Dear family and friends,

We hope many of you will join us on Saturday, April 6^th as we gather in honor of Kelly Langs. We will meet at Arlington Garden in Pasadena, California between 10:00am to 12:00pm, with refreshments to follow at the home of Susie Langs.

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Arlington Garden  

275 Arlington Drive, Pasadena, CA 91105

(Between So. Orange Grove Blvd. and So. Pasadena Ave.)

For directions and a map to the garden, please see the following link:

http://www.arlingtongardeninpasadena.org/visit-the-garden/

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It is recommended that guests park and enter the garden from Arlington Drive, at the first entrance as you turn off from Orange Grove Blvd. We will gather by the fountain at the Tuscan Steps near the center of the garden, where memories and stories of Kelly can be shared. Please be prepared to walk along gentle, but rustic paths so you can enjoy the simple beauty of the garden.

Following the service, guests are welcome to join us for refreshments at Susie’s home at: 310 Congress Place in Pasadena. Directions will be provided at the service.

As a reminder, we have an eVite invitation that you may use to RSVP.  Please CLICK HERE: http://new.evite.com/l/T6TUKONNGA if you plan to attend.

If you have any questions, you can contact Lisa at: (435) 760-9071 or email her at: lisa(dot)langs(at)usu(dot)edu OR Susie at: (626) 799-5503 or email her at: langssusan(at)gmail(dot)com.

We look forward to being with you.

Dear family and friends,

We would like to invite you to join us to remember and honor Kelly Langs. We will be gathering on Saturday, April 6^th 2013, from 10:00am to 12:00pm at Arlington Garden in Pasadena, California.

We would love for you to share your memories and stories of Kelly. This is a celebration of her life. It is her desire that you come dressed comfortably and to reflect the feeling of springtime.

Arlington Garden is a dedicated public garden. It is a peaceful place, one that offers simple beauty and a reflective nature. More importantly, the garden is truly beautiful in the spring when the wildflowers are in their full glory. Please be prepared to walk along gentle, but rustic paths. There are many quiet spots to sit and enjoy. Light refreshments will be provided.

If traveling is not an option, we hope you will join us and be with Kelly on this day in spirit. For those of you who can travel for this occasion, we look forward to being with you and having the opportunity to meet many of you who Kelly held so dear to her heart.

PLEASE LET US KNOW IF YOU PLAN TO ATTEND.                                                                                                                         There are two ways you can respond to this invitation:                                                                                                               If you CLICK HERE: http://new.evite.com/l/T6TUKONNGA                                                                                                           this link will take you to an evite invitation. Where it says, “Will you attend?” you will need to click one of the options: “YES,” “MAYBE,” or “NO.” You will be prompted to enter your name, your email, and the number of people in your party.                                                                                                                                                                                   ~ OR ~                                                                                                                                                                                                     You can send Lisa an email at: lisa(dot)langs(at)usu(dot)edu to inform us of your plans to attend or not attend.

Arlington Garden                                                                                                                                                                                      275 Arlington Drive Pasadena, CA 91105                                                                                                                                      (The garden is located between So. Orange Grove Blvd. and So. Pasadena Ave.)

In lieu of flowers, we would like to suggest a donation to further the research of Cystic Fibrosis,                            http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/                                                                               and may a Cure be Found.

If you have any questions, you can contact                                                                                                                                 Lisa at: (435) 760-9071 or email her at: lisa(dot)langs(at)usu(dot)edu;                                                                                     ~ OR~                                                                                                                                                                                                       Susie at: (626) 799-5503 or email her at: langssusan(at)gmail(dot)com.

We hope everyone can feel Kelly’s presence in their life now and forever.

A moment of reflection and silence in honor of Kelly Langs as she prepares herself to donate her organs to others.

What is about to take place, the gift of life, is something that Kelly has always held very dear to her heart, and is something she wanted you to hear.

The following are Kelly’s sentiments she wrote on her blog on Dec 2, 2011, prior to her receiving her own gift of organ donation by someone else on Dec 6, 2012.

True Beauty in Organ Donation:
Organs are precious and they have the ability to keep giving. … It’s the cycle of life, and we as humans have an amazing choice to make in that hour of our end – to give the gift of life to someone next to you who needs it.

