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Kingston, Massachusetts, United States

Thursday, July 28, 2011

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.

Saturday, July 23, 2011

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 21st …The 21st 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

Monday, July 18, 2011

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

Tuesday, July 5, 2011

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 21st). 

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