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Kingston, Massachusetts, United States

Monday, February 28, 2011

February 28, 2011

Last time I looked at the causes of kidney disease, and to be honest, I never knew there were that many causes…and I probably only scratched the surface, which is why I say it is important to check with your own doctor if you suspect anything.

Recently, a very dear friend wasn’t feeling very well.  She had a typical cold that turned into a flu.  Obviously a flu can be troublesome, especially if it lingers.  But for most people, you just have to let it “run its course” as many doctors and moms have said over the years.  However, what really worried me about her flu, was about a week into it she began to experience excruciating pain in her side by where her kidney was located.  After she told me about this, I was really worried.  She went to see her doctor, who ordered a CT scan, thinking that it may be a kidney infection.  Thankfully, the results of the scan were negative…however her pain persisted, but with no real answer as to why.

Kidney disease is something that I would not want even for my own worst enemy.  So, to see a family member or friend experience kidney issues, even temporary, is painful to watch.  So, I feel it is only fitting this time now to look at symptoms of kidney disease so you know what you are looking for, or want to discuss with your physician.  Growing up, I always knew that my Diabetes could possibly lead to kidney issues, if not fully diagnosed kidney disease.  But the only symptom that I was ever aware of was high blood pressure.
As you know, high blood pressure can lead to so many different health issues, especially cardiac issues and renal issues.  The way I understand it, it is a very vicious cycle of how high blood pressure affects your kidneys.  High blood pressure makes the heart work harder and that, over time, can damage blood vessels throughout the body. If the blood vessels in the kidneys are damaged, they could stop removing wastes and extra fluid from the body. With the extra fluid in the blood vessels, this could then raise blood pressure even more.

Some of the other symptoms, I have learned, unfortunately through direct experience, are: changes in urination, swelling, fatigue, dry skin/itching, metallic taste in your mouth or ammonia-like breath, nausea/vomiting, shortness of breath, feeling cold, dizziness or trouble concentrating, leg/flank pain.
There may be other symptoms, but these seem to be the most prevalent, and in my case, as I mentioned, I have unfortunately experienced most of them.

Changes in urination.  Often times, most of us don’t notice anything about our pee.  As men, we go to the bathroom, stand in front of a urinal and relieve ourselves…women do the same, except they sit when they relieve themselves.  We do this day in and day out, usually without much thought, unless there is some pain or discomfort or of there is an odd odor coming from it.  Some things to look for when kidney disease may be suspected include foamy or bubbly urine (I have come to find out that this could mean that there is the presence of protein in your urine); you may be peeing more often and it could be pale in color or you could be peeing less often and it could be darker in color; and you may feel pressure or have difficulty urinating.  For me it has mostly been foamy urine.

Swelling.  When your kidneys fail, they don’t remove waste and toxins from the blood like they did when they were healthy…this can lead to edema, or swelling.  It mostly occurs in the legs, ankles, feet, face or hands.  For me, there have been times that my ankles have blown up like tree trunks, to the point where it was extremely difficult to put on shoes.
Fatigue.  According to lifeoptions.org, healthy kidneys make a hormone called erythropoietin (a-rith'-ro-po'-uh-tin) that tells your body to make oxygen-carrying red blood cells. As the kidneys fail, they make less erythropoietin. With fewer red blood cells to carry oxygen, your muscles and brain become tired very quickly. This condition is called anemia, and it can be treated.  Anemia is something that can definitely kick your butt.  You may have all the greatest intentions in the world to do a planned activity, but when you are anemic it is as if your body is moving in slow motion and you just don’t have the energy to catch up.  My anemia has been treated several ways…with erythropoietin replacement injections (Procrit) and iron supplements.
Dry Skin/Itching.  Since the kidneys remove wastes and toxins from the bloodstream, when they fail the buildup of waste in the blood can cause itching and dry skin.  In my case, I have had very dry skin for as long as I can remember.  Sometimes I feel like I could put a whole bottle of moisturizer on today, and then by tomorrow I would need another new bottle…it is very annoying to say the least.
Metallic Taste/Ammonia-like Breath.  Again, according to lifeoptions.org, a buildup of wastes in the blood (called uremia) can make food taste different and cause bad breath. You may also notice that you stop liking to eat meat, or that you are losing weight because you just don't feel like eating.  Thankfully, this is not something that I have experienced, and hope that I don’t.
Nausea/Vomiting. Uremia, as mentioned above can also cause nausea and vomiting.  Again, this is something that I have not yet experienced and not looking forward to doing so.
Shortness of Breath.  Lifeoptions.org has a good explanation for this, saying, Trouble catching your breath can be related to the kidneys in two ways. First, extra fluid in the body can build up in the lungs. And second, anemia (a shortage of oxygen-carrying red blood cells) can leave your body oxygen-starved and short of breath.  For me, shortness of breath actually was a symptom of my underlying heart disease.  But in some respect, the anemia could have played a part in it as well.  Either way, if you are experiencing this symptom, go get it checked out immediately.
Feeling Cold.  For me, this possible could be the worst symptom to deal with.  Being in New England, it can get pretty cold here.  But during the Spring and into the Summer and early Fall, it can be very pleasant and comfortable.  However, with anemia I could be in the in the warmest room, or it could be a 100 degree day outside, and there are times that I would still feel cold.  The annoying part of this symptom, is the helpless feeling that you just feel cold a lot of the time.
Dizziness/Trouble Concentrating.  Kidney issues related to anemia often mean that your brain is not getting enough oxygen rich blood to operate functionally.  Hopefully you won’t see this in the final draft, but in writing this entry I have had more than a few spelling mistakes and started and stopped and started writing again.
Leg/Flank Pain.  I have not experienced this, except for the occasional “side-splitting” laughter that comes from watching comedian Robin Williams.  However, apparently, though, this could be considered a symptom of those experiencing Polycystic kidney disease, which causes large, fluid-filled cysts on the kidneys and sometimes the liver, and can cause pain.
I may be sounding like a broken record, but if you are experiencing any of these symptoms, do yourself a favor and get it checked out sooner rather than later.

