Kidney Transplant: Cure or Treatment? 

I’ve already mentioned that there’s an active network of kidney disease awareness advocates… and that we find each other. I met Steve at a think tank last spring. I wasn’t really sure why I’d been invited, but as soon as he and his wife started talking, I knew why they were.

I hesitated to ask Steve to guest blog since, at the time, I was only writing about Chronic Kidney Disease. Since then, readers have asked me to write about all sorts of topics dealing with the kidneys, not just CKD. So I did. Steve and his thoughts on being a transplant fit right in to this new agenda. When I did ask him to guest blog, I received a return response that was one of the most gracious acceptances… and they’ve all been gracious. I’ll turn the blog over to Steve Winfree now.

The other day I was speaking with some friends and one made mention to me how incredibly lucky I was. I received a new kidney from my wife, Heather, just last year and I was feeling as if I were on top of the world. Given that fact, I had to agree with him, but I inquired further to find out what he meant. He responded that it must be such a relief to be cured and to no longer have to worry about kidney issues, dialysis, and the mess that comes with it.

That really got me thinking about what a kidney transplant actually means outside of the wonderful opportunity for a second chance at a more normal life. It also reminded me that there is a knowledge gap between those close to kidney failure and those who are not.

It is essential that, as a kidney transplant recipient, I clarify the difference between a cure and a treatment. Chronic Kidney Disease is a disease that progresses over time. This is due to the fact that CKD is a disease in which your body attacks your kidneys, or is a genetic disorder (PKD), or is a result of a primary disease such as diabetes and/or high blood pressure. The common factor among the types of kidney disease is that an outside source, not the kidney itself, is the reason for the issues.

This is why receiving a new kidney is a treatment and not a cure. A genetic disorder is still active in your body even when the new kidney is placed. Diabetes and high blood pressure can still be prevalent even with a new kidney, thus causing the implanted kidney to be affected in the same way as the old one. It is due to these reasons that a transplant is a treatment and not a cure. My new kidney has allowed my body to filter out the toxins much more easily, freed me from dialysis, and granted me the ability to get around easier since my arthritis was derived from my kidney disease.

The truth is that while this second opportunity at a much better life is an enormous blessing, the reality is that there is a good chance I will need another transplant one day. The reason is that the cause of my initial kidney failure is still within my body and attacking the new kidney. That is in addition to another main reason that a new kidney is not a final cure: organ rejection.

A new kidney is looked at as a foreign object by your body. Our bodies are designed to keep the body in balance and when something out of the ordinary, such as a virus invading, it attacks to bring balance back. The same is applied to a kidney that is transplanted from another source. Your body sees it as a foreign object and attacks it. That is why we must take immunosuppressant drugs to trick our bodies into not realizing there is a foreign organ inside.

With all of this being said about my new transplant being a treatment and not a cure, I want to mention how my life has changed forever. At the age of 33, I feel better right now than I have since I was a young teenager. My entire adult life has been spent in hospitals and doctors’ offices. I am now free to use my time to travel, enjoy life, and be the foster parent that I have always wanted to be.

A big part of receiving a kidney transplant is the medicine that is involved. The medicine you have to take every day is known as an immunosuppressant, or anti-rejection. While this is a medicine that you must take for the rest of your life, there are steps you can take to ensure that you are able to receive the medicine in an affordable manner. Kidney transplant patients qualify for Medicare. Medicare helps take care of a lot of the costs associated with taking these medications, but not all of it. The best advice I can give you in regards to your medications is to educate yourself on Medicare, MediGap, manufacturer coupons, and be in a close relationship with your transplant team’s social worker. It can be overwhelming at times, but I promise you that there are resources out there to help you!

I am extremely lucky in the fact that my wife, Heather, donated her kidney to me. While this is a treatment, it is the most remarkable and life changing treatment I have ever been blessed to receive! While all kidney disease patients would love to be cured, we understand that will never be the case, but that does not mean our lives cannot be just as remarkable and enjoyable with our treatments.

While we all watched our different renal diets during the weekend we were together, I never once saw Steve or Heather bemoan their new regiment with the transplanted kidney. While they talked about the exorbitant cost of the medications, they were accepting. One other thing I noticed about this delightful couple is that they were grateful every minutes of the time we spent together. I’m hoping Steve’s transplant lasts him as long as is medically feasible.

Until next week,

Keep living your life!

From Deficiency to Support

happy birthdayI was invited to their joint birthday celebration at The Hotel Valley Ho in downtown Scottsdale by one of my daughters and her good friend. That’s a place I’ve wanted to see since it has some historical value. It was nice, but what was nicer was sitting next to a young friend who happens to be a ball player. baseball player

We both ordered vegetarian dishes. (Their asparagus with lemon zest was very tasty.) He knows I have Chronic Kidney Disease and started talking about my renal diet… and the limitation of five ounces of protein per day. “Don’t you worry about protein deficiency?” he asked with alarm.

