Hi! I have had a very busy last 3 weeks getting tests completed and at the same time getting ready for the Marine Corps Marathon. It has also been very exciting getting ready for my 11th marathon with so many friends that will also be running with me!  At the same time, it has been exciting personally regarding my illness since a lot of progress has been achieved in a short time!

Here is a sampling of what I have been up to:

Completed a colonoscopy, echocardiogram, several blood tests, saw my regular nephrologist, saw a transplant surgeon, got on the transplant waiting list in Connecticut!

I also signed up for a possible study on my illness known as Alport Syndrome at NY Presbyterian. I will get tested on November 23rd to determine if I meet the requirements. If I do, I will be followed with blood tests and exams every 3 months for a period of time. The good news here is that there is also a medication that is currently being tested on mice that looks promising to block any further deterioration of the filtering process that is caused by this disease. At the completion of the study, the study participants will have the first crack at getting the experimental medicine which means I may get a chance to use it. Although, at the rate of my advanced disease it may not happen for me, but studying me will still benefit others including my daughter who has this as well. So, there is no downside here! Very exciting!

I am also very excited and thankful for all of my dear friends who have offered to be donors! This is truly amazing and giving life and hope!!! I am speechless and humbled tremendously by this! Also, I am thankful for those who have shared my posts and have expressed sincere interests in helping me in any way they can!

Finally, I am about to take part next week in my 7th Marine Corps Marathon in a row with amazing friends! How can you top that!!!

Until next time!

I WILL NEVER QUIT!!

Gratefully and Excited, Gary

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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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