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Kingston, Massachusetts, United States

Tuesday, March 29, 2011

March 29, 2011

One year…twelve months…365 days…that’s how long it has been since I was put on the transplant  list, or the “T” List as I have come to affectionately call it (and hence the name of this blog.
March 29, 2010 – I will forever remember that day.  If I remember correctly, it was a sunny day, much like it is today, but a little warmer than it is today.  This was the day that I met Dr. Pavlakis for the first time, and she went into a little more depth about the transplant than Dr. Hoenig.  But she also said and did one more thing.  She told me that, “as of this day (March 29, 2010), you will now be listed on the national registry for a kidney, and as soon as you leave here I will go and do that.”

Just like that, with those words, I felt what every other kidney transplant patient has felt before me – Oh Shit!
As far as anniversaries go, this is not one that I woke up this morning and began jumping up and down about.  No, no, there will be no balloons or cake or ice cream or cards in the mail…there won’t even be any well wishing anniversary wishes on Facebook.  Not for this anniversary.  Not for this type of anniversary.
There are some who would find this type of anniversary as one to commemorate, and that’s fine…to each his own.  For me though, this is the type of anniversary that I will acknowledge, but there is no need to celebrate. 

How did I acknowledge this day, you ask.  Well, as (dumb) luck would have it (although some would think that this was some sort of neat coincidence and others would speculate that it was fate or cosmic forces were at work), I remembered that this was the date that I was put on the “T” List as I was sitting in the doctor’s office this morning…wait for it…waiting for Dr. Pavlakis!  Maybe I should play the lottery today!


As you know, ordinarily I would probably end my blog entry right there.  But something caught my attention over the weekend that has been bothering me and I wanted to talk about for a minute.
Although this does not have anything to do with kidney disease, per se, it does have to do with treating someone right, someone who has the cards stacked against them.
It was reported that Ina Garten, whom some of you may know from the Food Network as the Barefoot Contessa, was asked by a six year old cancer patient (Enzo), through the Make A Wish Foundation, to meet her and possibly cook with her as his request.  Initially, as it was reported, the Barefoot Contessa could not comply with the request I believe due to scheduling issues.
Ok, I can see this possibly happening once.  But this six year old requested this wish twice, with the same result.  Ms. Garten said that she was unaware of the requests.  Now this was the Make A Wish Foundation requesting on behalf of Enzo…this was not some neighborhood bake sale that was making the request…how could she not know.  She is now in spin control, and is, of course, now meeting with Enzo.
I can’t believe I am saying this, but thank you TMZ.com for bringing this to everyone’s attention.  Good Luck Enzo!

Tuesday, March 22, 2011

March 22, 2011

Getting the call.  As far as I know, there are two ways of anticipating the call that you have a donor ready to give you a kidney – the first is a call from the hospital telling you that a kidney became available due to an unfortunate circumstance, and the second is a call from the hospital telling you that they have a living donor and they want to schedule a date for the surgery.

In the first instance, unfortunately someone has to die in order for you to live.  Typically this is the case for those waiting for a heart transplant.  Although, there are instances of using a mechanical heart…but from what I understand, those instances are few and far between.

As it was explained to me by a surgeon at the hospital, when a non-living (or cadaveric) kidney becomes available, it is never planned and it could come from anywhere and not necessarily in the same city you are in.  As it was explained, the surgeon will get a call from the hospital where the cadaveric organ is and from this conversation determine if it is worth pursuing.  Meaning, if the deceased patient was, for example, in their mid-20’s and in fairly good condition as opposed to being in their 70’s and smoked all of their life.

Once the surgeon has the details on the deceased patient and the organ to be transplanted, he said that he would then call me and together we would make a determination if we wanted to accept the organ, ultimately leaving it in my hands to decide.  If the decision was to accept the organ, then the surgeon would arrange to get the organ to the hospital, and I would head to the hospital and be prepped for surgery.

Although it is still conceivable that I could get a call from the hospital for a cadaveric kidney (and possible pancreas)…it would have to be a perfect match to be considered by the surgeon.  Which leaves me to waiting for the call in the other scenario – having a possible living donor.

I just received that call.  Tommy completed his work-up a week or so ago and the case went to the transplant committee, who ultimately gave the green light for the surgery to occur.

Now that a date is being scheduled, it is all real.  Not that it wasn’t real before, but it is really real now.  I am excited and nervous at the same time.  The anxiety of whether or not Tommy would be accepted as a donor, and ultimately whether or not to have to start the whole process over again, is gone. 