Tuesday, February 22, 2011

February 22, 2011

As I have been writing, I have been hearing from others around the world about how kidney disease has affected them or their family members.  I have to be honest, I think I have been ignorant, or at the very least na├»ve, about the many causes of kidney disease.

As you know, my kidney disease and the need for a transplant is a direct result of having Diabetes for so many years, coupled with high blood pressure. I learned recently that your kidneys can become damaged from Tuberculosis (TB) and Lupus.  The shear number of people with kidney disease is staggering...add to that the number of those with kidney disease that require, or will require, a transplant and the numbers just mind boggling.

So it got me to thinking about how else your kidneys can be damaged, leading to kidney disease, and ultimately the possibility of needing a kidney transplant.  So, I went about searching and found some interesting information…now what am about to share with you is not gospel, I am not a doctor, but if you have any of these conditions, do yourself a favor and get it checked out.  The list I have here is also probably incomplete.  The best advice I could give you, is get a full physical from your doctor…that way they can look at a whole host of things from kidney disease, to heart disease, to Diabetes, etc.
According to the National Kidney Foundation’s website, other conditions that affect the kidneys are:
·         Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney's filtering units. These disorders are the third most common type of kidney disease.
·         Inherited diseases, such as polycystic kidney disease, which causes large cysts to form in the kidneys and damage the surrounding tissue.
·         Malformations that occur as a baby develops in its mother's womb. For example, a narrowing may occur that prevents normal outflow of urine and causes urine to flow back up to the kidney. This causes infections and may damage the kidneys.
·         Lupus and other diseases that affect the body's immune system.
·         Obstructions caused by problems like kidney stones, tumors or an enlarged prostate gland in men.
·         Repeated urinary infections.
And this from Medicinenet.com:
Kidney failure can occur from an acute situation or from chronic problems.
In acute renal failure, kidney function is lost rapidly and can occur from a variety of insults to the body. The list of causes is often categorized based on where the injury has occurred.
Prerenal causes (pre=before + renal=kidney) causes are due to decreased blood supply to the kidney. Examples of prerenal causes of kidney failure are:
  • hypovolemia (low blood volume) due to blood loss;
  • dehydration from loss of body fluid (for example, vomiting, diarrhea, sweating, fever);
  • poor intake of fluids;
  • medication, for example, diuretics ("water pills") may cause excessive water loss; and
  • abnormal blood flow to and from the kidney due to obstruction of the renal artery or vein.
Renal causes of kidney failure (damage directly to the kidney itself) include:
  • Sepsis: The body's immune system is overwhelmed from infection and causes inflammation and shutdown of the kidneys. This usually does not occur with urinary tract infections.
  • Medications: Some medications are toxic to the kidney, including nonsteroidal anti-inflammatory drugs like ibuprofen and naproxen. Others potentially toxic medications include antibiotics like aminoglycosides [gentamicin (Garamycin), tobramycin], lithium (Eskalith, Lithobid), iodine-containing medications such as those injected for radiology dye studies.
  • Rhabdomyolysis: This is a situation in which there is significant muscle breakdown in the body, and the damaged muscle fibers clog the filtering system of the kidneys. this can occur because of trauma, crush injuries, and burns. Some medications used to treat high cholesterol can cause rhabdomyolysis.
  • Multiple myeloma
  • Acute glomerulonephritis or inflammation of the glomeruli, the filtering system of the kidneys. Many diseases can cause this inflammation including systemic lupus erythematosus, Wegener's granulomatosis, and Goodpasture syndrome.
Post renal causes of kidney failure (post=after + renal= kidney) are due to factors that affect outflow of the urine:
  • Obstruction of the bladder or the ureters can cause back pressure because the kidneys continue to produce urine, but the obstruction acts like a dam, and urine backs up into the kidneys. When the pressure increases high enough, the kidneys are damaged and shut down.
  • Prostatic hypertrophy or prostate cancer may block the urethra and prevents the bladder from emptying.
  • Tumors in the abdomen that surround and obstruct the ureters.
  • Kidney stones. Usually, kidney stones affect only one kidney and do not cause kidney failure. However, if there is only one kidney present, a kidney stone may cause the lone kidney to fail.
Chronic renal failure develops over months and years. The most common causes of chronic renal failure are related to:
  • poorly controlled diabetes,
  • poorly controlled high blood pressure, and
  • chronic glomerulonephritis.
Less common causes of chronic renal failure include:
  • polycystic kidney disease,
  • reflux nephropathy,
  • kidney stones, and
  • prostate disease.
As you can see, there are a lot of different factors that can lead to kidney disease.  It would certainly be wise to schedule an appointment with your doctor sooner rather than later.  If any treatment is needed, it could, perhaps, slow the progression of your kidneys failing, and thus putting off a possible need for transplantation.