It’s not like any other gift you’ll ever have the chance to give again. It’s a onetime thing, and the most precious gift of all, one that you could very well be asking for one day yourself! We’re all human, we all function on organs and we’re all part of this cycle of life – together.

I’m on the transplant list, waiting for lungs. I’m also a registered organ donor in case there’s anything of quality and strength that can be passed on. I know my eyes are awesome, 20/20 vision! So someone will be able to see for the first time when I leave this body. That truly makes me happy and makes me feel like I’ve chosen the ultimate human gift!

You can give the gift of life too.
In honor of Kelly we have set up a way for you to become a registered organ donor.  If you feel you have learned from Kelly’s journey this is something you should consider.  To learn more about becoming an organ donor please click here: http://www.donatelifecalifornia.org/KellyLangs

Multiple people this very second are preparing for their journey to receive the gift of Kelly’s organ donation.  They “got the call” a few hours ago and are told “we have a match for you”.   They are rushing to the hospital, calling their loved ones with immense anticipation and fear, and probably updating their blogs too.  Believe in yourself, Kelly would say to them, everything will be okay.   Appreciate every moment.

Kelly will be donating her organs tonight at 11pm PST.  Her liver and both her kidneys will be going to three very lucky people.

Please join us in a moment of silence at 11pm as Kelly’s words above will be read out loud in the operating room to honor Kelly’s gift and the remembrance of her life.

With love and appreciation,
Kelly and her Family

p.s. there will probably be many questions regarding the transplantation process and we (and hopefully others) will try to answer them. Please contact Donate Life  if your questions have not been answered.

Hello dear friends, family, and followers of Kelly,

I am imagining a place where we all can sit together and talk. A place where our hearts and minds are open, and that each of us can feel the good nature that is all around us.

Please prepare yourself with a deep breath as we have some news for you. Kelly passed on January 1, 2013. I hope you can feel her presence right now, because she is sitting right next to you.

We feel that Kelly has a message that she would like to share with each one of us who has joined her in her journey. She would say to you, that it is OK to feel whatever you are feeling right now. Please know that she encourages each of us to continue to face your own life’s challenges with dignity, courage and love.

She transcended her own CF challenge to become an icon of hope, not that she was in want of attention (it took most of her life to feel comfortable in sharing her challenges with CF). She never wanted to dwell on this; she always wanted to move forward with grace and ease. She looked for beauty in every individual and every thing to find comfort and joy in the life that surrounded her.

Her vivaciousness was how she faced her journey, and this was her message. It is her teaching us how we can move with grace and ease in our own lives. Her journey is not over.

Kelly’s passing was not due to her new lungs, but a hemorrhagic stroke. Her stroke was a way to bring a very definite, peaceful, and painless end to this part of her journey.

We would like to continue Kelly’s blog. We do not yet know what we will say or when it will be, but we would like to continue Kelly’s message. If you would like to stay informed, please follow Kelly’s blog by entering your email at the top right of this page and click “sign me up”.

If you would like to share what Kelly means to you, please share your message in the comments below. We would like to hear it as your positive energy continues to support us and everyone involved in this journey.

Please always know Kelly is with you and keep her beautiful smile in your mind.

With all our love and appreciation,

Kelly’s family.

We will be having a celebration of Kelly’s life to honor her in the coming months. Details to follow.

Dear family, friends, and followers of Kelly and her transplant journey,

We need your prayers, love, positive vibes, and well wishes.

Kelly needs all your love and prayers, now more than ever.
She has been on ECMO for 17 days and has not positively progressed; her new lungs have not begun to heal to the level the doctors were hoping.

We are outside of the typical 3-10 days in which this procedure is used; sometimes ECMO is used longer, but the potential risk of complications with the machine, drugs and procedures associated with staying on ECMO is increasing every day. There are now signs that Kelly’s new lungs are “scarring”. This scarring, a form of pulmonary fibrosis, can increase and is limiting her lung function and her ability to heal.

To be specific, Kelly needs your prayers that her new lungs will heal. At this point she is not a candidate for a re-transplant. Kelly needs your prayers that her new lungs will become less stiff and more pliable, elastic, and will be able to take the necessary breaths to support her life and heal.  Healing is difficult to achieve and what has happened is hard to reverse with lung transplants. Kelly needs your positive thoughts and love now more than ever.   Your positive energy does make a difference for Kelly and for the support that is around her.