With that anxiety gone, anticipation for the actual surgery has taken over.  I think I have done my due diligence in terms of educating myself about the surgery and all that goes with it (although with all of the research that you do beforehand, you are bound to miss a few things here and there.  There has been one site in particular that has been a tremendous help…and that is www.patientslikeme.com .  Here I have been able to talk to others that have gone through this already and those that are like me, waiting.  I would encourage anyone, either pre or post transplant to check out the site, it is a fantastic resource.

I would love to hear from others on the call that they received and what went through their minds when they got that call.

Also as a follow-up to the entry I did on dialysis, Cora had this to say, “Please don't forget about peritoneal dialysis. It is an excellent alternative to hemo and is much more commonly used here in Canada (invented here too). Life is much easier as you can remain in your home, often do it while you sleep, it is easier on your body (especially heart and circulatory system), and the diet is much less restrictive than that on hemo. If your doc hasn't mentioned it, ask. It's worth looking into.

Wednesday, March 16, 2011

March 16, 2011

A brief word before we get to the usual kidney stuff…this past week we saw the devastation that the earthquake and tsunami caused in Japan.  Our thoughts and prayers go out to the Japanese living through that destruction, and to all the Japanese around the world trying to contact their families in Japan.  If you would like to consider helping, please visit www.redcross.org .

Dialysis.  Just the very word conjures up the most unpleasant of thoughts.  Up until this point, I have been able to avoid dialysis, which has been a goal of mine and Dr. Hoenig – be able to get a transplant before needing dialysis. 

Even with a successful transplant, there is still the possibility of needing dialysis after the surgery if the new kidney does not start working right away.  Given that, I thought I should see what dialysis was all about.

In order to fully understand and appreciate what dialysis is, we need to go back and look at where it all started, and davita.com gives a great snapshot of dialysis’ very beginnings:
Dr. Willem Kolff is considered the father of dialysis. This young Dutch physician constructed the first dialyzer (artificial kidney) in 1943.

The road to Kolff’s creation of an artificial kidney began in the late 1930s when he was working in a small ward at the University of Groningen Hospital in the Netherlands. There, Kolff watched helplessly as a young man died slowly of kidney failure. Kolff decided to find a way to make a machine that would do the work of the kidneys. The young doctor searched the university library for information on removing toxins from blood and stumbled across an article about hemodialysis with animals published in 1913 by John Abel, a renowned pharmacologist at Johns Hopkins University. Abel’s writing inspired Kolff, and he became committed to the development of an artificial kidney.

At about the same time that Kolff began his research, World War II erupted. Once the Nazis overtook the Netherlands, Kolff was sent to work in a remote Dutch hospital.

Despite challenging conditions, the young physician pressed on. Although materials were scarce, Kolff possessed the resourceful spirit of the true inventor and improvised, using sausage skins, orange juice cans, a washing machine and other common items to make a device that could clear the blood of toxins. Amazingly, he carried on his experiment under Nazi scrutiny, risking his own life by forging documents so that he could continue his work. Kolff was able to get his wife and colleagues to help, even though it meant they too were putting themselves in danger.

In 1943, Kolff’s invention, although crude, was completed. During the course of the next two years, he treated 16 patients with acute kidney failure but had little success. All that changed in 1945, when a 67-year-old woman in uremic coma regained consciousness after 11 hours of hemodialysis with Kolff’s dialyzer. Her first words? “I’m going to divorce my husband!” Thanks to Kolff, she did in fact follow through on her plan and lived seven more years before dying of another ailment.”

Today’s dialysis treatment still involves long hours of your blood being cleaned.  The actually machine may have been updated since the 1940’s, but time spent on the machine is long – 4 to 5 hours per day three or four, up to seven days per week.

For those of you currently on dialysis, or have had experience on it, I tip my hat to you.  It cannot be pleasant. 

As for me, I am currently at 16% kidney function, more kidney function loss since last month.  So it may not be long before dialysis is a consideration for me.

Thursday, March 10, 2011

March 10, 2011 - World Kidney Day!

World Kidney Day!  Who knew there was such a thing?  Well there is, and it is a great thing at that.

Had I not had kidney disease and in need of a transplant, like most people today, I may have not taken much notice of today’s “holiday”.  In fact, like most people, I may not have even known that there was such a thing as World Kidney Day.  After all, it does not get that much play on the news or in the newspapers.  If it were not for a few different websites that I visit, I may have never known that there was such a thing as World Kidney Day.

