Monthly Archives: June 2012

Jun24

Stunned. Thank You!

Posted on by
Standard

I am soooo overwhelmed and thankful. I do wish there were better words to use though.

I haven’t known how to say thank you for all of this support because I’m stunned. To date, you have all graciously donated a total of $25,124.00 in less than one month’s time. I can’t explain how much stress this has already taken off of our shoulders.

My family will have plenty to deal with and worry about after surgery, I’m sure, so that all of your donations will absolutely bring some peace of mind for the financial front.

Donors have ranged from…my immediate family, extended family, friends, family friends, friends of friends, friends of friends of friends, neighbors, my sister in law knows 12 of her friends that have donated and sooooo many people I don’t even know. It’s incredible!

ImageAnd how can I not notice the huge amount of supporters from the CF community, most of whom I don’t even know. I’ve always known the CF community is a strong group of people, but I never thought about it from my new point of view, as the pre-transplant patient. I love all the support, encouraging words and stories from everyone on my Facebook transplant page. I wish I could get to know each of you, as you go through your own journey of life, successes and CF.

This is not my style to be asking for donations like this, or even plastering my face and my CF story all over the internet. I think anyone who knows me knows this is not my thing, in general. Throughout my life, I’ve always been the CFer to hide my health problems, even when I had to go into the hospital. No one ever knew a thing, except for what they could hear of my coughing. “Oh yeah, I have *that* cold going around…” In college I remember going into the bathroom stalls to hook my little IV tubing up to my PICC line in my arm, hide it with my long sleeves and walk back to class. If anyone had checked my purse, they would have freaked out, ie: syringes and medicine all over the place.

But clearly we had to reach out to the masses somehow or else this transplant process would not work very well, and would turn out counter productive, for sure.

So thank you again for all of you who have helped us toward reaching our goal. We’re not quite there yet, and have some more fundraising to do, but man – this is an amazing start!!!!

And the pressure is on too, I need to do really well with these new lungs to make you all proud!

Jun15

Facebook Transplant Page

Posted on by
Standard

Imageon

Image

for a more social experience while I walk through this adventure. Not sure how this has happened, but we already have over 600 “likes” on facebook following my story. You can join the conversations over there as well, if you’re interested.

I’ll still be here too! XOXO

Kelly

(photo © Khate Sandoval and Meltem Marmara)

Jun14

Stanford Report – Month #1

Posted on by
Standard

My stanford visit went well and my numbers are essentially all the same since last month. I’m at 26% lung function, my CO2 levels are in the normal range still, my 6-minute walk test was the same as before and my oxygen use is about the same. What all this means is that I’m maintaining while I wait for the call.

The more compelling part of our visit is the fact that the transplant coordinator told us that they’ve done *30* transplants since January which comes out to about 5 lung transplants a month! HELLO THERE. She told me they’ve put more people on the list than ever and are doing more surgeries than ever. Big turn around. Can you believe that?! Me, coming from USC where there isn’t much transplant activity, I’m kind of freaking out. I think I might be next. 🙂

The transplant doctor who I met with said he “keeps seeing my name on the waiting list.” I told him we were ready to go to OR right then. He laughed and said that would be great. If only my new shiny pink lungs were waiting for me.

As we were driving back to LA yesterday, I couldn’t help but run through the call-scenario in my head, as if they were to call when we were driving home. “What’s the quickest way back?” At what point would we have been able to turn around and head back to the hospital within our 4 hour “window”? And then at what point would we have had to find a charter from where ever we were. So many questions, with possibly so little time.

It’s hard not to imagine the real scenario after hearing such high odds of them calling my name, at any minute. It’s an experience, that’s for sure.

Something else the nurse said to me which I found kind of funny. She said CFers are “really quite impressive” because of how “normal” we might look on the outside while our bodies can be dealing with so much. Sometimes you would never even be able to tell. It’s true and sad too, but at the same time I think that’s part of why people like to draw the conclusion that CFers are such “strong” people too. Yes, we deal with a lot of crap that we can’t stop on a genetic level, so then when we can stop something and put up a fight, we will! Don’t do wrong by a CFer, or they will tell you how it is.

Jun8

First Stanford Appointment

Posted on by
Standard

ImageMonday, Preston and I are driving up to Stanford Hospital for my first follow-up doctor’s visit since getting evaluated and accepted on their waiting list. I’m looking forward to getting back in touch with them in person. I want them to know who I am.

My main worry is my weight. I’ve been weary to get on the scale at home for fear that I’ve lost too much weight. And indeed, I’ve lost a lot since I was put on their waiting list. Aside from knowing my lungs suck, I’m challenged right now with the whole *food* thing. What a pain in the arss.

This is the worst kind of conundrum. My stomach gets to the point of starving with severe hunger pains while my mind is completely uninterested in food. Most foods don’t even sound good and in fact give me a tickle of nausea. So my challenge has been to keep my stomach satisfied, try to eat enough to gain again, all the while not barfing. Delightful.

I’m 15 lbs under my ideal “transplant goal weight”, which is a lot. Last month when I got listed at Stanford I was “okay” but still about 10 lbs under weight. Clearly it’s not going in the right direction and it’s definitely putting a lot of stress and worry on me that I might be dropped from someone’s waiting list or get called and not have enough proper fat and nutrients on my little bod to recover smoothly. As if I need anymore challenges while I wait for new lungs.

