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.