Author Archives: Gary

Inspiration, Hope, and , Grateful!

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A couple of weeks ago I created this blog to chronicle my journey with my kidney disease known as Alport Syndrome, and that at a time in the future, I will need a life saving kidney transplant. As I have said before, I am not comfortable asking for help but was told by the doctors to start the process and so I did. As a result of my first blog post, the reaction I was received from my friends has been truly amazing!! I can think of three words that come to mind that describe how I feel:

Inspiration— I am truly inspired by all of you for your friendship and support which has been beyond belief! I have had friends near and far re-post my blog and ask their FB friends to consider donating a kidney! I am grateful for the response and positive feeddback!!

Hope- As a result of the response by my wonderful friends, it has provided me with incredible hope that I will indeed find a living donor which is my best chance for long term survival!

Grateful- I cannot overstate how grateful I am for the support and concern!! After all, we are talking about the possibility of someone saving your life!! How do you thank someone for that? There are no words, but the best way I think would be in my actions and how I live my life and to somehow “pay it forward” in some way in the future.  Yeah, I think that will be the best way!

Update on what I have been doing—

In the meanwhile, doctors have recommended I get on the transplant waiting list for a cadaver kidney as insurance in case I do not find a living donor, since the waiting lists are 3 to 5 years.

Therefore, I have been trying to get on the waiting list in 4 states that have great hospitals within a 2 hours drive from my house so I can get there as soon as possible. This week I went to Yale-New Haven and had to get a bunch of tests and meet the doctors. You see , each hospital has certain requirements regarding tests required to be accepted into their program.

You actually have to be in good health to be able to be on the list or even get a living donor transplant! Isn’t that kind of ironic? Anyway, so far, I have done well on every test including a colonoscopy I had on Friday where the worst part if the prep-work! Many of you that have had this know what I mean!

In closing, I am truly grateful for all of you and am so hopeful now!! Until next time……..

 

Your Grateful Friend,

I WILL NEVER QUIT!!

Gary

 

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My quest for a life saving gift!

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imageHi, My name is Gary Kawka and I am 57 years old , a husband, a father, and someone who really loves life! I am on a quest to ask someone for the ultimate gift, a life saving kidney to allow me to get a kidney transplant to continue to live life to the fullest. I am usually not one to ask for help but I am put in a position where I must! In 2008, as a result of a blood test followed up by a kidney biopsy, I have been diagnosed with “FSGS”, Focal Segmental Glomerulosclerosis which is basically a hereditary kidney disease that progressively scars the kidneys and eventually causes kidney failure. My kidney function has been decreasing by about 3% per year and I am now at 20% kidney function. Typically, once your kidney function falls below 10% you either get a kidney transplant or go on dialysis. Those that go on dialysis typically live a very short and difficult life. A kidney transplant is the recommended solution and the ones with the best outcome are those from a living donor versus a cadaver kidney. Also, the waiting list for a cadaver kidney is quite long and in my case, may be up to 4 years which puts me at a very challenging timeframe quite possibly needing dialysis first which would definitely shorten my life.

A little bit about me—–

As I said, I am a husband to my wife Carolyn, we met 40 years ago and have been married for 35 years. We had 3 children, my daughter Meghan, who lives in the UK, my son Matthew (more about  Matthew below) and an unnamed child who died in  a miscarriage. My son Matthew, who was an awesome son, had am autoimmune disorder that affected his liver that was discovered when he was 3. In 2005, Matthew became very sick and after  many tests it was determined that he had Non Hodgkin’s Lymphoma, a blood cancer. Matthew fought a very tough fight but passed away on   December 7, 2005 in my arms. He was 18 years old! In 2007, I got involved with Team in Training to benefit The Leukemia and Lymphoma Society to help fight the disease that took my son by raising funds and  running in marathons. I became a coach for Team in Training in 2010 and have  helped train many participants to run a  marathon and fight the disease. Since starting this journey, I have raised about $134,000 for the cause. I have a motto that is now repeated accross the state of NJ that “WE MUST NEVER QUIT!!” until a  cure is found.

I am now in a fight for my own life and now need the help of others and possbily a stranger I never met to donate a kidney to save my life!! This is my personal challenge now and I am up for the fight but need your help!!

Please see the attached pages/links to learn more about  my disease and how you can help as well as the impact it will have on your life and mine!

Thank you for even considering such a noble cause and I leave you with my new motto:

I WILL NEVER QUIT!!

Gary Kawka