Saturday, February 19, 2011

February 19, 2011

Dilemma…also known as, a quandary, a tight spot, a catch-22, a predicament, an impasse, or simply a problem…do I choose chocolate ice cream or vanilla ice cream.  However, my dilemma is not so simple.

During my last appointment with Dr. Pavlakis, we discussed me being listed on the UNOS list for a pancreas as well as a kidney.  Ultimately, after much discussion, I went with her recommendation to be listed for both. 

One might think that this would be an easy decision to make, especially after having to rely on either insulin injections or messing with an insulin pump for the last 27 years.  I would finally be free of the daily grind of thinking my body was a big, constant chemistry experiment every day, every hour, trying to balance my blood sugar levels - think of it as a seesaw and on one end you have insulin, the hormone produced by the pancreas, and on the other end is all of your carbohydrates and other foods, and you have to try to keep your blood sugars in a normal range (think of the seesaw being level, maybe swaying just a little up and down).

That daily, or hourly, chemistry experiment, keeping the seesaw level, is hard work.  So, given all of that, wouldn’t it be a no-brainer, then, to opt for having a pancreas transplant in addition to the kidney transplant?  The quick answer is yes…absolutely, I would give up having to regulate my blood sugar, and all the worry that goes along with it, in a heartbeat!  But only if I knew that it would truly mean an end to my Diabetes.

Diabetes sucks, plain and simple.  It took the life of my sister, Linda – she was only 24…24!  She was a nurse, and her whole life ahead of her.  Diabetes is the sole reason why I am here today in need of a kidney to live.  It has toyed with my eye sight, to the point of needing laser surgery to repair my retinas.  It has messed with my heart, requiring me to have several stents placed and eventually leading to double by-pass heart surgery.  It has taken away the sensation, or feeling, in parts of my feet – nearly losing one of my big toes because an ulcer was slow to heal (due to having a great foot doctor, I still have all ten toes, but my balance is a little off).

So, if I have a pancreas transplant, there is no guarantee that I would be Diabetes-free for many years to come.  The success rate is about 90% (meaning no need for insulin injections) after one year, and 70 – 75% after five years.  I know I am asking for a miracle, but part of me feels that if I am all in on a pancreas, I don’t want to ever have to go back to the way it was.  I know that is being selfish, and there are those that would say, “hey, at least you had a few years where you didn’t have to take shots every day or adjust your pump.” 

And you know what, they would be right, at least I had that.  It would be bitter-sweet if I had to return back to the life of insulin and worrying about my blood sugar.  I would do it, of course, but it would be bitter-sweet…I would hate it, but I would do it.

There are other things to consider as well.  If this were to happen before Tommy is scheduled to donate a kidney to me (it would have to be a perfect match), that would mean that someone else would have to have died in order for me to live – I still have trouble wrapping my head around that.  Plus, the wait on the list is longer when you are looking for a kidney and pancreas together.

There is also the option of receiving a kidney from Tommy, and then a pancreas becoming available later from a cadaveric donor, and I would have the option of saying yes I will take it, or pass on it.  It is my understanding that if I pass on it, I will still remain on the list and I could be called again to make a similar decision.

If only life were as easy as choosing between chocolate or vanilla ice cream…

Thursday, February 17, 2011

February 17, 2011

Who knew?  The other day I had the pleasure, and when I say pleasure I mean pleasure, of a reflexology appointment.  As a Valentine’s Day present, Christine got me a session of reflexology.  Like most, I have had massages in the past, but this one was a little different, it focused on my feet, ankles and calves.  The theory behind reflexology, as I understand it, is that there are certain points, pressure points, on the bottom of your feet that correspond to various parts of your body.
As I arrived for my appointment, I was greeted by Justine, the muscular therapist.  Justine brought me into a small, dimly lit room and soft music playing in the background.  As we entered the room, Justine began to explain to me everything that she was going to do with my feet, and again reaffirmed what I mentioned earlier about reflexology and the pressure points on the feet that correspond with the various parts of the body.
Justine went on to say that if she touches a point on my foot and it produces a little bit of pain, that could mean there is an issue with that particular organ.  (Prior to my appointment I had looked at a map of the foot from a Reflexologists point of view and had seen where the pressure points were for the kidneys)  As I was a little skeptical of this claim, I made no mention of my kidney disease to Justine to see if I really would feel a little pain or discomfort in the kidney area of the feet.
Justine had me lie on the massage table, which, as it turns out, was heated and very relaxing.  Justine then began the massage, and it was absolutely fantastic.  Then came the reflexology part of the appointment.  And sure enough, when she hit the kidney area of my foot, I felt some discomfort.  Who knew?
Being a little skeptical by nature, when I got home from the appointment, I looked up reflexology and its benefits on kidney disease, and it turns out there is a connection – a somewhat loose connection, but a connection none the less; with the theory being foot reflexology increases blood flow to the kidneys. This stimulates the kidneys to work more effectively.

