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Defeat Diabetes
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150 153rd Ave,
Suite 300

Madeira Beach, FL 33708
  
 
We are pleased to bring you a special column by Robert Brooks, who has suffered from kidney disease and has received a kidney transplant. Bob is a former Tour Manager for the Mr. Diabetes Wake Up and Walk Tour. Bob has a great attitude and shows how a disease can be dealt with rather than be your life. Thank you, Bob!
 
Living With Kidney Disease
By Robert Brooks

Kidney disease for me started when I was about ten years old.  I had a condition called Bladder Reflux.  In short, this is when your bladder allows urine to back up into the kidneys causing damage.  In my case this was irreparable damage.  So, at ten I was told that it was a matter of when, not if, my kidneys would fail.  As any ten year old, I had no idea what this meant so I just went on with my childhood.  I had periodic doctorís appointments but, other then that, it didnít affect me.  That is, until I was in College. 

In 1994, the summer before my first year of College, I had a fistula installed in my right arm, one of the access points for dialysis.  Even though this was a surgery I was eighteen and as any eighteen year old I was invincible.  The problem was that my kidney was in its last stage of failure before I would have to start Dialysis.  I was lucky enough to finish my second year of College before it completely failed but only by 5 days.  On that fifth day a good friend of mine told me I had to go to the doctor or he would drag me there himself because he had seen just how sick I had been over those five days.  I did go, and around 3 in the morning I had two needles stuck in my arm.  To this day I canít explain how scary this was because until that point this disease was in the future and now it was real and it was now.

To start with, Kidney disease (also called End Stage Renal Disease or ESRD) can come from many problems, mine is just one example and probably one of the less common.  One of the most common causes of ESRD is Diabetes.  The unfortunate part of this is that controlling your Diabetes can all but prevent the onset in the first place, but Iíll leave the exact cause and effect to the experts. 

As with any organ in the human body the kidney doesnít have just one function.  The kidney is best known for filtering the blood and producing urine.  This is the most important function of the kidney but far from the only thing it does.  It also helps regulate certain levels in the blood such as: Phosphorus and Potassium, as well as helping the body in the production of red blood cells.  The reason I bring this up is, as your kidney is failing, these functions stop working properly and your body becomes very sick. 

As I look back on my last semester in college I should have realized that something was wrong, as I was tired all of the time, and I mean really tired.  I would leave my apartment for my morning class, go home after my classes and take a nap.  The problem was that I would sleep the rest of the day.  I would wake up to eat and do some homework and then go back to bed as if I had never taken my afternoon nap.  As I said, this should have been a sign.  So, back to that fateful night with the needles in my arm. 

When your kidneys shut down you have a couple of choices.  First, you start a procedure called dialysis.  This is the process of filtering your blood with a machine and an artificial kidney.  Picture the artificial kidney as a large oil filter like the one on your car.  Your second option, which in my opinion is far less desirable, then Death.  Please make no mistake, your body will become toxic because you are no longer able to filter your blood and you will die.  The procedure is very simple from the patientís side, you pull blood out of one needle, it flows through the filter, and then returns to your body through the second needle cleansed.  That said, the science of the process is amazing and I wonít begin to tell you that I know it. 

There are 2 types of dialysis: Hemodialysis, and peritoneal dialysis.  I will focus on Hemo since it is the only method I have used.  One of the main things needed to do hemodialysis is an access point.  There are a few types used, a catheter can be placed in your chest to remove and return the blood, then there are a couple types of grafts that can be placed in your arm, leg or anywhere you have good veins.  The doctors will determine what will work best for the individual. 

In my case it was decided that a Fistula would be used.  A fistula is a natural access point where the surgeon will take a vein and artery and connect them to make one large vessel, large enough to accept large needles over and over again.  Iím sure most of you have had the unpleasant experience of an IV infiltrating and the bruise that follows.  This is why the access point needs to be large enough for those large needles.  You canít have them infiltrating all the time or you would never get a good filtration, not to mention the pain that would go with it.  Once you have the appropriate access point you can start. 

As I said earlier, dialysis is a very scary thing, but you need to look at the whole picture.  You are going to need to adjust to the idea of it as well as the actual process.  This will take some time, but as you learn what you can and cannot do, slowly you will adjust to it.  In my case, I started out in the emergency room and was then placed in a dialysis unit nearest my home.  The nursing staff was fantastic, they helped me understand that this wasnít the end of my life; it was just another part of it.  I was lucky to have had a positive attitude throughout.  I was confident that at my age (20) and in good health, with the exception of the kidney, I would be a good candidate for a transplant. 

