October 28, 2008 |
| The Scott Tyra Journey |
 |
|
Scott Tyra, Maura Murray, Russell Thedford
|
Out of all the great memories of our 35th reunion, and there were many, the most meaningful to me was talking to Scott Tyra. Scott and his wife traveled from Arizona to make the reunion. The journey in distance was not as big a deal as the journey of Scott's health. Scott is awaiting a double lung transplant. He told me that this was his last venture out until he could get the transplant. That really hit me. Scott was very courageous to come so far in his condition. I was so thrilled to hear his story, how much he enjoyed the reunion and most of all how much he enjoyed seeing his classmates. I have asked Scott to keep us informed and he graciously agreed to let us publicize his progress toward his transplant and beyond. As you read below you can seen that he has two huge journeys before him. One is to get the transplant and the second is the other side of the transplant. Keep checking back for more updates. Scott asks for you prayer and support. Forrest Scott's Story "Sorry for the delay in getting back to you. Unfortunately, this is a long, drawn-out process. Basically, here's what's going on. Feel free to put whatever you think is appropriate on the website. Basically, after life-long bouts of asthma and other respiratory problems (I won't bother you with the long names, but feel free to call Scott Dycus- he can tell you), my respiratory system is slowly but surely failing. (Actually, some of my healthiest years were in high school- thanks, guys). Currently, my lungs function at about 25% of the level they would if they were healthy. The only possible "cure" at this point is a double lung transplant (both lungs have chronic severe infections). After several months of tests to determine there isn't anything else wrong with me (there isn't), I've been added to the "active" transplant list at UCLA in Los Angeles. I'm toward the bottom of the list- I'm among the healthier of the "sick people." But as time goes by and I get sicker, which I will, I'll move closer to the top of the list. At some point, a donor match (my blood type, my size, etc.) will come up, I'll be next on the list, and the phone will ring. I'll have six hours to get there for surgery. The surgery lasts 10-15 hours, I'm in the hospital for 2-3 weeks, and I stay there for follow-up treatment and therapy for another couple of months. It isn't risk free- there's about a 6% chance I won't survive the surgery, about a 15% chance I don't survive the first year after (due to organ rejection, infection, other bad stuff), and about a 35% chance I don't survive 5 years. But without the surgery, probably sometime in the next 3-8 years my lungs will shut down, and that will be that. So as a family we've decided to go forward with the surgery, which means that for now we just sit and wait. We're setting up an E-mail distribution list, so we can hit a button and everyone will get the "if you receive this E-mail I'm on the operating table..." message. I think we can just add the class website to that list, plus anyone else who'd like to be on there. In the meantime, we appreciate everyone's prayers and concern, and we'll see everyone again soon. Scott "
|
I was so glad to see you at the reunion and have been thinking of you and your family ever since. When I saw that you were there and the effort that you put into getting there, it just made me love you that much more. You have always had a special place in my heart. I want you to know that you are an inspiration to all of us.
My prayers are with you always.
See you soon!!!
Love ya,
Linda May
Linda Hallman
Hi Scott and Jodi,
Just a note to say that I am thinking about you guys. Hope you have a very Merry Christmas and great New Year. My familys thought and prayers are with you guys.
Russell
I pray that you receive the call you need in this coming year. Life is precious and you are living proof that we all need to cherish each and every moment. Have a wonderful and Blessed Christmas and a happy and hopefully, healthy, New Year.
Barbara Ward-Wilson
Jodi and I continue to meet some wonderful people on the first part of this journey, including transplant recipients and members of donor families. We're staying as active as we can, and continuing to add to the list of things we're going to do "when you get your new lungs." There are still a lot more good days than bad days.
Again, Merry Christmas and Happy New Year to all of you.
The good news is that now that I'm diabetic I'm officially sicker, so my score at UCLA went up, so I moved closer to the top of the transplant list. We still think it's about a year away, but it is still coming.
