Thursday, May 17, 2012

Happy One Month Birthday Blog!!!


One month ago with the guidance of my son, Greg, and my daughter-in-law, Camille, I started this blog.  It has been one of the best decisions of my life.  During this past month I connected with people I did not know, but who were going through similar journeys like ours.  I connected with friends I had not been in contact with for years.  I connected with family members I had not talked to for a long time.  And I made new friends along the way.  This blog has empowered me to try and make a difference in others’ lives.  And I thank all of you for your continuing prayers and support.  It is AMAZING!!!!!

I wanted to provide you all with an update on Ken. Things are status quo with him at this time. The concern is that the longer he is on dialysis the more the doctor has to adjust the treatment to keep him feeling okay. It is the law of diminishing returns in effect. Dialysis does not take the place of his kidneys.  Those hard working kidneys are sophisticated reprocessing machines that help filter waste, excess fluid and toxins from your blood. Dialysis can replace some of the kidney’s important functions, but cannot take the place of a kidney.  So the journey continues for the “gold standard treatment” of End Stage Renal Failure (ESRF), a kidney transplant. Finding a kidney for Ken continues to be our ultimate goal. Ken and I are keeping the faith and are hopeful there will be good things happening in the future. 

Also, I have recently received quite a few questions from many of you sent to akidneyforken@gmail.com and so I wanted to take this opportunity to answer a few of them. I am naming this segment “Pat’s Mailbag.”

How did Ken get this kidney disease?
As I have previously stated, Ken was an active man who exercised regularly and took care of his health.  He went in for his yearly checkup and the doctor noticed a high level of protein in his urine.  He had no symptoms and was feeling great.  As we learned later, many people may have a kidney disease, but don’t realize it until symptoms develop.  By that time permanent damage has been done to the kidneys.  Luckily, we caught it early thanks to his annual physical. After a kidney biopsy was done, Ken was diagnosed with Membranous Nephritis. But the cause was unknown. No one in his family had any kidney problems.  Ken did not have underlying conditions like diabetes or high blood pressure that could cause kidney disease.  After more tests were completed the cause of Ken’s kidney disease was classified as idiopathic (arising spontaneously with the cause unknown).  We learned that 75% of all cases are from unknown causes.

How does one become a potential donor?
This question has come up quite a bit which is a testament to the amazing individuals following this blog. First you must have a compatible blood type to be considered.  Ken has B blood type so only a B or O blood type could be considered as a possible donor.  It does not matter if your type is positive or negative. If you do not know your blood type, one easy and great way to find out is to donate blood at your local American Red Cross. They will give you a donor card listing your type. The next step would be a phone interview with the Kidney Transplant Coordinator at Ochsner Hospital in New Orleans. This is the hospital where Ken is a patient and would have the transplant surgery. The transplant coordinator decides if the person is a potential donor.  After that, a series of blood tests are performed to see if the potential donor’s blood and Ken’s blood are compatible. Once these tests are done and the results are favorable, the donor would be required to spend one or two days taking more tests to assess his/her health.  If you want more information on becoming a donor, please email me at akidneyforken@gmail.com and I can put you in touch with the transplant coordinator at Ochsner.

How can I get “A Kidney For Ken” shirt?
Lastly, people have been asking about the shirts Greg and Camille wore at the marathon in Vancouver.  We are still trying to get information on cost and ordering.  We will be posting it on the blog as well as sending emails to those of you who have expressed interest in the shirts.

Keep the questions coming to akidneyforken@gmail.com. I love hearing from you all!

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

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