Hi Everyone!

It has been a few months since my last blog post and I thought I would give everyone an update:

–A little background—I started this journey 9 years ago when I was initially diagnosed with FSGS which was later correctly updated to a diagnosis of Alport Syndrome, a genetic kidney disease that basically destroys the filtering membrane on your kidneys and over time causes kidney failure. For years, I thought I could keep it at bay by diet and exercise but it wasn’t to be! So, 2 years ago it was determined that I would need a kidney transplant some day, it is just happening sooner than I expected.

–Update–After some additional testing in January and early February it has been made clear that my kidney function continues to decline at an accelerated pace. Therefore, the doctors have all agreed it is time to schedule the transplant!

–I am so very fortunate to have an awesome friend, human being,  who has stepped up and is willing to give me the gift of life as Shawn has done! This is such an amazing and selfless act that no words can adequately express how thankful and appreciative I am.

–It is so ironic that through the tragedy of the death of my son, Matthew, I have met so many caring, selfless, amazing human beings that I now call my second family. And, on top of that several came forward willing to be tested to give me one of their kidneys!

–Shawn went though all of the extensive tests and meetings with a smile on her face, never complaining and always telling me calmly that she is ready!! Shawn is a true real life hero because she is saving my life and I will be forever in her debt!

–So, the date is set! Kid TNT will be born on March 1st, 2017!! And, I will get a new lease on life!!

How amazing is that?

Until next time!

I WILL NEVER QUIT!!

Gary

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Hi Everybody! It has been almost 4 months since my last post! Time is moving so fast!

Here is my latest update:

I hope everyone has had a wonderful Fall!  I have now been out of work almost 9 months but the time has gone by so fast that it doesn’t seem quite that long. I guess that must be a good thing!

Here are some things I have been doing since I last posted:

–Successfully completed the personal training course through NASM and passed the exam! I am now a NASM CPT!

–Completed the Chicago marathon in early October with some friends. It was a great course with amazing crowd support. I would do it again and plan to in the future! Still need to PR there!

–Completed my 8th Marine Corps Marathon at the end of October with Team in Training! This was my 16th Team in Training event! It was a rough day with temps in the 80s for the last hour or so of the course but I finished in a reasonable time considering the heat.

–Decided to do the “the trifecta” and did my 3rd marathon in 6 weeks, The Philadelphia Marathon, which I did with my friend Paul Moat. It was the total opposite of MCM, it was extremely windy and cold! By the way, this was my 14th marathon!

–My daughter, Meghan, and son in law, Keith paid us a visit in November. It was a great time! Although, only had a week together but we made the best of it.

Here is an update in my Alport Syndrome/Kidney disease:

–I have just recently received additional testing and it appears my kidney function continues to decline now at a very accelerated rate.

–I still feel great and have had no real symptoms from the kidney disease other than seeing the results through my bloodwork. I am still able to run and help people train for marathons. The doctors feel this is healthy for me to continue staying very active as long as I properly hydrate.

–The Dr estimates I will now need a kidney transplant in 2017.

–I am still in the study group for Alport Syndrome and will be through February. After that things will get sketchy depending on where my kidney function is and how I am feeling.

–I am getting some follow-up tests in January to more closely watch how quickly my kidney function is dropping.

To sum things up, this had been an amazing year! I am trying to enjoy life to the fullest! I am not going to let my kidney disease define me or stop me from doing all the things that I am very passionate about!

I am also extremely fortunate  in that I have a wonderful angel on earth, my awesome friend and living donor (Shawnie), and 2 other amazing friends that are my back-up donors just in case! I am in awe of these wonderful friends that are willing to selflessly give the gift of life to me! How do you ever find the right words or deeds to show your appreciation? I am trying and hope I convey how extremely grateful I am! Living donors are true heroes!

Until next time,

I WILL NEVER QUIT!!

Gary

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Hi Everybody! It has been a few months since my last post so thought I would give everyone an update:

I hope everyone has had a wonderful summer! I know the summer seems to have flown by! I have now been out of work 5 months but the time has gone by so fast that it doesn’t seem quite that long. I guess that must be a good thing!

Here are some things I have been doing since I last posted:

–Still working on the personal training course through NASM. Expect to complete by early October.

–Been training with Team in Training for my next Marine Corps Marathon in October. It is always an awesome experience to train with such amazing and selfless people! Also, there is the first time in many years that I not coaching for the team this season so that I can just focus on my training.

–I am also training for the Chicago Marathon which actually takes place on October 9th which is 3 weeks before the MCM.

–Did some cannings to continue to raise funds for the MCM for LLS/TNT and there were some generous people out there!

–Enjoying the summer with my wife Carolyn and my pets!

Here is an update in my Alport Syndrome/Kidney disease:

–I have just recently received additional testing and it appears my kidney function continues to decline now at a more accelerated rate.

–The Dr estimates I will now need a kidney transplant within the next 12 months! This is sooner than previously estimated.

–I am still in the study group for Alport Syndrome but was also told that my kidney function now is too low to be able to get the experimental medicine. Although, my participation in the group will still help future people because they are still learning so much from current patients.