Forrest suggested that I share a couple of our "when you get your new lungs" plans. We sort of thought of this after watching the movie "The Bucket List" (great movie), and after noticing the number of times we were saying, "When you (or I) get your (my) new lungs, we're going to ___." So, we're keeping a list- an I'm-not-planning-on-kicking-the-bucket list. It includes, off the top of my head:
* Go to New Zealand
* Run a marathon
* Clean the garage (hey, they're not all cool...)
* Climb a fourteener in Colorado
* Ski again
* Learn to scuba dive
* Take all three dogs for a walk at the same time
* Take a train trip across Canada
The list keeps growing. Feel free to make suggestions of your own.
Talk to you all again soon. God bless.
May God continue to bless you.
Forrest
One small victory- I don't have sleep apnea. The UCLA doctors were concerned that my breathing might be stopping during sleep, which is bad for obvious reasons, plus it contributes to fatigue. But after a night spent at the Sleep Center with a camera pointed at me and about a gazillion monitors hooked up to various parts of my body (it's awesome, you should try it), it was determined that I do breathe all night. Not all that well. sometimes, and definitely not well without oxygen, but I do breathe. So I don't have to start sleeping with a mask and a loud machine, which Jodi is definitely thankful for.
I go back to UCLA early next month- I'll write again after that. Until then, take care- and since I have Oklahoma winning in my bracket pool at work, Go Sooners!
Looking forward to seeing you next time!!!!
Love,
Joyce
Just joined classmates, looked at previous reuinon pics and then notes about you. Checked out Moore page and heard about your battles. Sorry that you are having to go through what you are but I know a loving God who has you in His hands so I know all will go well for you. It was good to see everyone in the pics and hope to see more in the future and to get to hopefully see some of the "old group" again soon. Keep your head high and my prayers are with you.
The sickness was a two-day bout with something. Actually, all those symptoms of swine flu they keep rattling off on the news is pretty much what I had, which was a little disconcerting. But since no one from UCLA has called in a panic, and since I seem to be largely over it, I'm pretty sure I'm "swineless."
It is true that I've become a little bit of a hypochondriac. When you're chronically ill, you start to obsess about every little thing- the pain in your foot, the hacking cough (is it worse than yesterday?), the little bit of dizziness. You wonder what everything means, you think about it when you really should be thinking about other things. Actually, that will be one of the joys of the surgery- getting to a place where I'm not spending all day and all night thinking about my physical condition.
Enough for now. I'll have some time to write again, since the next UCLA appointment isn't until late July (unless...)
I'm thinking of you all. See you soon.
It's hot enough out here to get in the pool, so I can exercise a little (it's not aerobic enough to kill me). And we got a Wii (you should get one, they're awesome), along with a Wii Fit DVD. There are some balancing exercises I can do on there, and some yoga. Yes, yoga. I do breathing poses, and one called "reach for the sky" or something like that. We call it the "move the Wii board over or you'll stick your hands in the ceiling fan and that really hurts" pose. I want functioning legs after the surgery, so I'm staying "in shape" as best I can.
Some other sort-of-good news- the insulin pump was delivered, so soon the 5 shots a day will go away. Not going to miss those.
And one more piece of really good news- tomorrow is mine and Jodi's 25th anniversary. It's been all wonderful. It probably helps that I still have a little bit of a crush on her.
More lung function tests early next month, so I'll write again before the reunion. Take care, everybody.
Keep the faith on the transplant. You have a tremendous number of people praying for you.
Barbara Ward-Wilson
I forgot to say, maybe on your what to do with the new lung list, you could add a trip to Paris? That would be cool for us.
Maura
Dear Scotty, Just wanted to wish you a happy 4th and here's hoping you are getting closer than ever on those new lungs. I hope you are not feeling too bad and I hope Jodie is holding up as well. My prayers for you always. Love, Janie
I know you want to wish me happy birthday today b/c I am older than you. Hope you had a good 4th. Take care and tell Jodi and Ben HI! Will see you next month. Scott
I just did some lung function testing- more about that later. For now, we hope everyone had a happy Fourth. We did (with major napping on the fifth). I will wish a happy birthday to the much-older-than-me Dr. Dycus. And also, everyone please wish Happy Birthday to Janie.