According to the website renewyou.ca/reflexology/benefits:

Conditions treated are:  Bladder infections, urinary incontinence and kidney problems.
Reflexology relieves these conditions by stimulating the whole pelvic cavity which in turn improves the nerve and blood supply to the urinary system.  When toxins are eliminated and tension is broken down, the healing process begins.  With the stress taken off of the kidneys, blood pressure is lowered.

Whether or not there is an actual connection to reflexology and benefiting kidney disease, I guess will remain up for debate.  There are those that feel there is a definite connection.  And there are those that are skeptical.
I have to say that I am probably in the latter group, but leaning towards believing there is a benefit.  I would be willing to subject my feet to the “rigors” of any study looking to see if there are true benefits that come from reflexology – hey, if it will help my kidney function, count me in!

Monday, February 14, 2011

February 14, 2011

Given that today is Valentine’s Day, I find it only fitting to talk about the heart.  After all, both the kidneys and heart work very closely together in keeping us alive.
If there is one thing that I have heard from transplant patients that aids in the recovery process after the surgery, is preparing for the surgery with exercise.  And having the fortune of being a heart patient, as well as kidney patient (note the sarcasm), I can speak from relative experience.
One thing I learned while going through cardiac rehab, was that everyone – big, little, tall or small – benefits from exercise.  The optimum amount of aerobic exercise that most physicians want you to shoot for is 30 minutes, at least three times a week.  Some benefits of aerobic exercise include:

· Weight control
· It lowers your resting heart rate… reducing the work load of the heart
· It lowers you blood pressure... minimizing the risk of kidney failure
· Reduces cholesterol
· Improves immune system functioning
· Increases insulin sensitivity to help prevent type II diabetes, an underlying cause of kidney failure.
· It improves cardiovascular disease conditions

Most people think aerobic exercise means running or jogging.  A lot of people don’t like to run or jog, and therefore don’t exercise (or don’t do much).  In fact, you don’t have to run.  As long as you are getting your heart rate up to an appropriate level then you should be fine.  An appropriate level is something individual and should be discussed with your physician.

Well, what are you going to do, if you are not running?  Walk.  Some experts will argue that you get just as much benefit from walking as you do from running…some would even argue that walking is better because it does not have as great of an impact on your joints.  What else can you so…anything you find enjoyable that will get your heart rate into an appropriate range – cycling, rowing (you can use the machine at the gym), swimming, ice skating, cross country skiing, aerobics class.

But exercise isn’t just for your heart…It wasn’t until I started really looking at kidney disease, that I became aware that that there is a huge connection between kidney disease and exercise.  Comprehensive-kidneyfacts.com has a really simple and understandable analogy:

                        What is the connection between exercise and kidney disease? Just imagine for a moment a pound fill with water that remains stagnant for a long period of time. After a while the water becomes discolored, as moss and other pollutants accumulate in it. Contrast that with a fountain that is constantly spouting and moving the water around. It looks a lot cleaner, healthier, and alive. There is less build-up of moss and other pollutants.

This analogy gives a good idea of what happens in the body when we fail to exercise compared to when we exercise regularly. As the blood and other substances are stirred by exercise, toxins and other waste products are eliminated more efficiently and circulation and other metabolic functions improve. This allows oxygen and essential nutrients to be transported more efficiently around the body, resulting in better overall health.

I also incorporate some strength training into my workouts, as well.  If you have never done strength training, do so under the guidance of the trainer at the gym you belong to.  They can show you the proper techniques so that you reduce the risk of injury to yourself.  You don’t need to spend a lot of time with a trainer (unless you want to), one or two sessions should be fine to get you started.

Now, I don’t want to come across as someone who is in top physical condition because I exercise, because I’m not.  It’s a lot of work…I don’t necessarily like to do it every day, or every other day for that matter, but I force myself to do it because I know it is helping me.

Growing up I played soccer (known to many around the world as football).  I loved playing in the actual games, but I hated practice.  I forced myself (actually my coaches forced me) to go through the practices and the training sessions because it could help make me a better player in the end (although I was never very adept at dribbling, so I ended up playing the defensive positions most of the time – that’s ok, though, I had a blast back there).

I try to use the same mentality now.  The time I spend exercising today, and in the days leading up to the transplant, I see as my practice time.  Ultimately I feel (and many who have gone through this have said just as much) that it will benefit me in my recovery from the surgery, which I see as the game, and hopefully shorten my recovery period.