–My next testing and review will take place in November.

To sum things up, life is full of challenges and you have to face them head on and live each day to the fullest! I plan to continue to enjoy my life and get past this challenge. I am also extremely lucky in that I have a wonderful angel on earth, my living donor (Shawnie), and 2 other amazing people that are back-up donors just in case!

Until next time,

I WILL NEVER QUIT!!

Gary

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Hi Everyone!

It has been a few months since I posted so I thought I would provide some recent updates.

Since I last posted, the following has happened in my “new normal”:

-I took a course and got certified as a member of the local Community Emergency Response Team (CERT). CERT gets called upon to help their local community in cases of disasters and emergencies. Many times, CERT members may be the first to assist in a local emergency until the professional first responders arrive! I am looking forward to doing my part!

-I was an event coach for the San Diego Rock N Roll Marathon and Half Marathon for Team in Training. All the participants did awesome! It was a wonderful experience!

-I have begun training for the Chicago and Marine Corp Marathons which will both be in October. I am doing the Marine Corps Marathon for the 8th time for LLS through Team in Training program!

-I signed up to start my certified personal training course through NASM which begins this week. It is a 9 week program followed by a certification exam and some required shadowing of another CPT for a set number of hours for me to get my certification.

-I have been enjoying each day with my wife Carolyn, and my pets, (especially my awesome parrots)!

Also, let me give you a few updates on my Alports Syndrome condition:

-I had a follow-up test in May where they measured my blood to determine my exact kidney function. My kidney function has decreased from 33% in November to now at 29%.

-Based on this result, my Dr. Estimates I will most likely need a kidney transplant in less than 2 years but it will really depend upon my creatinine numbers and how I am feeling. So far, I STILL feel great with no noticeable impact on my physical condition! Actually, my Dr. has stated that I am probably one of his healthiest patients because of my marathon training and maintaining a high fitness level!

-The study nurse tells me that it is now uncertain if I will get access to the experimental drug to see if it will stop the destruction of the filtering membrane on my kidneys by the end of the year . It will really depend upon the criteria established by the testing Pharmaceutical company which has not been fully determined yet but will be before the end of the year. So, I will have to wait and see.

The good news:

-I have a loving wife and a wonderful daughter!

I have some amazing friends that are there for me!

-I still have my donor and back-up donors which is so amazing and selfless!

So, overall, I am very  optimistic!

In the meantime, I am enjoying my “new normal” ! I will also make sure that I continue to do the things that I am most passionate about and love! After all, you need to live each day to it’s fullest!

Until next time,

Gratefully yours,

I WILL NEVER QUIT!!

Gary

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Hi Everyone!

It has been a few months since I posted so I thought I would provide some recent updates.

Since I last posted, I have left the company I had worked at for over 36 years due to my company being acquired and many positions being eliminated including mine. I have been really enjoying my new found freedom! I do have plans to eventually become a personal trainer so that I can do something I really enjoy which is helping people gain fitness as I have been able to do. I also completed the Road Runners Club of America coaching course to become a better run coach.

Other updates:

I am the event coach for The Leukemia and Lymphoma Society for the San Diego Marathon with many amazing participants that are also friends of mine! I just got into the Chicago Marathon through the lottery process! I am going to do MCM again in the Fall!

Also, let me give you a few updates on my Alports Syndrome condition:

-I had a follow-up test in February and my kidney function continues to decrease.

-The Dr. Estimates I will most likely need a kidney transplant within 2 years but it will really depend upon my creatinine numbers and how I am feeling. So far, I feel great with no noticeable impact on my physical condition!

-The study nurse tells me that I will get access to the experimental drug to see if it will stop the destruction of the filtering membrane on my kidneys by the end of the year which is great news!

-I go for my next precise blood test to evaluate my current kidney function in May.

-I still have my donor and back-up donors which is so amazing and selfless!

So, overall, pretty optimistic situation!

In the meantime, I will enjoy my new found freedom in this whole new world for me! I will make sure that I do things that I am passionate about and love! After all, you need to live each day to it’s fullest!

Until next time,

Gratefully yours in this whole new world!

I WILL NEVER QUIT!!

Gary

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Hi Everybody!

It has been awhile since I last posted. We are now well into the new year and there are many new beginnings and some endings happening for me. Here is a quick summary of my new beginnings this year:

-I start officially taking part in the Alport Syndrome study for my disease tomorrow after successfully meeting the criteria as a study participant last November.

-I was officially named the event coach for the San Diego Marathon for Team in Training and have many amazing friends that are participants on this team!

-Effective April 1st, I will no longer be employed at the company I worked at the last 36 years! (This is actually and end and a beginning)

-I will embark upon getting certified to become a personal trainer.

As you can see, my life is definitely changing with some exciting new beginnings!!

Now, for an update on my disease, as I noted I start the study this week. I will be going every 3 months to get studied to understand how the disease impacts families. I also just found out this past week from my doctor that based on my current rate of decline of my “GFR” or kidney function, I may need a transplant in 2 years BUT there is also good news in that it appears they may be starting the experimental drug for the Alport study this year and I may get a crack at it! I will know more in the next several weeks but this is very exciting and hopeful!

