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!

So my amazing sis...

My amazing sister, Jessica, set up this site last night while hanging out here in my room. To wake up this morning and see what I saw has me truly humbled, speechless. 

Please feel free to spread the word and make me cry more tears of joy. They are way better than the other tears shed recently...

http://www.gofundme.com/Believeinthesteve

Back to the beach...

Have gotten done what needs to be done here at Keck USC Hospital. All the testing went as I expected and although we are waiting for the official word, based on what the doc's have said there seems to be no problem activating me on the list. Once that happens the wait truly begins! 

Plans had me going HOME a couple days ago, but a last minute test had me staying one more night here. Thank goodness I did, because around 9pm that night my chest tightened, pulse raced at around 150 beats per minute for half an hour, and my oxygen levels dropped to 89%. Another bump in the road that has delayed that trip home. No one is sure what happened, but one thought is that maybe some sputum loosened up and blocked up the lungs. So here I sit, another sleepy morning after another sleepless night, sore, exhausted.

I made the request to be transferred back to Hoag yesterday and after some coordinating that will be happening today! So although I won't be in my own bed at least I will be close to family, so visits can happen daily with the kids and Renee and mom and dad and Judy and sis and family and friends and so forth and so on! 

Hoping to now be home and in my own bed in around a week or so. Please?

Much love, 

Steve

A couple tweaks...

Been digging around the settings and made a couple changes that should make it easier for everyone. Have added the ability to subscribe to the blog using your email address so you are notified in your inbox each time a new post is made. Look for that option on the right hand side of the page. Also, comments are now open to everyone. No need to make an account, login, etc. just select the appropriate option from the drop down menu in the comment section.

One other feature I am excited to add is the opportunity for my wife to be able to come on and author some posts, let her share her side in all of this. She is my best friend, my rock, my strength when I have none, the one who has been and will be sharing the most intimate moments of this journey with me.

Your new contributor:

Hope the changes I have made work out for the best!

Testing should resume tomorrow, will update as necessary. Hope everyone had a wonderful weekend!

Steve

The gist...

The time for my lung transplant has come. Straight to the point, eh? No real way to sugarcoat it. Figured what better time to start a blog, as well. I went through the testing and was approved a couple years ago here at USC University Hospital, but due to the fact I had held a steady baseline in terms of lung function for several years, I was allowed an exception, allowed to put it on hold until it was deemed necessary. 

Well? Necessary. Have been on iv's almost 8 weeks with nary a bit of improvement. In the last 10 days there have been two bronchoscopies done, both times seeing quite a bit of "junk" removed. So here I sit in L.A. after being transferred from Hoag in Newport yesterday. Got a nice view out of the back of the ambulance on the way up:

Renee swears one of the ambulance tech's was farting the entire way here. I smelled nothing, thank god. There was some more comedy as they loaded me into the back and smacked my head on the top of the door frame. Really, guys?

Have some tests that need updating since my last clinic visit here and it was decided it would be better to have it done in house where all the other fun will be happening once "the call" comes. 

Edit: wanted to throw this in here somewhere as it seems this info was originally left out of the post. Although I have been approved for transplant previously, after these tests are done there is still a chance they could remove me from the program. Issues with resistance to medications, results from tests not being satisfactory, etc. will all play into the decision the commitee makes. They will be meeting this coming Wednesday. I am not thinking of any other possible outcome, but wanted all of this out there.

Been mellow so far, with today just consisting of a 6 minute walk to track my pulse rate and oxygen levels, on the headphones was "The Masterplan" by Oasis:

Yes, even had an audience of overflow lab patients. Worst cheering section ever. Had Renee as official photog and disher of the high fives, though! Thanks, baby!

Also on tap was the ABG aka the always enjoyable arterial blood gas. As it seems to go for me, it took 2 tries to get a good sample. Decided to skip the pic of a needle being jabbed into the middle of my wrist, sorry. 

Trying to settle in here, get a feel for the place. Renee has been with me the last couple nights, at Hoag and last night here at USC. It has made all of this bearable. A big thank you to the family for watching our amazing children the last couple days so we could have this time together. No greater comfort when waking up throughout the night, full of panic/fear, and having her right there next to me. Tonight she had to go home and it is too quiet here. 

Such a great visit from family today, too. Sis and niece Abbey, mom, dad, Judy, LIAM yeah buddy, and brother in law Jeff. Can't wait until my baby girl makes it up, she is going to get the biggest kiss and hug ever!

Been carrying the heart and guitar pick awhile now for good luck. Today was gifted the little "Believe" piece by Judy. The collection grows...

Until next time...

Are you a Believer...a Stever Believer?

Yes, believe in the Steve...
…that’s what I am calling this. Stay tuned for all the updates on what is going on, join up for the ride of a lifetime, for a new lifetime.