Happy Valentine’s Day!

Saturday, February 12, 2011

February 12, 2011

As much as the transplant scares me, and it absolutely terrifies me, the one thing that has gotten me through it to this point is having a great support system.
I don’t want to even imagine what life would be like without the great support that I have had.  I would be a basket case…well, more so than I am now.  I know that I am fortunate, as I know not everyone has what I have.

It all starts with your family and friends.  I am the type of person that has typically been the one helping others in the past – I like doing that.  But things are a little different now.  Now I need to ask for help or accept help of others when it is provided.  That has been extraordinarily difficult for me.  As I said, I am fortunate, in that my family has always been spectacular when “the chips are down.”

Mom, Tommy and Christine, well you could not ask for a better core, and I know Dad and Linda are always here in spirit (and, of course, I could not forget Bella, my beagle).  And our family support just extends from there.  I have the most extraordinary extended family of aunts, uncles and cousins, no matter where they are around the world, they always seem to be right there when you need them most – if not physically, by phone or email for sure.

I have also been lucky enough to always surround myself with great friends.  You don’t have to have many of them, but those you do have need to be able to understand what you are going through.  They will not judge you, but they will support you – help you take your mind off things for even a little while…by going out for a beer or dinner or whatever.

But a good support system goes far beyond just family and friends.  It also extends to the doctors and nurses that take care of you from the time you are told you need a transplant, right up to your surgery and well beyond.   It also extends to those you meet along the way who have either gone through it or are in the process of going through what you are going through…such as Dina and Becky, as well as all of the other who have been following this blog.

This has been a long road so far, and I know it’s going to be even longer and I am going to need all the help I can get to live a long and fulfilling life.  The key, for me, anyway, will be when someone offers to help, no matter how great or how small, to take it – at least until I am stronger and won’t need as much help (or my Irish stubbornness kicks in).

For those reading, think of who your core is and then build out from there…you definitely need some type of support system in place as you go through this journey…this is something that you should not even consider going at alone.

You can also go to www.thewaitinglist.org for more information on organ donation, or visit The Waiting List on Facebook at: http://www.facebook.com/endthewaitinglist .

Thursday, February 10, 2011

February 10, 2011

What scares me about the transplant?  Wow, what a loaded question.  Growing up not much scared me.  I was extremely shy, though I was not very timid.  That sounds like an oxymoron, but its true…I guess you could say that I was more of a quiet kid.  My uncle had his own carpentry business, and I would think nothing of it and climb up on the roof of a house and help him.  I think Uncle Jimmy was more scared of me being up there than I was of being there.  Tower of Terror at Walt Disney World – Loved It!  (Though, I will admit that I am not much of a roller coaster fan).
As a kid, I think what probably scared me the most would be running after the ice cream truck in the neighborhood, finally catching up to it and not having enough money to for your favorite snow cone (you know the one, the one with the “surprise” gumball at the bottom) and having to settle for a plain ice cream sandwich.  Now, ice cream sandwiches are ok, but when you have your heart set on something else, plus its 95 degrees out and in the 3.2 seconds it takes you to get the ice cream sandwich from the ice cream man and unwrap it, it has already melted and is now running down your arm.

It would be nice to be standing in front of that ice cream truck right now, but I’m not.  I’m standing in front of a kidney transplant…..and it scares the hell out of me!!!

So, what is it that scares me about this whole transplant thing…probably a lot more than I have let on to my family and friends.

First and foremost, I am scared because, in order to continue living, I need to depend on someone else to physically give up a part of themselves.  This is not like borrowing their lawn mower  to mow your lawn and then forgetting to give it back…the significance of this carries a teeny-tiny more weight.

I am scared about a major “what if”?  What if it doesn’t work?  What if Tommy’s kidney suddenly stops working for me, and I reject the kidney…now I am probably headed to dialysis and Tommy is only left with one functioning kidney.

I’m scared that, after all the testing that Tommy has gone through, that the transplant committee will take him out of consideration and then we are back to needing to find a donor again.

I am scared to die.  I know this surgery is much more common nowadays, but there is that little spec of doubt there.

I am scared of all the meds that I will have to take after the transplant.  I wish it was as easy as taking a Tylenol and being done with it.  It seems like it will be fistfuls of immunosuppressants several times a day.

I am scared about the side effects of the immunosuppressants.  Some lead to Diabetes in some people (I already have that covered, though); some to skin cancers and other skin legions ; and some can even lead to lymphoma and leukemia or other cancers (thyroid) or tumors.  Then there are the general side-effect s – tremors in your hands, hair loss or thinning, general shakiness and the good ‘ole nausea and vomiting.

I’m scared for my family and friends waiting and watching me recover from the surgery.  I’m even scared for my beagle, Bella.  Bella gets very nervous if I am out of the house for more than a few hours.  So you can imagine how she will be when I am in the hospital, there won’t be enough cookies in the world to satisfy her.

For those that are reading this and have gone through it, or are going through it, I would love to know what scares you about this whole process…what scares you and how do you handle it?