I just want to close by again saying how hopeful and grateful I am to have such amazing people in my life that are willing to give so much of themselves! Especially Shawn Hoppe who has already completed all of the testing and is there for me when I need the transplant and the 2 other amazing people that are back-ups who I also am totally inspired by!

Heres to new beginnings!!

Until next time,

Gratefully and with such hope,

Gary Kawka

I WILL NEVER QUIT!!

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Hi everbody!

I want to start by looking back on 2015 and summarize all of the major milestones that have happened regarding my kidney disease:

-In May, I was told by my Nephrologist that I should begin looking into getting on the kidney transplant list due to my continued reduced kidney function

-Throughout the year I got tested and I got myself on 4 transplant lists in 4 states, NY, Conn., NJ, and PA!

-In July, I became aware through a genetic blood test that my daughter and I both have Alport Syndrome, a genetic kidney disease.

-In September, 4 awesome friends that I have met through tragedy (Team in Training) offered to be living donors for me (totally amazing!!)

-In October, I ran the Marine Corps Marathon with my potential donor, Shawn!!

-In October/November, Shawn Hoppe got tested and became my primary donor and I have 2 back-ups!!

-In early December, I met the testing criteria to be placed in a 2 year study for Alport Syndrome which could benefit me by giving me a chance to try experimental drugs at the end of the study or at the very least, I will help others including my daughter based on my participation!

I must say that this has been an amazing year! I started the year with major concerns regarding my disease and it only got worse when my Dr. told me I would need a kidney transplant in the next 2 to 10 years! If that was how the year would end, it would have been a pretty tough year but still nowhere near as difficult as the year I lost my son!!

BUT, it didn’t end there! Instead, I successfully got on all of the transplant lists I targeted, I got into  the study for my disease I so desperately wanted to, and last and most importantly, I learned what amazing friends I have through Team in Training! To offer to donate the gift of life through an organ donation!! This has given me HOPE, a bright future, and taught me that there are unbelievable friends out there that are willing to go the distance for me!!

I would say I had a pretty good year!! wouldn’t you?

I am truly looking forward to the new year and see what life has in store for me and you!!

Happy New Year to all!!

Until next time,

I WILL NEVER QUIT!!

Gary

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Hi Everyone!

It has been a few weeks since my last post and alot has happened since. I want to give everyone a quick update, so here is what has been going on:

-I was added to the donor waiting lists in NJ and NY.

-I completed my 4th kidney transplant evaluation at University of Pennsylvania Hospital in Philadelphia. I still have to go back in December for a final review with the cardiologist.

-Just this week I completed testing at NY Presbyterian for the Alport Syndrome study to determine if I qualify as a study participant. They did detailed blood work testing by injecting a chemical in my bloodstream and then testing over a period of 4 hours how my kidneys process it which will determine my precise kidney function. I have to wait two weeks for the results. I have to be above a certain threshold to qualify for the study.

Unfortunately, last week I was in a car accident, I am ok but my car didn’t survive!

Finally, what I really want to convey today and especially right before Thanksgiving Day this year, what a gift I have been given by some amazing, awe inspiring heroes that have offered the gift of life to be a living kidney donor for me!! There are 4 very special people out there and you guys know who you are! Especially, Shawn Hoppe who has already done so much by getting tested on my behalf!!

You know, since my wonderful, amazing, son, Matthew passed away, Thanksgiving and all of the holidays are not the same! A major piece of my heart is gone which always makes me sad and really upset especially around the holidays because I miss him so deeply and know how much he loved the holidays, but this year, because of these amazing people, I feel so very thankful and hopeful, more than I have in a long time!

So, I want to close with wishing you and your families a very Happy Thanksgiving!!

Until next time,

I WILL NEVER QUIT!!

Thankful and Grateful, Gary

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Hi All,

I have had an amazing last few weeks: 4 amazing people that are part of my second family (TNT) have offered to be kidney donors for me! and I ran the MCM 2015 Marathon with Shawn Roberto Hoppe, who happens to be one of the prospective donors!

I find it unbelievable that through my son Matthew’s tragic illness that I have  met such amazing, selfless human beings with Team in Training that may end up saving my life! Hard to fathom but it is true!! Somehow, I got to believe that Matthew is at work here!

What do you say to someone who is willing to donate a kidney to you to save your life? What kind of person would do such a selfless act? How do you show your gratitude? It is so amazing that I cannot find the right words that would be worthy of such a person but I do have one word that I think would be appropriate:

Hero! Anyone that is willing to save your life without expecting anything in return, is a true HERO! Now, if that isn’t inspirational then nothing is!

In the next few weeks I am still completing the process of getting on the transplant lists in 4 states just in case it is needed, and taking part in a study on my illness at NY Presbyterian known as Alports Syndrome so that I can help others including my daughter and possbily myself but in my case, there may not be enough time.

In conclusion, I am so grateful to the 4 heroes that have come forward to offer the life saving gift of a kidney. Especially, Shawn, who has already gone through so many tests on my behalf!!

Until next time,

I WILL NEVER QUIT!!

With humility and gratitude, Gary

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