Tonka® truck, a Barbie® doll, or an Easy Bake Oven®, all you wanted to do was rip open anything and everything that had wrapping paper on it, and you were sooo bummed when there was nothing else to open.

After you hit thirteen, suddenly you were too cool to celebrate your birthday because now you are “grown up”.  Until, of course, you hit sixteen, when most girls like to have a sweet sixteen party.  Guys really don’t care much for sixteen, except for the fact that this is when they become eligible to get a learners permit in order to drive a car (although they still have to have a chaperone in the car diving with them until they get their drivers license).  The next biggie, maybe not in terms of a party, but the feeling of really being “grown up” is eighteen.  Then the mother of all birthday parties comes at twenty-one.  For most, after we hit twenty-one, at least from my perspective, birthday celebrations go downhill (unless your name happens to be Kardashian).  Well, at least I didn’t really want to pay attention to them much – unless someone is going to give me a big-ass Tonka® truck, and I don’t see that happening anytime soon.

Birthdays come and go, and as we get older many of us don’t want them to come at all, we just want them to go away.  Perhaps, my thinking on birthdays was skewed a little when I was sixteen, which was the year that I was diagnosed with Diabetes.  And not that I was huge eater of sweets, I did like to indulge in a little birthday cake from time to time…ok, maybe not the cake so much as the icing! 

But now it is the mid 1980’s and there is very little in terms of sugar free options for Diabetics.  There may have been one or two others, but I distinctly remember Sweet & Low® put out an ice cream.  When you had grown up on real ice cream, the Sweet & Low version was quite a shock to your system.  It wasn’t much later on that other companies such as Hood® and Edy’s® put out sugar free or no sugar added ice creams, that, honestly, taste very good.  Dunkin Hines®, for a short time, came out with a sugar free/no sugar added cake mix that has since gone away.

Why am I going on and on about birthdays, you are probably asking?  Well, if you remember from my last entry, I made a brief comment that the procedure that I was going through that day was a day before my birthday.  As I re-read that entry, it got me to thinking about how life was at last year’s birthday, as compared to how it is like this year.

At last year’s birthday, I had just been put on the kidney transplant waiting list about three or four months earlier.  Tommy had been determined to be a five out of six antigen match to me, but he was still at the beginning stages of going through the testing process, so essentially he could have been ruled out at any point.  So, this birthday was a little nerve-wracking, to say the least.  What was going through my head was (and as I have heard from others who have waited for a transplant, these feelings are somewhat normal), is this going to be my last birthday?  How many more birthdays do I have left.  I was an emotional wreck, but I tried not to let Christine or Mom or Tommy, or anyone else for that matter, see me like that – this was a special trait I picked up from Dad, he was the master at not letting anyone know how he was feeling most of the time (except for the time when I was about fourteen or so and he taught me how to change a tire, let’s just say that I saw a whole wide range of emotions that day!).

This year was completely different.  The transplant occurred about six weeks or so before my birthday, so the feelings are still quite raw.  I remember after the surgery, even before Tommy made his way down to my room, I was constantly asking the nurses two questions…one, how he was feeling (and they kept telling me that he was in quite a bit of pain), and two, what was the total count up to on how many nurses he had hit on!

Then, finally, Tommy was able to make it down to my room…it was only for about two minutes because of the pain he was in.  But after he left I could feel my eyes well up and I started balling and sobbing.  Yes, I was happy to be alive and have a chance at living life (a quality life at that), but my little brother was hurting and it was because of me (even as I write this, I have a tear welling up in my eye).  I was so grateful, but the last thing I wanted to see was him in any pain, even though we were told beforehand that he may have a little bit more of a difficult recovery initially.  Back in April, when I got the call regarding a deceased donor, part of me happy because I knew if this worked, then Tommy would be spared having to go through the surgery and enduring any pain.

For comparisons sake, comparing the two years is like comparing Tab® and Diet Coke®.  For those of you who don’t quite remember Tab®, Tab® was Coca Cola’s® first attempt in the diet cola market.  Let’s just say, they got much better when they came out with Diet Coke®.

But now that it is a little more than seven weeks since the surgery, Tommy and I are both recovering well. And this birthday means so much more to me…no longer do I see a light at the end of the tunnel, I have actually emerged from the tunnel and there is nothing but bright, blue skies in front of me.  In the words of the 70's rock group, Rare Earth, "I just want to celebrate another day of living!"

Now, if only I had a sugar free birthday cake and a Tonka® truck (you’re never too old for a Tonka® truck)!

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.

July 23, 2011

This is a posting where I risk being a little too graphic, which is not my intention, but nonetheless it is part of the transplant recovery process story that should be told and so I will be as sensitive as I can be because it is a sensitive topic. It is the day when the stent is removed.

