Happy Birthday Rose!
I came across this post in the City of Heroes Official Forums. I think it says it all.
| Happy Birthday to RoseVortex – Organ Donors Wanted #12044117 – 09/25/08 09:29 AM |
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Howdy Liberty-folks (Libertines?).
I wanted to wish Happy Birthday to RoseVortex (my wife) and make a request.
<Turns down the Humor Circuit to level 1>
She’s 34 today. I know you aren’t supposed to share a woman’s age, but it’s a big deal for her. She’s actually in the hospital (“Club Med”) this week getting an antibiotic “tune up”. It looks like she’ll be there right through her birthday (I’m posting this a few days early). In fact, it looks like her meds might be doing something odd to her haircolor……
For those who missed my last long and drawn out post (for *my* birthday) in April, my wife has a genetic disorder called Cystic Fibrosis (CF) for short. Don’t know what that is? http://en.wikipedia.org/wiki/Cystic_fibrosis has the details. In short, your body can’t break down the mucus it produces – as a result CF patients develop persistant (and very nasty) lung infections and have digestive and other issues. Once upon a time, this was a childhood disease and most patients didn’t survive out of their teens. As the years have gone by, the median life expectancy for CF patients has risen almost every year (I believe its up to 36 now).
RoseVortex has been chasing that revised life expectency number for a while now, along the way she got married (to this weird guy), had 2 kids, graduated college, and taught high school English for a few years. Along the way through the last 14 years got sort of geeky/gamergrrl-y (which still makes me wonder if that means I have been a “good” influence or a “bad” influence…..). She started playing City of Heroes with me in January 2006, and we are pretty much only on Liberty server, where we hang out on the SisterhoodFriends global channel (which has a bunch of folks from all over the place). Rose has 3 lvl 50 toons (which makes me look like a slacker since I only have the 1….I think I might have alt-itis). She’s even managed to get the Master of Statesman TF badge on her empath (which seemed like an impossible task with Yank Shillelagh the Suicidal Scrapper along…thanks for the stress Yank 
). We play mostly blueside, but both of us have a late 30′s baddie toon as well. She cheats and plays while I am at work…..
RoseV has been on the lung transplant list for about a year and a half. As of the last few days we are now up to #2 on the list at our transplant center. She has to have a double lung transplant because otherwise a “sick” lung would infect the “clean” one….otherwise I’d give her a lung in a heartbeat. Over the last 2 years we have sold our house and moved in with her Mom until after the transplant comes “someday”. At this point she’s on oxygen 24×7, so we don’t get out much. She is one of the toughest people I have ever met – she walked around with an undiagnosed pneumothorax (a collapsed lung) for a week last year saying she was “uncomfortable” – the living definition of the Willpower powerset I guess. Along the way we have kept our sense of humor (well, its gotten a bit on the dark side, but we are still laughing). Of course, if I make her laugh too hard I might pop another lung….its a delicate balancing act…
My birthday wish for Rose is not something I can buy. The Lung Store doesn’t seem to have a branch in our area.
The transplant lungs will come from someone we don’t even know. I don’t know that we will get a chance to say thank you to anyone.
My birthday request/wish for RoseVortex for all of you is this:
-If you don’t have any religious or moral objections (and I understand if you do) please go out and register as an organ donor. If you are in the US, go to http://www.organdonor.gov/donor/index.htm and find out how to register in your state (every state does it differently). According to http://www.unos.org/data/default.asp?displayType=usData there are 99,000 people on the waiting lists in the US right now. If you are outside the US, it looks like every country has their own way of handling registration, you’ll have to Google it.
-If you choose to register, make sure you discuss it with your family and they understand your wishes, because if the time comes, you won’t be around to tell them.
If you are already registered, thank you for your “birthday present” to Rose and to everyone else on the waiting lists. I will probably never get to say Thank You to whoever helps give Rose more life, so I will have to make it a general THANK YOU to everyone who has registered as a donor. It really will make a difference for somebody.
<Humor Circuit back to normal>
I don’t want any of you redside folks to get the idea of running down to the Facemaker and picking up a set of lungs. The doctors here seem to be pretty picky about knowing where the organs came from…..
Thanks for taking the time to read my ramblings, and please wish RoseVortex a Happy Birthday. Hopefully she’ll be back playing in a week or so.
I love you Rose.
Thanks for reading this far My posts tend to get kinda long…..
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@Kalkin – Liberty
ArcherBot – lvl50 TA/A
Wish RoseVortex Happy Birthday, please become an organ donor.
on September 26th, 2008 at 1:23 pm
Happy Birthday, Rose!!!