And that got me to thinking. According to The Centers for Disease Control and Prevention at http://www.cdc.gov/nutrition/everyone/basics/protein.html, as a woman above the age of 19 and all the way up to beyond the age of 70, I need 46 grams of protein a day.

Well, how many grams are in an ounce? I went directly to AskNumbers.com at http://www.asknumbers.com/OuncesToGramsConversion.aspx for the answer.  While I’m not innumerate (lacking mathematical ability), I don’t have the patience for long, involved mathematical formulations. That’s where I found both a convenient ounce to gram conversion calculator and a conversion chart.

According to the site,

“5 Ounces = 141.7476155 Grams.”

That’s way more than the 46 grams of protein required by a woman my age. So what was my friend concerned about?

Men in the same age range need 56 grams of protein as I saw on the CDC site mentioned above. That’s still only 1.9753418664 Ounces. This wasn’t making any sense to me.

Book Cover

I went right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition of protein:

      “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”

proteinI decided it wasn’t as important to know what they were as it was to know what they do.

I found the definition for hormones in my book:

                               “Gland produced chemicals that trigger tissues to do whatever their particular job is.”

Got it!  Sort of like a catalyst to get those tissues working.

I went to Dictionary.com at http://dictionary.reference.com/browse/enzyme for the medical definition of enzyme:

“Any of numerous proteins or conjugated proteins produced by living organisms and functioning as specialized catalysts for biochemical reactions.”

There’s that word ‘catalyst’ again.

Well, what about antibodies?  Using the same source, I found this:

                                                “A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin,

                                                    that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity. “

Lots of definitions here, but the important part is that they all explain how important protein intake is. I think my friend’s error was not in worrying about protein deficiency, but in getting the math confused.  I thank him for his concern nonetheless.

I think that’s as far as we can go with my friend’s concern, but I think I’ll address vegetarian protein sources before I leave the topic since we’re all pretty much aware of meat protein sources (although a few of those are on this chart, too). Check with your doctor to see if these are on your renal diet.

protein sources

 

Moving right along…some readers have asked for online support groups that are not on Facebook since they – these particular readers – aren’t. I’ve also included telephone and face to face support groups since I know some of you receive the blog when someone with a computer prints it out to give to you. Please remember these are not recommendations.  Some I know and are comfortable with, others are new to me.

My first suggestion – always my first suggestion – is DaVita.com at http://forums.davita.com/activity.php.  This is the same wonderful group that has brought CKD education into the community via SlowItDown and also offers CKD classes at their facilities throughout the world.

Lori Hartwell’s Renal Support Network offers periodic patient meetings (Go to http://www.rsnhope.org/meetingssupport-group/ to check availability and to register.) and online support at all times at http://www.kidneyspace.com/

American Association of Kidney Patients (AAKP) offers a listing of support groups by state at https://www.aakp.org/community/support-groups.html. Not all states are listed, including Arizona. These are in person meetings.

The National Kidney Foundation (NKF) has peer matching telephone support. You will need to be interviewed first.  You can find more information at http://www.kidney.org/patients/peers. You can also call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org to participate.peerslogo

WebMD has the Kidney Disorders Community at http://exchanges.webmd.com/kidney-disorders-exchange.

Drugs.com at http://www.drugs.com/answers/support-group/chronic-kidney-disease/ offers a forum type support group in which you ask a question and answers are offered.  This is not real time, but may prove valuable.

For my Australian readers, you can join a Kidney Club by emailing matty.hempstalk@kidney.org.au or calling 0404 177 748.  There’s more information at http://www.kidney.org.au/ForPatients/KidneyClubs/tabid/615/Default.aspx

There are even Meetup Groups for CKD patients.  Take a look at http://chronic-kidney-disease-ckd.meetup.com/.  Presently, there are two in the United States and one in Australia, but they are open to starting more.  Rephrase: Meetup is open to you starting one in your area.

The more I researched, the more I realized that each state, and even each city, in the U.S. has their own groups.  I gather it’s the same in other countries.  If none of these is what you’re looking for, I’d suggest an online search for CKD support groups in your area.support

There are also blogs about CKD… and you thought mine was the only one.  Again, I’m not recommending any of these, simply informing you they exist:

From Mexico – http://mychronickidneydisease.blogspot.com/

Well this is surprising.  Despite researching several times, I couldn’t find any other blogs from a patient’s perspective that are still in existence.  I have not included the blogs on the support groups I listed above. Perhaps you know of some others?

It’s been a heck of a week.  Thank you for your good wishes for my dog.  Sweet Ms. Bella has her stitches removed and then sees the oncologist on Wednesday. She is a delicious being!IMAG0093

Now we also need to deal with other being’s physical conditions.  It seems I’m the healthiest one I know, even with the CKD. Hmmm, wonder if it has to do with our age group.

Until next week,

Keep living your life!