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Glory Days.

Every Monday night, Mitchell and his family are most likely hanging out at their local Glory Days restaurant for burger night.

September 23rd was no different.

glory days

His folks invited me to stop by and I was so happy to see them after what felt like a lifetime. About once a week I check in via phone with Mitchell’s mom, my direct line to keeping tabs on our resilient fighter. It was the perfect opportunity to present them with a check of the money we raised from Save Mitchell t-shirts + some individual donations.

He had a fistula implanted a few months ago. I thought it was some type of contraption that was inserted into his arm, but I learned that I was wrong. A fistula isn’t an object, it’s a procedure. In short, his veins are configured to receive dialysis (input and output). A passage is made between vessels. He has several little holes in his arm (covered by bandages in this photo) that have to be pierced/reopened every time he receives dialysis treatments. His mom encouraged me to put my fingers over where the fistula was created (near his wrist) and I literally gasped outloud. It feels like something electrical is inside of him, buzzing. But it is actually just the blood in his veins going super fast.

This “technology” allowed him to get rid of his central line (which can lead to infections and also cannot get wet). If he wanted to, Mitchell could even go in a swimming pool. Unfortunately it was too late in the summer season for him to enjoy that favorite pastime by the time everything healed; it needed 8+ weeks to heal before it could be used. Slowly but surely, Mitchell and his Mom are getting the hang of it. As always, he is being a trooper in the process.

fistula

At the present time, there are no talks of another transplant. Right now the focus is on keeping his health as steady as possible. No ER visits, no radical drops or highs in critical medical vitals, no infections. Right now the focus is to get his dialysis treatments down pat, so they can stop making 30+ mile trips to the dialysis clinic on a daily basis and simply do the life-saving process at home. The entire process lasts about 7-8 hours from the time they leave the house in the morning, to the time they finish dialysis and head home.

clinic

Continued thanks to all of the support, love and prayers from near and far. If you’d like to make a donation to help fund a dialysis clinic tank of gas for one week, you can contribute $66.00 through the PayPal account here: https://savemitchell.com/donate-a-dollar-2/

Much love,
Mary Beth

Glory days yeah goin back
Glory days aw he ain’t never had
Glory days, glory days

Now I think I’m going down to the well tonight
and I’m going to drink till I get my fill
And I hope when I get old I don’t sit around thinking about it
but I probably will
Yeah, just sitting back trying to recapture
a little of the glory of, well time slips away
and leaves you with nothing mister but
boring stories of glory days

-Bruce Springsteen

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Dialysis or bust.

The face of dialysis.

The face of hope.

The face of strength.

The face of Mitchell Lyne.

This week Mitchell began hemodialysis at home, thanks to his devote Mother who has been training for weeks on how to perform the treatments. For the last month or more, they had been traveling to the dialysis clinic.

SM

Meanwhile, we are finishing up a fundraising effort for Save Mitchell t-shirts. We redesigned them so if you already own the original version, now is your chance to own a new version AND give back to our hero. $15.00 from each sales goes to help pay for his medical bills. Visit the website for more information, this campaign ends on June 20, 2013: http://www.bonfirefunds.com/fund/save-mitchell

Thanks for everyone’s continued support & prayers. Please follow along on Save Mitchell’s Facebook for daily updates.

ML

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Happy birthday Mitchell.

Today is Mitchell’s birthday. He’s been alive for 20 meaningful years. He’s been fighting for his life for the last 12 of those years.

This blog has been neglected since December as the Facebook page has become the primary portal for Save Mitchell weekly updates, but today it felt fitting to post a thoughtful update here.

The winter wasn’t easy. Since the New Year, the road to a new life with a new kidney took a major detour. Mitchell’s 3rd transplanted organ that he received in August 2012 was put in jeopardy due to a variety of medical setbacks. He was admitted to the hospital for over two weeks in January, and during that time period, contracted the CMV virus which can be fatal. To nurse him back to health, the kidney was compromised because anti-rejection medications were lowered in order to treat the CMV virus. Because of everything he’s been through over the years, his immune system isn’t strong so is susceptible to getting sick pretty easily.

On April 10th, news broke that the kidney was officially lost. Fifteen days later, on April 25th, he started dialysis in order to keep him alive.

Dialysis is a double-edge sword for people who are in end stage renal failure. It’s significantly lowers the quality of life as we know it. People spend hours & hours hooked up to machines going through the monotonous routine, then the next day they recover and by the time they start to feel a bit better, they go through the process all over again. Some people receive treatments every single day, which will be Mitchell’s future beginning in the next few months once a permanent Fistula is implanted in his arm. On the other hand, dialysis is literally keeping him with us and that is arguably the most beautiful gift we could ever ask for. Life.

He wants to keep living. Everyone who knows Mitchell wants him to keep living. People who don’t personally know Mitchell want him to keep living. He has touched people through his resiliency, courage and quiet strength. It is safe to say that anyone who crosses his path could learn something and be inspired to keep fighting whatever battle faces them.