Talk to you soon.
I can't make it this year. and I'll miss all of you. In some ways I'm a lot like last year- my lung function is about the same. If you looked closely you'd notice the tubing for the insulin pump (it's working well). The main difference is that I don't have the energy I had last year. I'm definitely slowing down. I wouldn't be working the room as much this year- I'd be sitting in one place and hoping the room came to me.
So, in one sense I still need to get sicker to move up the transplant list. It's not that I'm not sick enough to have the surgery, though. If lungs were available, in my doctor's opinion I could have the surgery today. I'm just not sick enough to be at the top of the list.
I'm one of about 100,000 in the U.S. on a waiting list for some kind of transplant (lungs, heart, kidney, liver, etc.). About 6,000 of us won't make it- we won't live long enough to get off the waiting list.
So here's a request- if you're not an organ donor, please think about becoming one. If you can encourage others to become one, please do. In our family, we've checked off that box on our driver's licenses for years, without much of a second thought (except to feel bad for the poor soul who gets anything from me). Most organ donor volunteers are never called on. But those who do donate are literally lifesavers. I've met organ recipients in the past year, and I've met families who made decisions, sometimes under terrible circumstances, to donate organs that saved lives. Without fail, they say they are glad they did it, and that they'd do it again.
In my dream world, everyone would be an organ donor and nobody would ever need an organ donated. While we wait for the second to happen, I hope you'll think about the first.
OK, I'm done preaching. I'm back at UCLA the end of this month for more tests (strange fact- if you watched the crowds gathering at the UCLA hospital the day Michael Jackson died, then you saw exactly where we go every three months). I'll let you know if anything interesting happens. Meanwhile, party hard this weekend. We'll be thinking of you.
Scott
and yes I am still perturbed by our lack of graduation, but I suspect you are just jealous that you did not get a letter to the editor of the famous Moore Monitor published. The class of 74 reunion is tomorrow night and after much deliberation, I will be attending. I will send you the best pictures of the night. Take care!
Nuala
Karla- "wip wop"- now that's a new term to me. My son explained why you were getting all the noise on your post, but he lost me a couple of sentences in. Not to worry, I was able to read what you wrote, and it's much appreciated.
We were back at UCLA this week, and I'm slightly worse- my oxygen levels are down, I'm wheezing a little, and I have an increasingly productive cough. It's only slightly worse, though, and not enough to move me up the list. I'm pretty much on hold until my health takes a sharp downturn. For me in the past that's usually happened in the winter- I've had pneumonia in the December-February period at least half a dozen times. So I'll take my flu shots (including a swine flu shot- I'm in the first group to get them), and we'll wait to see what happens. Part of me wants to stay healthy, part of me wants to move the process along. But not too far along- that could get dangerous.
Best wishes to everybody, and thanks for keeping in touch. God Bless.
Do you have a Facebook page? If not, create one so you can visit my page and see loads of pictures of our reunion, my family, and grandkids! Hope all is will with you.
Love,
Nuala
We saw Scotty last month and he looked good. We could tell he was struggling but he never complained. We had a good time and we know he will do well. Have a good day Scott T.
We did have a great time with Scott and Shelley, and Charlie and Vickie Coulter. I wasn't complaining because it was Sunday morning brunch, and I knew I had an afternoon nap coming. What can I say? Life is good.
My lung function has slipped a little, but otherwise not much has changed. I continue on the list- as of late August I was #58- but I'm still going to have to deteriorate to move things along.
Do you remember when we were kids, and we'd hang around the kids who got chicken pox or the mumps so we'd get them too and get out of school for a week? Maybe I'll just find someone with the flu and hang out with them- you know, just to move the process along.
I'll let you know how it goes. Until then, take care, all.
Jere
I'm at the tail end of a cold that refuses to go away (a little worrying). The only newsworthy thing, I guess, is that I got my H1N1 vaccination. My oxygen tank came in handy- I got pulled out of the 3-hour line and put in the 20-minute line. No side effects yet.