You can also go to www.thewaitinglist.org for more information on organ donation, or visit The Waiting List on Facebook at: http://www.facebook.com/endthewaitinglist .

Tuesday, February 8, 2011

February 8, 2011

By all indications, one of the necessary evils of dealing with any disease is the constant and consistent need for blood work.  To break it down to the simplest terms, blood work is often what is used to confirm or refute an initial diagnosis.  If the diagnosis is confirmed, then this will, inevitably, lead to many, many more needle sticks.  Of course, if the diagnosis is incorrect, then either more blood work is done to test for something else or the doctor is happy saying you don’t have such and such disease, and you are even happier because your arms, and the veins in your arms, will be spared from incessant poking and prodding.

Obviously, this was not the case with me 27 years ago when I was diagnosed with Diabetes.  Over the years, especially when I had been living with Diabetes for quite a while, additional blood tests were performed that began looking at my kidney function.

Those familiar with this blood work manifest know all too well that there is a whole slew of lab tests that can be run and are run quite frequently.  However, I am just going to concentrate on a few…creatinine, BUN, microalbumin and eGFR.

First off, creatinine…The blood creatinine level shows how well your kidneys are working. A high creatinine level may mean your kidneys are not working properly. The amount of creatinine in the blood depends partly on the amount of muscle tissue you have; men generally have higher creatinine levels than women.  For most people, the normal kidney function range is between 0.7 and 1.3 MG/DL (there may be a slight difference depending on the standards that your lab, clinic or hospital uses, which goes for more lab work).  For me, just about three years ago, my baseline was 1.7, which is just out of the normal range.  Over the last several years, this number has been steadily increasing into the 2’s and then into the 3’s.  Dr. Hoenig, whom you were introduced to in an earlier blog, once told me that once I was into the 4’s, then it would be time to be referred to the transplant team.  Early in 2010, I hit 4.2, and then went as high as 4.3.  It has come back down since, but, as much as I would hope, that doesn’t necessarily mean my kidneys are going to miraculously return to normal function.  Blood work this past Friday shows that my creatinine level is at 3.8.

A blood urea nitrogen (BUN) test measures the amount of nitrogen in your blood that comes from the waste product urea. Urea is made when protein is broken down in your body. Urea is made in the liver and passed out of your body in the urine.  A BUN test is done to see how well your kidneys are working. If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level.  A low BUN level can occur normally in the second or third trimester of pregnancy.  The normal range is about 8.9 to 20.6 MG/DL.  My BUN level has been close to 200 at one point.  With my most recent labs it is at 41.0 – still high.

A microalbumin test checks urine for the presence of a protein called albumin.  Albumin is normally found in the blood and filtered by the kidneys.  When the kidneys are working properly, albumin is not present in the urine. But when the kidneys are damaged, small amounts of albumin leak into the urine. This condition is called microalbuminuria.  Microalbuminuria is most often caused by kidney damage from Diabetes.  If early kidney damage is not treated, larger amounts of albumin and protein may leak into the urine. This condition is called macroalbuminuria or proteinuria.  When the kidneys spill protein, it can mean serious kidney damage is present. This can lead to chronic kidney disease.  The normal lab range is 0.0 to 29.0 UG/ML.  My lab result was 1064.0.

The eGFR (estimated Glomerular Filtration Rate) is a number based on your blood test for creatinine.  It tells how well your kidneys are working.  Essentially, as I understand it, it helps the doctor determine at what percent your kidneys are functioning.  With these most recent lab results, I am unchanged at 17%.  Dr. Hoenig has told me that dialysis typically begins when you hit 10% kidney function.  However, everyone is different and every case is different, so certain doctors may have differing philosophies of when to begin dialysis.

My thanks to the South Shore Medical Center website for helping to explain these tests.  I hope I made it easy to understand for you.

Our hope is, provided Tommy gets the final clearance, is to do the transplant before I get to 10% function…it can be a short distance between 17% and 10%...

Sunday, February 6, 2011

February 6, 2011

That today is Super Bowl Sunday, I feel it is only fitting to talk a little sports, but not so much about the Super Bowl (although my preference, being a New England Patriots fan, would be for Green Bay to win, thus not allowing Ben Rothlesberger to close the gap on the number of Super Bowl trophies he and Tom Brady would have.)

No the sport I want to take a little time talking about is running. Why running? For a very special reason for me...Tommy is running the Boston Marathon this year. This will be his third consecutive year doing so, and the first for the Joslin Diabetes Clinic in Boston. The previous two years, Tommy ran the Marathon for the Dana Farber Cancer Institute in Boston in honor of our mother, Bridget, who has battled (and is winning) with lung cancer.

Aside from the last couple of Boston Marathons, Tommy was never really considered a runner, per se. Although, he would run to keep in shape. Tommy's passions, however, growing up were more in line with baseball and football. That's not to say that when we were younger, we would make a make-shift goal in the backyard and I would put him in goal and I would try to drill soccer balls past him...we also tried playing tennis once or twice, but Tommy, at times, had a little difficulty keeping the ball in our court (often hitting it with his racquet over the fence like he was hitting a home run in baseball). Needless to say, Tommy stuck to what he was really good at - baseball and football.

