Happy New Year! The Year!

This is the year. This is when it will all change. Not many people with a chronic illness at the level of mine get a reset on their health. A new beginning. From every day filled with this sickness to so much health I will have no idea what to do with myself. It is an exciting prospect and I can't wait to share it with those I love, those who have been around and involved in all the intimate details of this disease, especially Renee and the kids and my family who have been there since diagnosis day 30 years ago and my first time getting sick midway through my 8th grade year, close to 22 years ago. Back when being 36 with CF was  not really a thing. And 36 with CF and a family? Hah. It is amazing what the love of the most beautiful woman and 2 incredible children can do. When someone who has a choice chooses you, illness and all. I love you, Renee. I am alive today because of you.  

It has been a long slow goodbye to these lungs, yet looking back through all the suffering I would not change a thing. I would not be who I am had I not lived with these immense struggles...and victories. This is the only life I have known and it has been grand. It has been character building to say the least and I like who I am, who I have become, because of what I have been through.

So ready to start this new chapter. Hell, might as well just consider it starting a whole new book. Ready to slam the cover closed on the old one. I often say "I can't remember the last time I could run without a care in the world." I am ready to start saying "When was the last time I COULDN'T run?" That's it. That's the first line right there...

Hold on while I cough for a second...or 5 minutes.

What will a life without coughing be like? I can only imagine as it's the only life I've known these past 20 or so years since first getting sick. Practically every morning starts with a huge fit of coughing, the lungs clearing themselves of the mucus that has accumulated overnight. It is a violent act. A painful act. A now rib breaking act, haha. Hey, I can laugh now that I am mostly healed! At times it is scary, many times I am unable to catch my breath and feel close to passing out. What a lovely way to start the day, eh? I wake up and mentally prepare myself for the impending onslaught. The first 5-10 minutes I lay in bed, hoping this may be one of the rare mornings where I don't cough. Then I get up and start moving and feel it coming on. I try to fight it off, breathe slowly and deeply, move slowly. It keeps getting closer. After about 5 minutes I duck into the bathroom, accepting that it is time. Violent coughing, snot running from my nose, my eyes pouring fluid. I grab onto the side of the sink for support and just lay into it. Lightheadedness begins and I just try to find some oxygen between the coughs, just enough to stay upright. Around 5 minutes later it is over and I can breathe the breaths that lungs functioning at 30% give me. Following that fun it is another 20 minutes or so of just sitting and recuperating, clearing out the remaining crap that lingers in the lungs. 

This is the life of someone with CF. Of someone close to transplant. The life I never really tell about because it is pretty gross, haha. But this life will be over soon. All I want for Christmas is a new set of lungs. Are you listening Santa?

Steve

Update time!

Hello all, Steve here again! What a beautiful Sunday morning it is today! Starting the day slowly so figured I'd send out a little update. Continue to wait for the call. Health is holding steady right now, am up early during the week to take the kids to school, up in the afternoon to pick them up, take them to jiu jitsu, etc. Basically back to my normal duties as dad :) Now if I can just get back into the flow of doing laundry, dishes, and other household chores I think Renee would be super impressed, haha. 

These are happy, although a bit nerve wracking, days in the Lilly house. The kids are so excited for daddy to get new lungs. Overheard Anna telling Liam that when I get them I will be able to play tag, run around, jump in the trampoline, have so much fun with them. Fun I am unable to have in my current state. It made me so happy to hear the joy this new life will bring to the kids. They need it, my family needs it, Renee needs it, I need it!

So, the transplant. I figured I had several months to prepare, maybe even a year. That all changed when I received an email this week from my nurse coordinator up at USC. Am looking into double listing with Stanford, so sent her an email asking her to send my chart up north. She replied that it wouldn't be a problem. It was what she wrote after that put me into a little bit of shock, haha. She basically said that they have already received a lot of match offers for me, but that they are just waiting for that perfect set. Whoa. She is leaving the program at USC on Dec. 3rd and is hoping I get the call before she moves on. Whoa again. Of course, the wait could still end up being months, but to know that call has already been close a few times already is intense. 

So we continue to wait, continue to be awed by the love and generosity from all of you! Please keep on believing in the Steve ;)

Love, 

Steve Lilly

Here is a pic of Liam and I from yesterday, taken by my sister! The fam and I went up to Anthony's(Jessica's man) Folk Revival Festival in Long Beach. What an amazing success it was! Seriously! Liam loved it, was rocking out to all the music, jamming on his craft banjo, stomping his foot along to the beat(I call it the Strummer stomp, after the great Joe) taking bows after every song. It was so great! Even got his sister to join in towards the end. What a great family day!