Today, we celebrate him. The person who chooses every single day to open his eyes. To get dressed. To go through the motions of taking dozens of medical pills, fighting through physical pain, and believing that someday, somehow, things will get better.

Can he have a fourth kidney transplant? Time will tell, but that isn’t on the radar right now. Will he have the opportunity to be a part of research, stem cell developments, or medical miracles in America or elsewhere? Time will tell, but that is on the back burner right now.

What we do know for sure, right now, is that Love Wins.

His Mother has never left his side, as the unofficial nurse with an honorary RN degree, and sacrifices working/income…much less a good night’s sleep…to care for her son day and night. Mitchell’s Father, siblings, grandparents, and extended family and  friends support him, encourage him, and hold onto hope.

The medical bills continue to pile up at warp speed, expensive gas to travel round trip on the 50 mile drive for dialysis clinic visits 3 times a week for 4 hours at a time, a neglected house that needs various maintenance work but time and money has kept that from becoming a reality. The list of burdens goes on and on and on.

But ya know what? Their incredible faith is what keeps them hanging on. Some days are brighter than others, but behind it all is a deep belief, a steadfast conviction that everything will be OK.

Happy birthday Buddy.

Much love,

Mary Beth

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Hope floats.

This week has been quite a whirlwind. Mitchell came home on Tuesday, exactly one week after transplant surgery, which was wonderful! His blood pressure was coming down, which meant two of his six blood pressure medications could be discontinued. Things were looking up and we were doing the backstroke in a bath of good news.

I finally heard a sense of calmness in Mrs. Lyne’s voice over the phone on Thursday after spending the entire day in the transplant clinic, and she even admitted with an exacerbated tone, “I’ve been surviving on adrenaline. Now that we’re home, I’m crashing and incredibly tired.” You may remember that she had a terrible car accident a few months ago and has been suffering from pain in her arm and neck. Mrs. Lyne’s physical therapy came to a complete halt two weeks ago when Mitchell went into surgery mode — so between that stopping, plus sleeping on hospital sofas and now on her own couch next to her sick son…her body has taken a beating.

She went on to talk about the kitchen floors needing to be cleaned and I stopped her, “The floors can wait. Get some rest.” She reported that things seemed to be moving along in the right direction, besides creatinine levels being a bit high, to which they’d adjust his anti-rejection meds to help fix that. He wouldn’t need to report back to clinic until another four days on Monday.

We hung up the phone and not even a few hours went by before she rang again. The news wasn’t good. It turns out his blood pressure going down wasn’t necessarily a good thing, per se. You see, it could actually be a sign of the kidney being in distress. He’d need to return to clinic the very next day, Friday.

Friday comes and goes and the takeaway isn’t what we wanted to hear. His high levels of creatinine and low blood pressure…adds up to a biopsy appointment scheduled for Monday afternoon. Unless, in the meantime, the levels normalize.

That means he’ll be admitted back into the hospital for at least 24 hours while they keep an eye on him and the procedure’s wound, that nothing goes awry from sticking a needle in his recycled kidney.

I went by their home today to say hello & drop off a few goodies, including a check for $750 thanks to the third batch of SAVE MITCHELL t-shirts being sold. I also had a set of coffee table books made for him & Jessica as a keepsake; Facebook and blogs stock full of digital photos are lovely but there is something to be said for tangible memories.

When I arrived he was asleep on the recliner chair, faithfully wearing his SAVE MITCHELL t-shirt; evidently the blood pressure meds make you extremely tired. The Yankees were on TV, of course, his favorite baseball team. Beside him was a gigantic organizer of pills. I couldn’t exactly count how many were in each slot, but I eyeballed at least 15 or even 20.

He currently has SEVEN battle wounds that are healing — from his transplant surgery, dialysis cath removal, nephrectomy, central line in his neck, and on and on. I imagine his torso looks like he was attacked in a back alley from criminals. Without fail, Mitchell’s quirky sense of humor managed to make me laugh out loud and I almost fell off the couch. His Mom explained, “In the past, when we’ve been at the beach and people ask, ‘Wow what are those scars from?!?’ Mitchell tells them they’re from a shark attack.”

The poor guy has been through more than many of us will experience in our entire lifetime by the age of nineteen years old. All he wants to do is live. Just breathe, and live, and laugh. I wish that for him.

But for now, he’ll continue to fight for his life, defy odds, keep doctors, surgeons and nurses on their toes to figure out why and the heck his body rejects kidneys time and time again. And we’ll continue to rally around him and his unbreakable family.

Thank you so much for the continued support and for always believing. Right now it’s time to  swim, not sink. It’s time for a miracle. Let’s keep Mitchell and his family afloat by wrapping them up in a life vest of hope.

Much love,

Mary Beth

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