Wednesday, May 27, 2009

Our Feature Film Début

Last Thursday was the Northwest Kidney Centers Breakfast of Hope fundraiser. It was a great event, filled with hope and inspiration for the future of kidney disease research. We were fortunate to be asked to share our story for the event, so a video was made of us talking about the challenges of living with kidney disease and shown at the event. I just received a copy of the final video, which I'll post below.

We met many wonderful people, made lots of connections and were endlessly humbled by the strength of people who live, like us, with these same challenges. Thank you to all who attended the event with us, we feel very loved and supported by all of you!

video

Tuesday, May 19, 2009

Fighting words

I was checking out the Seattle Times article this morning and noticed all the comments made to it online. All good except for one very cynical individual who has jumped to some grand conclusions about Darren's situation (ie: that he did this to himself). My first Mother Hen reaction is to hunt that individual down and let them know the reality...however, after thinking about it, it seems a better approach would be to bombard them with our own comments to the article. So, if anyone sees fit, I'd encourage you to take a moment to overrun one sad individual's comment with many good and insightful comments. I mean no ill will to "pcadmingirl" from Capital Hill, WA...and in fact feel a little sorry that she/he lives in such a small mind. Too bad small mind learned to type.

Here's the link again, go get 'em! "Living with kidney disease"

P.S. I've heard that adding images to postings increases traffic, so here's a photo that shows how we feel about bad comments!



Words from a loving brother

Darren's brother, Mike, called last night to say he was having trouble posting a comment to this blog. I was, as I am every evening from 6 to 10pm, consumed with a lively child... so Darren told me Mike would email me his comment and asked that I would just add it to the comment section.

Well, what Mike failed to mention (thanks a lot Mike) was that I shouldn't read what he wrote when at work otherwise people were going to ask what was wrong with the blubbering girl sitting at her desk. (Allergies is my answer...)

This message—from a very loving older brother—does not deserve to be a "comment."

***********


After reading the article today by Jerry Large [Living with Kidney Disease], I sat thinking and began to play Monday morning quarterback. What else could Mr.Large have said to drive the importance of this situation home? After contemplating the 'woulda's, coulda's, and shoulda's, my mind shifted to the positives. Thank God Mr. Large has seen fit to shine the light on not only on my brothers situation, but on the situation of kidney disease and its effects on individuals and families as a whole. Mr.Large's macro approach to shining the broad light is very welcome and necessary. When more people become informed of the the relatively simple testing procedures and the amazing and gratifying sense of selflessness and the knowledge that their deed has in fact provided the mercy and grace that we all pray for. Thank you Cynthia for not only saving my brothers life, but for providing an example for those who choose to donate or at least are contemplating the idea. Thank you Sara for taking the micro approach and shining the light on Darren's ordeal and making it personal. You single handedly have provided family & friends with hope and most importantly knowledge. With a soldiers spirit and an angels heart you choose to fight the good fight. You started a dialogue where before, people have been silent. You informed people whose minds were previously closed to the idea of donating. Most importantly you have given my brother the ability to see the possibility of living a long life; the ability to see Alice growing up; the ability to experience honest and selfless love. For this I will always be grateful. For all of you bloggers out there, you are being educated and informed. Spread the word, get tested, save a life; at the very least sign the back of your drivers license.

Michael Patillo

Monday, May 18, 2009

Seattle Times article link

Pretty nice article in today's paper on Darren written by Jerry Large at the Seattle Times:
http://seattletimes.nwsource.com/html/jerrylarge/2009231670_jdl18.html

Thursday, May 14, 2009

Breakfast of Hope: Staring the Patillos

The Breakfast of Hope is a fundraiser Darren and I are involved in for the Northwest Kidney Center (NKC) and the Kidney Research Institute. The NKC is a non-profit organization that supports dialysis patients in the Northwest. Darren went to their centers for his dialysis up until about a year ago, when they trained him to do home hemo dialysis. Basically, they keep us armed with the supplies and knowledge to keep Darren alive (and for that, I support them 100%!).

The NKC has teamed up with UW Medicine to create the Kidney Research Institute. This is particularly exciting for us as they will focus research on early detection, improving treatment and delaying or even preventing the need for dialysis altogether. Darren's kidney failure is hereditary, so we obviously are in full support of any dedication to the area of prevention as it relates to our daughter and the next generation.