I haven’t been at this low weight for about 3 years now. I set out a long time ago to hit my goal weight of 120 lbs and eventually got there this past year. But now, the pounds are evaporating and my brain isn’t interested in eating – in working with me. I thought all members of my body were on the same team, but apparently that’s not the case right now. Well, maybe we’re still teammates but there are a few “issues” we need to work out.

Aside from actual food, I am able to just dump high-density, high-calorie shakes through a tube, right into my stomach. It bypasses my brain and keeps the belly-monster happy. As weird as it may sound, I’m thrilled that I have this option of a tube feeding at times like this. This is exactly why I got it, in preparation for transplant in order to maintain my weight when I wouldn’t be able to on my own. It takes a lot of my stress away from not being able to gain.

I suppose having a feeding tube is like having gastric bypass surgery, but the perfect opposite.

So please wish me luck for the appointments next week up north. I do hope they go well, and maybe even have lungs waiting for me by 3pm Wed. It would be convenient for sure.

Jun6

Taking Turns in the OR

Posted on by
Standard

ImageDouble lung transplants are definitely in the air today. I am filled with the thought that I’m up next. Could be. Where’s my phone!

I have two stories to share.

The first one is about one of my online CF friends who just got her 2nd transplant call. Her first call was less than 2 months ago, but it turned out to be a “dry run”. She has only been listed (also at Stanford) for 2 months total, and she’s experienced all of this activity with almost getting new lungs! Busy busy, hopefully tonight, right now, is her big day.

I’m still waiting to hear via facebook whether it’s a go or not. As of right now, she’s gotten past the OR doors, getting prepped, but even then there’s still a 10% chance the doctors could say “No, the lungs aren’t good enough, wait for the next call.”

Then, there’s another transplant story of a guy who just got his new lungs this month and is doing incredibly well! If I could choose, I would want my transplant to go as smoothly as his. He’s on day 20 or so post-transplant, and is recovering so well that his doctors (also at Stanford) told him after looking at his new xrays, “Your lungs look beautiful!” Oh the ring to those words must feel like… nothing else. This guy, I won’t mention any names, but he was only listed there for 1 month before getting called. I love hearing these stories because there aren’t any of them happening down here at USC. Nada. Zilch.

I’m sayin’, these people up there at Stanford are active in the lung trade! When you know a bunch of CFers as I do, it starts to feel like taking turns in and out of the OR. I know my ticket is coming up very soon. I’m actually a little nervous tonight, just thinking about those very real words I will hear soon, “We have lungs for you.” Gives me butterflies.

Pitter patter…pitter patter.

Jun6

Official Fundraising Campaign

Posted on by
Standard

Good Day to Everyone ~

Today is our official launch day for announcing Kelly’s Transplant Fundraising Campaign with COTA, because we’re going to need your help to make this transplant successful!

First off – *major huge news this week* – one of our “family friends” has graciously challenged Kelly’s Transplant Team with a matching gift based on the funds we raise, up to $20,000! Hellooo! Good Morning!

Now if that’s not an inspiring and invigorating way to jump start our fundraising campaign, not sure what is. This has all of my fundraising volunteers and I ready to start jumping through hoops to make all of this happen.

I couldn’t be more humbled by everyone I’m surrounded with right now. There are so many good people out there, and I’m filled with love. Truly. And, I have a feeling this is just the beginning…

_________________________________________________

NEW FUNDRAISING WEBSITE:    www.COTAforKellyL.com

ImageAll donations need to be done online through my COTA website link below, or you can mail them a check as well. Whatever you feel comfortable with is fine. Just know that all fundraising money has to be written out to them and they will be managing it. Preston and I will be submitting our transplant related receipts to them every week for reimbursement.

Any questions you might have about donating, please send to one of my volunteer friends at:

Melissa Lanchantin:  323.633.1500   [email protected]
Mary Buckley:  626.936.0494   [email protected]

_________________________________________________

NEW FACEBOOK PAGE:   www.facebook.com/kellystransplant

ImageWe will be posting fundraising activities and information and updates on our Facebook transplant page. Facebook is an easy way to share the information with your friends and family. So please “SHARE” what you can on Facebook about any and all of our fundraising goals. We need your help in getting more donations. We’re off to a fabulous start though, I must say.

If you’re interested in snail mailing or emailing a personalized letter to your friends about asking for donations, please do so and direct them to our COTA website www.COTAforKellyL.com, as that will be our main face.

Any questions you might have about the website and Facebook, please send to one of my volunteer friends at:

Susie Petrocelli (Webmaster):  [email protected]

_________________________________________________

NEW “RULES” REGARDING THIS BLOG

ImageBecause we’re using COTA (Children’s Organ Transplant Association) as the means for our fundraising campaign, I won’t be able to post/discuss anything fundraising related here. This is the case while we are working with COTA, because all fundraising information, activities and donations will be done on our new COTA website:  www.COTAforKellyL.com

My personal experiences as I go through this transplant adventure will remain the focus on this blog, but without mention of any fundraising updates or info. Those are the rules. That’s okay, because that’s what this blog has been about all along. This is the place I can share what it’s like going through this adventure and maybe, possibly, educate CF and transplant related facts from this little patient’s POV.  🙂

Please stay connected with me here, as well as on my COTA website for donations:  www.COTAforKellyL.com  and our new Facebook transplant page: www.facebook.com/kellystransplant