A busted rib ain't gonna stop me...

...from making it up north to visit the Searles family! Yes, several days ago I woke up, began to cough, and broke a rib. Definitely one of the most painful moments in my life. A trip to the ER, a ton of pain meds, and an X-ray and CT scan later, it was confirmed. Non-displaced fracture of the 6th rib on my left side. A rib break and CF is one of natures cruelest jokes ever. Yeah, tell me not to cough, haha. So went home and tried to get comfortable, didn't really happen. Still painful to cough, but at least I can move and sit in a car. 

And sit in a car I did. We had planned a trip up north to visit family and I was devastated I wasn't going to be able to make it after this setback. So Friday morning comes and lucky for me Renee slept through her 4am departure time. Since I woke up at 7 and they were still home I had the opportunity to decide to tough it out and so happy I did. I love it up here so much, always go home feeling so recharged. We love it so much up here that we are actually considering a move. 

So the 7 hour car ride was a little intense. Waiting for each bump in the road to cause excruciating pain...and if you've ever driven with Renee you know there are a few extra bumps thrown in for good measure, all with an evil little smile on her face ;) 

Got here late Friday afternoon and took it easy. Yesterday we were able to get out with Jeff and Missy and check out some of the areas where we may be able to find a home, mainly driving through Livermore and Pleasanton. As is the market we barely saw a single for sale/rent sign. May make things tough, eh? After our little adult time it was time to grab the kids for a little outing, a drive up to the old little steam train at the top of Grizzly Peak in Berkely. The good pics of the kids and the train are on the good camera, but we did stop at one view point along the road for a couple pics, what a beautiful day!

And yes, we even got caught taking the picture by Missy. Sneaky...

So now it's Sunday morning, Renee is out with her sister at the Alameda swap meet, and I am just rubbing the sleep from my eyes. Oh how I, how we, needed this!

Still waiting for the call, obviously, and even with this rib break I am keeping it all positive. I have had a lot of tests thrown my way in life and this is just one more...and I will pass it. 

Thanks all for your continued support through this journey to a new life, much love. 

Steve

Tick, tock...

Copy and pasted from the gofundme site, because well, it's so nice why type it twice? 

Hello all, Steve here again! Thank you for your continued support! So great to check in day by day. Still as humbled now as I was from the get go. 

Nothing really new to report, just trying to build my strength both emotionally and physically while awaiting that call. THE call! Still coming to terms with the new reality where every time my phone rings in my pocket that it may be time. It is an intense way to live, but knowing the support I have here makes it much more tolerable. Thank you for having my back...er, lungs. Ha!

Hope all is well in your lives, can't wait to celebrate with you all once all is said and done!

Much love and respect, 

Steve Lilly 

Out of the hospital, back to reality!

Posted this on the gofundme page, figured I'd post it here, too!

gofundme.com/believeinthesteve

Hello all my heroes! Steve here, finally getting a chance to check in. Wow, what an overwhelming and humbling experience this has been so far. A couple days out of the hospital and just starting to return to normal life, well, as normal as it gets when one is waiting for a new set of lungs. 

I search and search for the appropriate words and they just never seem to be enough. Thank you. Thank you for giving. Thank you for your prayers, your positive vibes. Thank you for supporting my family in this time of uncertainty. 

I promise here and now that everything raised will be used appropriately and in the manner the gift was intended. I know how hard you all work for what you have and would never, will never, take advantage of everyone's generosity. 

Getting word yesterday that I was officially listed was a shot to the gut. Up until now none of this truly seemed real. Knowing now that the call could come at any moment is quite unnerving. In a good way. I need this. For myself, for my family, for all of you so we can have the biggest f**king, pardon my French, party when all is said and done! I can't wait!

Much love and respect to all of you. My eyes have been opened. Prior to all this I focused on the negative far too often. People that park in handicap spots without a placard, horrible drivers trying to take my life sooner rather than later, and other dregs of society. No more. You all have made me want to focus on the positive with your kindness. Yeah, I may still lose it once in awhile on those people mentioned above when I stumble upon them, but maybe, hopefully, I'll do it with a smile from now on :)

Going, going...

...HOME! It's been a long haul this time, but the end is nigh! Tonight will be spent in my own bed for the first time in about a month. Thanks for all the support throughout this little ordeal, now to look toward the future, focus on the transplant! Let's do this!