Please hold your positive thoughts, love and the happy feelings you will have when she is back on her feet.  She can still make it through this!

Attention Cysters, Fibros and Medical Researchers: We need your help.

We are in a constant state of learning and we are recruiting any Cysters and Fibros (those with CF), or individuals with medical research experience to help with the process of learning and advocating how Kelly can/should be optimally supported. A friend many years ago shared a mantra I have since voiced for many years, “You must be your own best advocate.”  Now is the time. We are not willing to stay status quo.

If you have any specific insights into the CF world and specific circumstances we are facing (injured or scared lungs needing to heal), or if you could provide any support through medical research (regarding injured and scared lungs needing to heal), please help us. Please send an email to Preston to join the team: Preston (at) PrestonClark (dot) com

Let all of the love and light continue.

Love,
Lisa and Preston

Hi Everyone:

Well, one  thing we’ve learned: not everything happens as anticipated  or when anticipated. Kelly was sedated early this morning, as  planned, but the  doctors felt that they needed to do some  tests on  the  fluids in  her chest cavity to make sure there was nothing restricting her lung function. Once they did a  bronch, they found that her lungs were clear, so continued slowly giving  her  oxygen during the day, watching  how the lungs were expanding. Since  they are a little stiff, the  oxygen needs to be infused slowly, to slowly  expand them. So, tomorrow, they  will  continue the same  procedure,  as planned last night. Unless,  of course,  they decide  something else this  evening.

Since there have been several requests for a mailing address for Kelly, here it is:

Stanford University Medical Center,

ICU, (Patient Kelly Langs), Room 27

300 Pasteur Dr.,

Stanford, Ca. 94305

We want to thank her friends who have already sent cards, and especially  to the  wonderful  family in Alabama, who have sent quite a few cards, and especially to their dog Reilly, who has also had a recent  operation and has sent 3 cards empathizing with Kelly and wishing  her well. Kelly will love reading  them.

I’ll be sending another blog tomorrow.  Susie

Hi:

Today is a day of rest, after a full day yesterday of being less sedated, while they watched how she did. It was a long, and tiring day for her. So tomorrow they will start early in the morning, giving her more oxygen over a longer period of time during the day, to watch how well her lungs oxygenate on their own, and how much the ECMO machine will be needed in support. They will be checking this all day, with a decision to be made later  in the day as to how well she did, and therefore, what the next move will be: will they continue to reduce her dependency on ECMO to let her lungs continue to expand and receive oxygen on their own, or will they decide that she’s not quite ready yet for that, and decide to leave her  on the ECMO to wait for the right time? The word “BALANCE”  is a much used word here. Not only as to how her lungs are tolerating the exchange of oxygen, but also between the pulmonary  specialists and the surgical doctors’ medical points of view as to the use of the ECMO. They are all focused  on reaching the same goal, but there is a slightly nuanced difference in procedure between the two.

The  one thing we all  have to remember, even though we have those “peek-through” moments, is that we have a long way still  to go. She is definitely  getting  better, and  her X-rays look  more clear every day. Nurses who  were with her  in the first week  of ICU and are returning now from vacation, are seeing a  marked improvement. But the doctors  keep reminding up  that we are still in the “baby-step” stage.

So  hang in there. I  will get back  to you tomorrow afternoon  or evening.  Susie

Hello All:

While Lisa is with her beautiful family in Utah for the Holidays, I will be filling in.

When I arrived this morning, Kelly was looking like she had been out  in the sunshine, which is finally shining here. Her cheeks were pink, and she was semi-awake. Best of all, her feeding tube was out  of her nose, so she has no tubes left in her mouth or nose.

Her sedation level is lower, and her heart is showing greater strength which is helping send more oxygen to her lungs. She is still  on the ECMO, but she is needing a little less support from it.

As Preston and I stood next to her, she seemed very aware of our presence, squeezing our hands, raising her eyebrows and trying to make words with her mouth which, unfortunately, we couldn’t understand. We keep telling her that we’ll have a lot to talk about when she can once again talk. But the best was when Preston leaned over and whispered to Kelly that he loved her. She then turned to him and gave him a great big smile. When he leaned over to give her a kiss, she gave him a kiss back! Very, very sweet.