But there is such a thing as World Kidney Day, and as I said before, it is a really good thing.  The reason why we have days, or in some instances, weeks, set aside for honoring causes or diseases, is mainly to bring awareness to those causes or diseases. 

There is even a website devoted to World Kidney Dayhttp://www.worldkidneyday.org/ .    World Kidney Day was started as a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).  And the mission of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

So, what can you do to celebrate World Kidney Day?  I’m not sure you are going to see a car dealership honor the day as they do with every other holiday.  But wouldn’t it be cool if some savvy car dealership picked up on the concept…I can see the advertisement now:

            Come on down to Any Town Chevrolet and help us celebrate World Kidney Day…Bring proof that you have kidney disease and receive 10% off a brand new Chevy Equinox or Cruze.  Bring proof that you have received a kidney transplant and get 20% off a brand new Chevy and if you have donated a kidney, then you are entitled to 30% off a brand new Chevrolet!  (For transplant recipients and donors, proof can be in the form of a scar – just show us your scar and you get the deal!)…Come on down, today only!

That would be certainly something to see.  For me, however, if anyone were to ask me that question today, I would say make an appointment with your doctor and get a check up, particularly if you have a family history of high blood pressure, Diabetes or kidney disease.  I know we are all busy, and it is annoying to have to take time out of our hectic lives to go to the doctor when we don’t feel like anything is wrong.  Trust when I say that if you can walk out of the doctor’s office and he or she says “You look great, see me in a year.”, that is well worth our impatience of sitting in the waiting room an extra 20 minutes.  Or suppose, the doctor says that they detect your blood pressure is elevated, they could start you on a medication to help you bring it under control – well worth the time to visit the doctor.

Another way you can celebrate World Kidney Day…a simple act of kindness – sign up to be an organ donor, you could save someone’s life!  Visit www.organdonor.gov

To all of the kidney patients out there…Happy World Kidney Day!  And if you know of someone with kidney disease, wish them well today and wish them a Happy World Kidney Day! (Chevy not included, unfortunately).

Saturday, March 5, 2011

March 5, 2011

One thing that I have only touched on briefly so far with regard to the transplant is the emotional toll that it takes.  Not the emotional toll on me, that is fairly evident…rather on those around me.  This whole journey has been eye opening, to say the least.

As I have mentioned before, my family has been great.  Obviously, Tommy has graciously decided to make a life decision in donating a kidney to me.  Christine and my mother have been enormously supportive (not to forget Bella, either).  And we have all had the fortitude of having great extended family and friends who have been supportive.  As strong as some people have told me I am, I honestly don’t know if I could have done this without any one of them.

But as supportive as everyone has been, I can still see that it has been draining on everyone.  Beginning with Christine…talk about a rock.  She has been solid.  From just after I got my heart by-pass surgery to the present, she has been as positive as anyone could possibly be, continuously saying, “now that your heart is fixed, you’ll get a new kidney either from Tommy or elsewhere if Tommy is not able donate, and then you’ll be as good as new and live a long, long life.”  But as each day goes by, and the possibility of the transplant grows closer, the anxiety gets ratcheted up higher and higher.  Recently, we were sitting and talking and she just said to me, “you know, I am scared too.”  I didn’t know what to say…I never wanted her to ever have to worry as much as she does.

Then there is my mother…despite having a stroke several years ago and having difficulty walking as a result, not to mention three bouts with cancer, she also has remained as positive as she can be and determined that I would get a kidney, either from Tommy or elsewhere – there was no doubt in her mind that this would happen – with her, it has always been a matter of when, not if.  Yet despite her very spry attitude, there is a deep worry that, as she tells me, only a mother could feel for a child, no matter what age they are.

Just as with Christine, I never ever wanted Mom to worry like this.  But how do you tell your wife or your mother, your aunts, your uncles, your cousins, your wife’s family, your best friend, friends and colleagues you work with, friends and neighbors you have known for years…how do you tell anyone of them not to worry when they care so much.

To tell you the truth, when you have the gift of such a great family and extended family and friends, you can’t tell them not to worry – they won’t listen.

The best you can do is tell them to buckle up because they are about to a go for a ride scarier and faster than the Aerosmith Rock ‘n’ Roller Coaster at Walt Disney World!