My son has laid down the law on Thanksgiving- forget the diabetes, we're not having a low-carb Thanksgiving dinner, so, in his words, "You'll just have to shoot up." I'm probably not the only diabetic in America who'll end saying "oh, what the heck" and loading up on insulin.
One more Thanksgiving treat- my baby brother Mike (some of you probably met him- he was 5 the year we graduated) is bringing his family out to spend Thanksgiving here. He's Master Sgt. Mike Tyra, and he's done a tour in Iraq and a tour in Afghanistan. Having him here with us will be a special treat.
If I don't talk to you before then, have a wonderful turkey day, everyone. God bless you all.
I hope things are moving forward for you. My Christmas wish is you get the lungs you need and your life improves with the Grace of God and the love of your classmates.
Barbara
Merry Christmas and a Happy New Year.
Hi, and Merry Christmas to everyone. I'm reading about blizzard warnings in Oklahoma, and I hope everyone is staying warm. No snow (which we miss) or sleet (which we don't) out here- just wind. We're done shopping, and I actually have everything wrapped before Christmas Eve services (better than the year I finished at 4 AM on Christmas morning- after a 3 AM trip to 7/11 for more tape).
We had our end-of-year trip to UCLA, and I'm finishing the year almost where I began- about 25-30% lung function, on oxygen, able to walk around, third from the bottom of the transplant list. At UCLA, there's no seniority to the process- sickest and most in need goes first. I really expected to be further down the road by now, and the fact that I'm not can be very frustrating- for me and for Jodi- some days. But we are where we are. And as long as other people need help more immediately, we can wait. And when we think that our complaint is that I'm doing OK, we get a little more perspective (OK, I do- Jodi always has a handle on what's going on).
So, to everyone- I really enjoy hearing from everyone, so thanks for writing. I apologize for boring you, but I promise to try and be interesting just as soon as I can. Tonight at church we'll sit next to the woman with the bad cold, to see if we can move the process along...
OK, probably not. Merry Christmas again, and God bless.
The odd thing about this is that it leaves us spending a longer time in limbo. I'm not moving up the transplant list, and seniority doesn't count. We really thought that I would be much sicker by now. I'm glad that hasn't happened, but it still leaves all the drama in the future. Some days that's annoying; most days we don't really think about it. We still just try to take what the day brings.
I love it when someone posts on here, and I'll probably start responding to everyone specifically while I wait for more medical news. Thanks to all for keeping in touch. Maybe all those prayers are helping, because I can tell you, things could definitely be worse.
Well, I tried to help you out! I flew to El Paso four weeks ago, visited Las Cruces on the final day of the week and then flew home on Thursday. By Saturday afternoon, I had 103.7 temp, a raging case of H1N1 that lasted three weeks (17 days without a voice!) and 9 pounds off me. To say the least, it is not something I would recommend.
I'm glad to hear you have stabilized, but at the same time, I am sorry it is delaying your new lungs. Hang in there, keep your spirits up and know that all your classmates are saying prayers.
Yikes! 103.7 is scary high for a temperature. I'm glad you're on the back end of that. I've also done the flu diet.
You get back to work and people say, "You've lost weight," and you're thinking that laying on the couch and eating nothing for two days will do that. There are more enjoyable ways to slim down.
RIP to DeWayne. I do remember DeWayne and Woody. They were a little more committed on the long hair front than some of the rest of us.
DeWayne's family will be in our thoughts and prayers.
Melissa Etheridge? Never saw her in concert. I'm sure it was good. Really wanted to come out for Jackson Browne. It has been a while since we saw him together. I saw where James Taylor and Carole King are going to be there about the same time. Would be great to be there for that, but alas we will be in the islands that week. I'm not sure Shelley knows any of them. Does Jodi? We will be there Oct 23 weekend with all the parrotheads so we will see you then. (We saw Scotty New Year's and bitter sweet he looked really good) Take care and we will see you soon. Tell all hello!!!!
I do remember DeWayne and can only say the world lost a wonderful man recently. The last time I saw him was years ago, and he still had a beautiful smile and winning outlook on life. Woody, please convey to his family that I send my heart-felt condolences.
Barbara Ward-Vinson