For those that have already gone through this, you know of the anxiety that you may have put yourself through leading up to this day.  And to those that will someday experience it, you to, man or woman, may anguish about prior to your appointment – you may not, but then again, you just may – much like I did!

As I mentioned in a previous post, when the surgery was transplant was explained to me in full detail prior to the surgery, I was told of this temporary stent that would be put in place during the surgery.  The function of the stent is to hold the ureter in place after it is attached to the bladder – doing so would allow those sutures to heal.

At first, I did not think much of it when I was first told of it, as the transplant coordinator sort of glossed over the removal process, just simply stating “it’s an easy procedure.”  Then my mind began racing, and suddenly I could not focus on anything else the transplant coordinator was telling me because my heart started pounding as I could see the “red flag” go up as I suddenly began to realize something.

I stopped her from what she was telling me at the moment, and just said, “could we back up for just a moment?”  She obliged, and I began with a deep breath and said, “About the stent removal…how exactly is that done?”

With a smile, she said, “It is a very simple procedure where the urologist will insert a camera with a probe through the urethra and into the bladder that will grab the stent and it will be removed through the urethra.”

Heart is pounding even harder at this point, I am suddenly dreading the stent removal procedure more so than the transplant itself…

Now I know my body well enough to know that the urethra runs through the penis and into the bladder (and with women, it is in the vagina and goes into the bladder – the only difference being…with women it is a shorter route…and I can imagine a shorter route does not necessarily translate into less anxiety).  And speaking solely from a guy’s perspective, this is an extremely sensitive area that we try to protect as diligently as we can from pre-puberty right though old age.  This is why the “cup” was invented – we do anything and everything to protect our penises and groin region…call it instinctual…call it survival of the fittest.  At the risk of over blowing this (which I probably have, so I will continue), it is inherent in every man to protect and defend his penis from unwanted and unwelcomed intruders at all costs…as Lady Gaga says in her song – “we were born this way!”

Fast forward to this past Thursday, July 21^st …The 21^st just so happens to be the day before my birthday, and this was the day my stent removal procedure was to be preformed.  Early or not, I could think of a thousand better ideas for a birthday present.

I arrive in the Urology Department of the hospital, and the usual happens – vital signs are taken and then I am asked have a seat while they “prepare” the room the procedure will be done in.  By the way, my blood pressure was a little elevated that morning – I WONDER WHY?!

As I enter the procedure room, the nurse instructs me to remove everything below the waist and put a johnny on.  I did as I was told, and then she had me lie back on the table, at which point she lifted my johnny and placed a sheet over my groin with hole in the middle of it for my penis to pop through.  Then she covered me up with a “modesty sheet” until the doctor was ready.

The nurse continues to prepare for the procedure and before I know it the urologist has come into the room.  After some niceties, he told me this would be quick…and then suddenly, when I wasn’t looking, he stuck what felt like a probe up through the middle of my penis and said, “you should feel a little pressure.”  In my head I was saying back to him, “No shit, Sherlock!”

“There”, he said….”Oh, it’s done”, I’m thinking”…”That should make this a little more comfortable”, he continued.  Then he picked up this loonnng flexible instrument and said, “Ready?...here we go.”  This flexible tubing had a camera attached to it that he could direct the tube through my urethra and into my bladder, and at the end of the tube was what I would call a “grabber” that would take hold of the stent and remove it.

“Ok, a little pressure now”, he continued.  I held my breath, and then suddenly he says “Ok, good, I got it, you’re all done…go ahead and get dressed and you’re free to go home.”

Wow, that was it?!  I have been worried sick over the last six weeks about this appointment, and now it was over – finally, thankfully. 

In retrospect, it was a relatively simple procedure…so simple, if fact, that I questioned yourself as to why I worried so much…but then again, when you are protecting and defending one of your most sensitive areas, it is only natural to have that kind of anxiety.

At least that is what I keep telling myself anyway!!!

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

July 18, 2011

After going through what I went through six weeks ago, as many of you have before me, even a simple follow-up trip to the doctor can be a little nerve-wracking.

Why?  Because if you are like me, and I am assuming many have had similar experiences over the course of your lives, you have spent a great deal of time in and out of doctors offices from anything from a simple cold/flu to something like preparing for surgery.  A trip to the doctor for us is far from simple any more.  Even the most positive minded of us get a little bit of apprehension when we have to hear the results of lab work or an x-ray or CT Scan, or what have you.

