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!

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.”

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.

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 Day… http://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).

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!

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.

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 naïve, 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.