You have weird hair, and a beautiful smile… And a husband who obviously loves you very, very much… That’s so important when you’re going through something like this… I have a wife who loves me very, very much — she made it easy to want to get through all of this…
I imagine that, from time to time, this might be terrifying for both you and Shuroki… But Oh-My-God, Rose — wait until you’re through this and on the other side… This breathin’ stuff is freakin’ amazing. It’s been over eight years for me now, and it still rocks my world every single day…
I too have cystic fibrosis… My CF took the upper hand 11-12 years ago and we decided that new lungs was going to be my solution too… I waited an unusually long time at the time I waited — but I survived — and I survived the surgery and recovery… I was transplanted 4 days before my 40th birthday…
You’ll survive too — I can see it in your smile… And I hope this rocks your world too… I don’t think we realize how much we struggle with our CF until we’re not struggling any longer… It’s beyond explanation, Rose… Maybe you do too, but now and then I had dreams where I didn’t seem to have CF — I was running or doing something and not coughing and exhausted… I know now that I wasn’t qualified to have those dreams… I didn’t have the frame of reference… How I feel now is more amazing than my wildest dreams…
I have some of my story at http://www.ClimbingForKari.org and I blog about organ donation at http://www.ReviveHope.com Your husband also has my email address (and it’s on my website) if you have any questions or thoughts or concerns about getting new lungs… I’m only too happy to give you my opinions and throughts…
I’ve been lucky enough to learn of my donor — the beautiful 17-year-old girl who saved my life… Her name was Kari and she was from Iowa… I think about her throughout the day, every day… I can see her smile when I close my eyes… I hope you get what you need soon… I hope your recovery is amazing, and your life afterwards is wonderful… I hope you have many, many more happy birthdays…
You take good care of her, Shuroki… And you take good care of yourself too… I have little doubt you are one of the biggest reasons she wants to stay on this beautiful planet…
Love,
Steve
Steve Ferkau
Chicago, IL
on September 26th, 2008 at 1:26 pm
p.s. Shuroki — on behalf of Rose, and on behalf of so many people waiting for lungs and hearts and livers and kidneys… And some of us who have received them too… Thank you for reminding people how important, and special organ donation truly is… And reminding them about the 99,000 people waiting for a hero, including one very special to you…
on September 30th, 2008 at 4:54 am
Steve, thank you for your post, I’m the original author.
In one of those strange happenings, RoseVortex (my wife’s “Global Handle” on City of Heroes) aka Allison, just finished her transplant surgery…..on her birthday.
They called yesterday afternoon while she was still in the hospital and said they had a potential donor….we went from there right into surgery which apparently went well. Now its off to ICU and recovery.
This has been the craziest week I can remember, but its the best birthday present for her I can imagine.
We’ll be in touch down the road….
Kalkin/Eric (Kalkin is *my* global ID in the game)
on September 30th, 2008 at 7:30 am
Hey Kalkin!!!
I realized, after reading the whole thing a dozen or so times, that it wasn’t Shiroki who posted this… I really should read more thoroughly — my wife yells at me about that all of the time. But, I do the same thing when she’s speaking too — she regularly looks at me when she’s talking, pauses, and says, “You’re just watching my lips move, ain’t you…” (She does have beautiful lips…)
I’m so happy for your wife — and for you and your children… She’s in for an amazing journey… I hope so very much that her recovery, and her life afterwards is as amazing as mine has been…
My beautiful lungs came four days before my 40th birthday — all of our friends and neighbors were planning a big, surprise 40th birthday party for me — that got screwed up! But I got a combination 41st / 1st party the next year… Wow — Rose will have something so very special to celebrate for the next many, many birthdays!!!
It’s going to be a crazy couple of weeks, and months for you guys… You take good care of her… You’ll come across some scary times, and wonderful times — take things a day at a time — and deal with problems as you encounter them — don’t imagine or fantasize about problems or complications that may, or may not happen — deal with them when they present themselves, and get through them…
And I hope Rose is breathing like me very, very soon… It’s beyond explanation, Eric… It’s been over eight years for me and it still amazes me every day…
And if there are any questions I can answer, from a patient’s perspective, just hollah!!!!
Love,
Steve
on October 6th, 2008 at 3:45 pm
I hope Rose is doing well… It can get a little bumpy after the surgery — but it gets better. Hope she’s hanging in there!!!
Love,
Steve
on October 7th, 2008 at 11:27 pm
Yes she’s doing excellent. She has taken back her blog (I was filling in) at http://sahmtojandk.livejournal.com if you want to stop by and see how’s she’s doing.
Kalkin/Eric