So, although I have been feeling fine…check that…feeling Great since the transplant, there is always that little bit of doubt that creeps into my consciousness…and this appointment was no different.  I guess what was fueling my apprehension was the fact that I can see the results of my labs online several hours after they are drawn.  I would go so far as to say that I am a bit obsessed when it comes to wanting to know my labs, especially my creatinine (which incidentally has remained around 1.0, and my last result from this past Friday was 0.9 – these are very good numbers).

I will admit that I don’t know what all of the lab values mean or translate to, which can be very dangerous to ones psyche.  Some of the other numbers that I follow closely are potassium and sodium levels, as well as my hemoglobin and hematocrit levels.  All of these levels effect both the heart and kidney function.  However, a low hemoglobin level usually is an indication of anemia.  With hematocrit, it is specifically a measure of how much of the blood is made of red cells. The hematocrit is a very convenient way to determine whether the red blood cell count is too high, too low, or normal. The hematocrit is a measure of the proportion of blood that is composed of the red blood cells. (WebMD).

Both of these numbers dropped like a rock just after the transplant, which, apparently is not uncommon.  This could have also explained why I was feeling some angina several days after the surgery.  And looking at my lab values over the course of the last six weeks, both of these levels have been gradually rising.  But what I wasn’t seeing go up was the levels of my White Blood Cell count and my Red Blood Cell count.

When I met with Dr. Pavlakis on Friday, I asked her if she was concerned with any of my blood levels.  I tried to be as nonchalant about it as I could, without letting on that I was concerned about it.  Fat chance…she could see that it was worrying me a little.  But with a wide smile, she said that she was actually happy with where my numbers are, especially only being six weeks out from surgery.  She went on to explain that two of the medications I am on are actually suppressing my white blood cells – the Cellcept and the Bactrim – she said that the white blood cell level may never return to “normal” because of the work the Cellcept and the Bactrim are doing..  As for the red blood cells, she said my new kidney is working fine but it takes a while for the production of Erythropoietin to really kick in.  Erythropoietin is a hormone produced by the kidney that promotes the formation of red blood cells by the bone marrow.  When this not happening properly, kidney patients know this very well, the erythropoietin is replaced by an injectable, man-made drug called Procrit (generic = epoetin alfa).

All in all, I guess this was a case of worrying about something that I didn’t have to really worry about…if Dr. Pavlakis is happy, then I am happy as well.  As far as the remainder of the appointment went, it went like clockwork – I have hit all of the benchmarks that they have put out for me so far, which means I was just cleared for exercise (although nothing to do with my abdomen for another month or so)…off to the treadmill!  And by the way, a very happy birthday to my cousin Karen, who turns _?_ tomorrow (I don't think she wants me telling her age any longer!).

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

July 5, 2011

Thirty days…four weeks…one month…that is how long it has been since I received Tommy’s kidney – one month today.

Wow, that month went by really quick, and for the most part with virtually no issues to speak of – except for one very annoying one…that feeling like I have a UTI brewing.  Well, as it turns out, it may be nothing more than the stent that was put in irritating my bladder.  In fact, I just got off the phone with the transplant coordinator because I had an awful weekend.

Over the course of the last few weeks, if I had experienced these UTI-like symptoms, it would last no more than a day.  This past weekend was a little different…Saturday was hell on earth – pain when urinating, burning, going frequently (or thinking I had to go), and then just producing little dribbles of pee – very frustrating.  While all of this was happening, I was feeling a pain by the incision site, and in my mind I immediately went to: “Oh shit, I have a hernia.”  And this pain actually seemed to be getting worse by the day as soon as I had the staples removed, which was last Tuesday.  And thank God they came out when they did, because I was ready to pull them out myself – I just wanted them out…and it felt so good once they were out.

Sunday was not much different, only this time I was seeing some blood in my pee.  Believe it or not, I didn’t get too freaked out about the blood because I was told by one of my nurses before I left the hospital that I may see some blood and that is typically normal during the first eight weeks after the transplant.  She also said that even a drop or two of blood can make the pee look a lot worse than it actually is.

Monday comes and during the first part of the day, I am again having many of the same symptom, but towards the afternoon they start to subside a bit…all except for the pain by my incision site.  So, then I decided to leave my transplant coordinator a message detailing my weekend.

When she calls me back this morning, she explained to me that what I am most likely experiencing is a severe irritation of the stent on my bladder…continuing she says, “it doesn’t happen often, but it can happen.”  She then said that since I just hit the four week mark, my surgeon may elect to have the stent removed earlier then what it is now scheduled for (the 21^st). 

Thankfully, I have a scheduled appointment with the surgeon this Thursday – here’s hoping he will confirm that this is not a hernia, but in fact the stent, and I will be able to go on and live a pain-free life as soon this thing can be taken out!

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