He was then inspired, by mom, a couple of years ago to begin training for the marathon, and teamed up with Team Bruschi and ran to raise money for cancer. Now he is running for Team Joslin to raise money for Joslin's High Hopes Fund.

Diabetes affects some 24 million Americans - including Linda, our sister who passed away from complications of Diabetes at the age of 24, Christine, my wife, and myself.

Diabetes is also the seventh leading cause of death in the United States, and is the leading cause of death by disease in Canada. People with Diabetes also have an average life expectancy 15 years less than those without Diabetes. Diabetes also contributes to many other issues, namely cardiovascular disease, blindness and kidney disease. My kidney disease is a direct result of the effect Diabetes has had on assaulting my body, which now requires me to need a kidney transplant.

On April 18th of this year, Tommy will begin his marathon run in Hopkinton, Massachusetts. Soon aver he will pass the Ashland Clock Tower, then the Framingham Train Depot...before too long the Natick town common and all of the cheering girls at Wellesley College and the halfway point...the next challenge will be Heartbreak Hill just before all of the cheering students at Boston College...then comes Coolidge Corner and then Kenmore Square, before finally crossing the finish line.

Tommy will have many proud supporters that day, including mom, Christine and myself. It's is probably hard to say who will be the proudest, but, at least to myself, I will claim dibs on that honor...it is a feat in of itself to complete a marathon, it is quite another to do to raise awareness and funds to combat a deadly disease, and it is almost beyond description the pride and honor I will have knowing that Tommy just crossed the finish line trying to help those like Linda, Christine and myself.

If you would like to consider supporting Tommy, please visit his Joslin page at: https://events.joslin.org/bostonmarathon/pfp/?ID=BT0004

Thank You

Saturday, February 5, 2011

February 5, 2011

Getting back to the point when Tommy had told me he was a 5 out of 6 match, I walked to my car as I was on my way back to my office after having been in a meeting.  I sat in the my car for what seemed like forever, just thinking to myself that this is actually going to happen…I still couldn’t believe it.

I then called Christine, and told her the good news, though, at first, it didn’t come across as such.  The more I thought about it, the more I felt like I was getting choked up.

I began by telling Christine that Tommy had just called, and then, unintentionally, I stopped as if to take a breath.  “Annnndddd?”, Christine nervously said on the other end.

“He’s a match!”, I said.  “Really?!  Oh, my God!  I am so happy for you!”, Christine finished.

I then called mom, and had nearly an identical conversation.  I just remember mom continuously saying: “Oh, my God…Oh, my God” between her tears…”I had a good feeling about this, I just can’t believe it…Oh, my God”, Mom continued.

So began the process that a potential donor under goes when they are being evaluated as an organ donor.

I wish it was as simple as a blood test, and then it’s off to scheduling the surgery if there’s a match.  But it is not as simple as that.

During this process, Tommy, has met with doctors and undergone a series of tests that are not necessarily invasive (except for maybe the colonoscopy), they are really just more time consuming.  His work-up is being done at Beth Israel Deaconess Medical Center in Boston, where the transplant will take place.  According to their website, anyone considering donation goes through the following:

·         Meeting with the transplant nurse coordinator and an evaluation with the transplant social worker or clinical psychologist
·         Complete medical history and physical examination
·         Chest X-ray to evaluate the lungs
·         Electrocardiogram (EKG or ECG) to evaluate the heart
·         Blood and urine tests
·         24-hour urine collection to assess kidney function
·         A possible glucose tolerance test if you are overweight or have a family history of diabetes
·         Spiral Computed Tomography (CT) scan to determine any abnormalities in the kidneys or the blood vessels that lead to them
·         Final cross match to check for antibodies within one week of transplant
·         Transplant surgeon consult

In addition to the above, the transplant evaluation may also include additional tests including, but not limited to, a colonoscopy, Pap smear, mammogram and/or PSA.  Anyone who has ever had a colonoscopy (myself included), you know the prep is worst part of the whole experience.

Once all of this has been completed, and the transplant team feels they have enough to make an evaluation from, the entire case will go to a transplant committee.  From my understanding, this committee is where the final approval, the “green light”, if you will, comes from of whether or not a donor will be able to move forward with donating a living organ (i.e. kidney, liver, etc.).  This committee could also delay a possible surgery if, for instance, they saw an abnormality on the CT scan and wanted it repeated in three months, or if they saw something on one of the other tests and wanted further evaluation before making a final determination.

By all indications, Tommy is at the end of his evaluation, needing to complete one (hopefully) final test.

Then…..our case goes to committee…….

Friday, February 4, 2011

February 4, 2011

Food. We all need it, but being a renal patient can present some very unique challenges. For anyone who knows me, growing up I could eat anyone under the table...I don't know if that should be a badge of honor, but it's true. I can't tell you how many times friends and family would look at me and wonder where I put it all. You see, ever since high school I have pretty much remained in the same weight range, give or take a few pounds.