Darren and I were asked by NKC to be the feature patient/family for the Breakfast of Hope event. So we recently became movie stars for the video they'll show at the event (and by "movie stars" I mean 5 minute documentary participants). Click here for a sneak preview. On top of that Darren has been interviewed by Seattle Times columnist Jerry Large for his column coming out on Monday (5/18). We'll relish in our 15 minutes (okay, maybe 5 minutes) and hope that it will bring greater awareness to the desperate need for research in the area of kidney disease and the 400,000 people affected by it today. We feel pretty honored to have an opportunity to take this challenge in our lives and use it to give back.


The Breakfast of Hope is next Thursday, May 21st at the Westin in Seattle. I'm sure there are more seats if you'd like to attend and see Darren and my heads larger than life on screen (oh my). Thankfully our daughter is in the video and will surly steal the show! We're also happy to sign autographs afterwords, first come first serve. ;)

Tuesday, May 12, 2009

Kidney update: A lesson in patience

I think patience is a lot easier when you're in denial (or maybe it can't be called patience when its denial...ahh, deep). Once you realize that things can be different, that zen goes out the window and you want change NOW. I always thought I was the most patient person in the world, but as it turns out, I'm miles from that self-proclamation...(the realization is not only true for this situation, but being the mother of a 3 year old really drives that fact home!) We continue to practice (and I say "practice" because we've not got this mastered) patience as we wait for the right person, situation, kidney to come along.

No matching tests have taken place yet, but we remain hopeful. The decision to pursue donation is a big one. It's so very inconvenient, voluntary, scary, intimidating. You don't know what to really expect, how things will turn out, how you'll feel, if you'll get the support you need....honestly, the concerns are endless. I can completely and utterly understand the apprehensions, and they are all very legitimate. I've not donated a kidney (yet) so I can't even comprehend the sacrifice one would have to make to give a gift like this. But what I can speak to, first hand, is the result.


The result of Cynthia giving Darren one of her kidneys changed our lives. Even though it lasted only two short years, it gave Darren two more years of life. His spirit came back, his energy, his outlook, his hope, his inspiration, his passion...all the things that fade when you don't feel well. I also honestly think that we wouldn't have a daughter if it weren't for Cynthia's kidney. Even though we had our daughter once Darren was back on dialysis, we knew that there was hope he would get another chance, just like before. And we also learned that life can't stop for the "what ifs."


Now, please don't misunderstand my soliloquy. I am not trying to guilt anyone into anything, because honestly, the best situation for everyone is if it's the right situation for everyone. I'm just trying to be open and honest, and say the things that are on my heart...after all, this is my new shiny blog. ;)

Monday, May 11, 2009

The Small Print

I am actually getting this blog off the ground! It's like the Christmas card that comes in July (trust me, I've considered that). I've been teasing for months that I was going to start a blog to keep information all in one place and allow people to NOT have their in-boxes filled with emails from me. So... here we go!

I plan to use this blog to keep family and friends informed of our journey in finding Darren a kidney, to include information on the testing process and to generally be a place of community and support for Darren. Thinking of the internet as "community" seems odd, but with friends living in far away places and with the busyness of our everyday lives, this is a way that we can reach and inform you... and you can reach back.


Before I get into my first official and informative post, I would like to include a disclaimer.... I am a smart woman, but somehow missed the "spelling" gene (as my family and Cynthia can attest). So, there is a high probability that you will encounter words that even spell check couldn't decipher. My tip is to just sound them out, and don't judge. ;) Also, I am not a writer. I can write, but it comes with great effort and many rewrites. So I will do my best to be timely with my posts, but know that much contemplation and many drafts may hold up my good intentions.


I will spontaneously send out emails to remind you to check the blog, but you can sign up as a "follower" in the right navigation area if you'd like to keep track. Also feel free to send this blog to others you think may be interested. Keep a look out for my next postings... I'll be putting up a video soon of the Patillo clan from a fundraiser we're involved in called the Breakfast of Hope for the Northwest Kidney Center, also a general update on where things are with the testing process for living donors.

Whew, I finally get to check this off my list (now I need to start my Christmas card for 09).