As it was,  my entire family was willing to be tested to see if they could donate.  My sister was the best match and fortunately she was willing to give me a true ďgift of lifeĒ.  I did spend two and half years on dialysis before my transplant took place but this was to make sure everything was just right so I wouldnít have any complications.  On November 13, 1997, I received my new kidney. 

One of the most important things I can say about kidney disease is you have to bring it down to a level you are able to understand and deal with.  You need not focus on the why, or what could I have done differently;, rather focus on how itís going to affect your daily life and how you can keep living a productive and meaningful life.  I achieved this partly by being naÔve, but mostly by looking at what I can do rather then what I canít do. 

You are on the dialysis machine for 3 to 4 hours per day three times per week.  You have 168 hours in a week and you are on the machine for 9 to 12 of those hours.  If you look at it this way it doesnít seem that bad.  Iím not trying to sugarcoat this at all.  Some days you will feel lousy after your treatment, but most days you will just feel drained.  You are still able to travel, as your dialysis center can set you up with other dialysis centers throughout the country, you just have to plan in advance.  I have had dialysis in several places in Florida, Ohio, New Jersey, Georgia and probably some others that I have forgotten.  Some cruise ships even offer dialysis.  The moral here is, donít sit around and dwell on the negative, focus on living your life.  Donít let dialysis become your life. 

After my transplant my body became healthy again and I could feel my energy level increase almost on a daily basis.  I was able to go out and get a full time job and finally start a life for myself.  If this sounds like it contradicts what I have said about living while on dialysis, it isnít meant to.  Remember, I was 5 days out of college when I started dialysis so I wasnít able to get a job or any of the things you are to do when you finish college. 

Now I was able and havenít looked back for a minute.  I have been fortunate enough to have travelled America as a Tour Manager for the Mr. Diabetesģ Wake Up and Walkģ Tour.  During this journey Mr. Diabetesģ and I were able to speak on many occasions about the close link between Diabetes and Kidney disease.  The main goal being to educate people that if they take control of their diabetes, they might not have to face kidney disease in the first place. 

The most important part of living post transplant is compliance.  Taking your medications as directed, seeing your doctor when scheduled, and having your blood tested as directed.  Iím sure I did things that I wasnít supposed to do, but I always took my meds and followed my Doctorsí orders.  I was lucky enough to get 12 good years out of my kidney with very few minor complications along the way. 

Sometime in early 2009 I was given the news that my kidney was suffering from chronic failure.  This isnít uncommon, as a good transplanted kidney lasts between 10 and 15 years (longer with todayís medicine ).  I started the process of being placed back on the transplant list with hopes of being transplanted before I would have to start dialysis again.  This unfortunately would not be the case, and in mid June 2009 I had to start dialysis for the second time. 

This time would prove to be more difficult, as I have a full time job managing a car lot.  Working six days a week plus dialysis was difficult, but I was unwilling to give up my job as I fully enjoy the life that I have made for myself.   Once again I am very fortunate that the owner of Magna Auto Sales, Mike Magna stood behind me the entire time.  I couldnít have asked for someone to be more supportive and understanding.  He allowed me to come in at 10:30 rather then 9:00 to accommodate for my early morning shift at the local dialysis center.  He knew that I wasnít working at 100% but he knew that I was giving every effort that I possibly could.  I worked this schedule from June 2009 until January 2010 when I got ďThe CallĒ. 

The Florida Hospital Transplant Center called me around 11pm on Jan 14 to say that they had a kidney for me and to come in immediately.  I was transplanted for the second time on Jan 15, 2010.  Once again I could feel my energy come back, this time in just a day or two.  I was released from the hospital 5 days later.  As I am writing this, I am not even 6 weeks post transplant and have been back to work for over 3 weeks.  I have to take some precautions as wearing a mask if I am around sick people, or in big crowds.  I am very happy to say that my labs are good and I feel better than I have in over a year. 


I guess if I have any closing words it would be this:  Kidney disease, like any disease is something that needs to be taken seriously and monitored by both your doctor and yourself, but with the correct course of treatment and the right attitude it will become just another part of your life, it doesnít have to become your life.



Updated April 2011
 
 
 
 
 
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