I remember one night during Winter break from college, I had eaten a beautiful steak dinner at home...I was feeling pretty good, then the phone rings - it's Paul. Paul and I have literally known each other since the sand box in kindergarten at the Old Sailors Home in Duxbury. So Paul can certainly attest my stomach being a bottomless pit.

I answer the phone and Paul says to me, "we are going up to the North End (in Boston).". For anyone who knows Boston, the North End is famous for it's Italian food and restaurants...so very good! "Do you want to go?" I said that I had already eaten dinner "but, sure, I'll go."

We ended up meeting some friends at La Familia - absolutely great food! At first, I wasn't thinking about getting anything since I had already had dinner. As everyone was ordering, I felt a little pang in my stomach that I wanted something...I ended up ordering the veal pram...it was my favorite and it was amazing on this night - three pieces of very tender veal on a bed of linguine that you could feed a family of four with for about a week. Needless to say, I finished it all!

The above example aside, being a Diabetic for more than 27 years has had it's challenges in the food department. Add to that, in the last few years that I have also needed to follow a cardiac diet (heart disease is another great side effect of Diabetes), and now during the last year or so needing to follow a renal diet as well.

With three somewhat distinct diets, how in the world am I going to eat. Enter Christine, my wife. Christine is a fantastic cook, and over the years has taken it as a personal challenge to make us nutritious meals. Christine is Diabetic also, so the Diabetic diet sort of became a way of life for us. Then I there  was the cardiac diet and then finally the renal diet.

It has been a challenge that she enjoys. Who knew, because of needing to limit potassium intake, that Christine found a way of making tomato sauce without using tomatoes (hint...roasted red peppers!).  One site that certainly that has helped her, has been http://www.davita.com/, with loads of great recipes and ideas.

I know the renal diet is a pain for a lot of people...knowing that we have to be aware of things like potassium and phosphorus in the foods we eat. I would love to hear from others about how they deal with the renal diet before and after your transplant...perhaps you have a favorite recipe you may want to share...can't wait to hear from you.

Thursday, February 3, 2011

February 3, 2011 - Adendum

On a side note, Tommy is running the Boston Marathon this year for the Joslin Diabetes Clinic (I will be writing about this soon).  Please visit his web page and please consider supporting him in his marathon run this year.  All donations go towards Joslin's High Hopes Fund.  You can find his page here: https://events.joslin.org/bostonmarathon/pfp/?ID=BT0004  Thank you!

February 3, 2011

Still during this period that Tommy was waiting to find out whether or not this first round of testing would eventually allow him to continue with the whole testing process, I wrestled with whom I should tell that I was going through this. 

Up until I started writing this blog, anyone who knew me would say that I am a very private person.  But of those that I thought I should tell, were those on my staff.  I felt that was only fair because if they suddenly start noticing that I was out of the building more and more they would naturally become curious.  So, at the next staff meeting, I decided that this would be the place I would inform them.

I did not know how I was going to tell them, I really didn’t even know how I was going to tell anyone for that matter…how do you suddenly go from someone who was typically be shy and reserved to someone who may now (depending on what happened with Tommy) have to ask others for a part of them, a physical part of them, in order for me to live.  You just can’t flip a switch and change your personality, at least I can’t.  But yet, that’s what I almost felt as if I had to do.

So, on this particular Wednesday afternoon, which I remember being overcast, and really dour, we were going through our staff meeting in typical fashion.  All I remember is wanting to get through all of the agenda items as quickly as possible so I would have a few minutes at the end to tell my staff what was going on.

We had finished with the final agenda item, I took a look around the table (we had pushed two long tables together, I was sitting in the middle with about half of the staff to my left and the other half to my right) took a very deep breath and then I said to them that “over the course of the coming weeks and months I may be in and out of the office a little more than usual as”, and I took a deep another breath,  paused for another moment, and then finished the sentence I had started, “…as I need a kidney transplant.” 

There I finally had said it.  It felt…weird, but at the same time, as if a little bit of weight had been lifted off of my shoulders.

As those words slipped out of my mouth, I did not know what I was to expect in return, if anything, from my staff.  The first two staff I had been looking at, it was as if a sense of ambivalence came across them, which really made me feel good – not!  Then off to my left, I did not see it, but I heard a heartfelt gasp come from Kristena, and Jenna say something like, “Oh my God.”

Then Deb, our nurse in the program, who at times referred to herself not as a fighter, but as a healer, and this particular instance was no exception.  Seeing that some of the staff were a little upset with the news, and me who was floundering to console anyone at that point, piped up and said something to the effect that “transplants are more common and more successful nowadays, and we are all going to think positive thoughts and help Michael get through this.”  Deb could always put a positive spin on something at just the right moment.

I came to find out later that one of my staff took the news particularly hard…which was sweet and endearing to hear that they cared so much.  Being in a business that cares for people, I always tried to be as fair as I possibly could be to my staff – some undoubtedly would take advantage of that, but for others, it has helped create a foundation for a great long lasting relationship.  And when I heard how this news affected them,  it touched me deeply.