The Past Year

Welcome to my very first blog posting ever. I am honored and humbled that you would take the time out of your busy day to learn about the latest on Ken’s health situation and join our family on this journey to find Ken a kidney. When I asked my son’s opinion on what to write in this first post, he said “Tell them how Dad is doing and what transpired this past year.” And so I have taken his advice and will start my story on this exact day last year, a one year anniversary that I would like to forget. 

It was last year around this time that Ken’s kidneys starting to shut down at an alarmingly fast pace.  He had an appointment at Ochsner Hospital to have a workup done to see if he was a candidate for a kidney transplant.  He was not feeling well but wanted to start this process as soon as possible.  Ken had been living with this kidney disease since 1998.  Here we were in the spring of 2011 and his kidneys had been functioning for 13 years with this disease.  During those years Ken ‘s blood pressure and cholesterol had to be regulated with medicines.  He had to eat a low sodium diet but we made those adjustments together. He still led an active life taking vacations and playing golf.  In the summer of 2010 Ken and I took a trip to Mayo Clinic to get another opinion.  After taking tests for a few days, the doctors recommended a drug that had adverse side effects. Ken and I decided that his quality of life was still good and the risks were too high.  But less than a year later here we were at Ochsner in April 2011 and the news was not good.  They told him he was so sick that he had to immediately go to his nephrologist for treatment – that treatment was dialysis.  This was the one thing Ken did not want.  Now the choice was no longer his.  As a family we learned about the different types of dialysis and decided on peritoneal dialysis – which is an at home treatment that the patient does when they sleep at night.  It would allow Ken to work and lead a normal life during the day.  Ken had to have a catheter surgically implanted in his abdomen.   This catheter carries the dialysis solution into his abdomen. The peritoneum allows the waste products and extra fluid to pass from his blood into the dialysis solution that is then drained from his body.  Check out this brief YouTube video of the peritoneal dialysis process and home system we use. http://www.youtube.com/watch?v=8ET6_HPNPJU

Needless to say, the month of April was a rough time for all of us.  Ken was so sick and the catheter was leaking because the incision site needed a longer time to heal.  There were nights where Ken slept in the recliner and I was next to him on the sofa.  He was so weak I had to push him in a computer chair to the bathroom but we knew dialysis would make him feel better.  Finally the day arrived and I was faced with a new dilemma.  I had to learn how to be a dialysis nurse.  Now I am an educated person with a Masters degree but this was like learning Greek.  I was not familiar with anything.  Being so weak and anemic, poor Ken slept through most of the training so I was by myself.  The nurses made fun of me because I wrote down everything.  I practiced and practiced on the machines at the clinic.  I “contaminated” the imaginary patient many times. At night, I would dream about connecting and disconnecting Ken from the machine.  It took over my life, but those of you that know me know I do love a challenge.  I would get this routine down to a science.  I am happy to say I did but laughed and cried many times along the way.  To this day, Ken is connected to the machine every night and does dialysis for 9 hours as he sleeps.

In terms of kidney donors, Ken has a blood type B which means he needs a donor with the same blood type or blood type O. B is unfortunately the rarest of blood types and so the average wait time for a kidney in the state of Louisiana for blood type B is five years. So we realized that we had to be proactive in finding a living donor. Unfortunately, we extinguished our options within the family rather quickly as no one had blood type B or O. In the summer of 2011 my dear friend Charlotte called me and said she wanted to give Ken one of her kidneys.  This still amazes me every time I think about this gift she was willing to give Ken.  She went through tests to make sure she was healthy.  As Charlotte told me afterwards she knows everything about her health now.  The testing process makes sure the donor is in perfect health.  And Charlotte was. The last test revealed that one of Charlotte’s kidneys was smaller than the other one.  They would take the small one, but it would not work in Ken’s body because of the difference in size. It was a devastating blow. We all cried, but were so thankful to Charlotte for offering this gift of life. I have included a link on the right side of my blog with information on becoming a living donor.

In the midst of all of this, our son Greg and his fiancé Camille were getting married in Park City, Utah.  The downside of at-home dialysis is that you have to stay home. We knew traveling would be a challenge so we took a “dry run” to the Gulf Coast for a night.  Although that trip was unsuccessful to say the least, we learned valuable lessons from the experience.  We were ready for the wedding now.  I coordinated with the supplier all the boxes we would need for the 5 nights of our visit.  I got the dialysis clinic to ship one of their machines to the hotel.  After many phone calls we got everything delivered and the supplies were waiting for us when we arrived.  It was a wonderful time having the whole family together to celebrate this joyous occasion.  Little did we know the machine did not like the change in altitude and would not work.  After our disastrous trip to the Gulf Coast I packed everything this time.  I even packed “my how to” manuals if the machine breaks.  I had to do a manual exchange.  I had never done this before but with the pictures and directions in front of me I setup the dialysis bags hanging from a standup lamp using my “creativity” from teaching Pre-K for 26 years.  It worked and Ken received some dialysis treatments.   The company mailed us a new machine the next day and all was well.  We enjoyed a beautiful wedding with family and friends in the most breathtaking surroundings. Finally, in November 2011 my whole family came together to honor Ken and support the National Kidney Foundation at their walk in Audubon Park – that is the picture of this blog. Family and friends supported us by walking with us and donating to the cause.  We could not continue on this journey alone.  It is with the love and support of our family and friends that help us with the challenges and rigors of dialysis and the kidney search.

On this one year anniversary, we are even more committed than a year ago to find a kidney for Ken. Starting this blog is one of the many proactive actions we are taking as a family. Again, I welcome you to the blog, and ask for your support in following us on this journey. I will be writing regular updates, sharing what I learn along the way, posting articles and videos, and will always be available to answer your questions or respond to your comments. I know God is guiding us on this path.  I love the prayer “Footprints in the Sand.”  And I truly believe that God is walking by our side through this journey called life.  When things get tough, you don’t see His footprints because He is carrying us.

Until next time, may the Lord carry us on our journey for a kidney for Ken,

Pat