This was the most interactive we’ve seen her, and is the best Christmas present we can ask for.

I’ll keep you posted, Susie

The skies in Kelly’s new lungs are clearing.

Although the kind of healing Kelly is going through is long and arduous, she is noticeably improving every day. The doctors have made several really positive comments over the past few days, including this morning’s, “she’s doing great,” and “she’s going in the right direction.” There was discussion today of seeing if Kelly will be able to come off the ECMO machine sometime mid-week (probably after Christmas). Because of the fragile nature of how ECMO is supporting her right now, they are keeping close watch on Kelly’s sedation levels (among about a million other things). She appears to be comfortable and is sleeping most of the time. During the day the sedatives are very gradually lowered to help her wake up some and to see how she responds to simple requests like squeezing hands, holding up fingers, and to see if she has any pain. If she does show any agitation, anxiety, or pain, they will up her dose just a bit to help keep Kelly calm and stable. It’s definitely a balancing act, but this seems to be working pretty well from our standpoint as it is clear that Kelly is doing better. We continually remind her of all the positive vibes, prayers, and well wishes from everyone. We remind her of where she is, what has happened, and that she is healing now.

I am at the airport right as I write this as I need to check in with my 2 little girls, husband, and family in Utah. Preston’s mom, Pam, will be arriving here tomorrow to provide some additional support over the holiday. Thank you Pam! The next few days for Kelly will be interesting and we will continue to keep you all posted.  Best wishes to everyone for a happy and healthy holiday.    Love Lisa

Kelly is on a steady course of getting better. One step at a time. She’s looking stronger. The sedatives are still quite high as they still have her on the ECMO. They tested her tolerances yesterday to see how she would do when the decrease her level of heart support. She tolerated it pretty well this time. Hopefully it won’t be long before they feel Kelly is strong enough to transfer her to a lower level of ECMO support (from heart-lung support to just lung support).  I haven’t seen the X-rays for the last 2 days, but the doctors have said that they are seeing slight improvements. They switched the vent out for a trach yesterday. The reason for this was to give Kelly’s throat a rest and to make her more comfortable. They didn’t want her on the vent for too long. The trach will also allow for her to talk when she is ready. I think Kelly does look a little more comfortable and she has made some effort to communicate. But all in good time. They really don’t want her to put effort into communicating yet. Hand squeezing and facial expressions are  good enough for now.  She is in recovery mode and we don’t want to take any energy away from that right now. Of course I am looking forward to hearing from Kelly what all she has been thinking about, but that can wait. They have slowly increased the amount of nutrition Kelly is getting over the last couple of days and she has met her goal for her body size (50cc). Keep it up Kel! You’re doing well!

No clots were found in the CT which is what we were hoping for. Things are steady. X-rays this morning showed a little more clearing. One step at a time. They are trying very gently to bring down the ECMO support of her heart in the hopes that Kelly will tolerate this so she can take over that responsibility on her own. Long way to go still, but she’s making progress.

Good job Kel! Keep it up! Love Lisa

Back in ICU safe and sound. Results won’t be available until tomorrow am.

Sleep well Kelly.  Big day tomorrow.

LL

The doctors have decided to take Kelly downstairs to have a CT scan along with the whole ECMO apparatus in tow. They want a better idea of what is causing the white part in Kelly’s X-rays. As I said in the last post, the X-ray looked better today as there seems to be some clearing (more dark areas), but the X-ray only provides a 2-dimensional image. They want to know if there might be a clot behind the lung that is mechanically preventing her lung from functioning.

There haven’t been any results from the culture to speak of. They finally have a feeding tube in position for her now. Of course it was only in for 1 hour before they decided to take her downstairs for the CT scan. They don’t know and may never will know what caused this injury to her lungs. All other organs remain stable, but the doctors really want her to move forward. You can’t remain “stable” in ICU for long. So we’ll keep you posted on the outcome of the CT scan. She is on her way down the hall now for the scan, hopefully they’ll have her back in place in the ICU after about an hour.

Steady as she’s goes!!!! Love Lisa

::  Namaste  ::

I honor the place in you in which the entire universe dwells.
I honor the place in you which is of love, of truth, of light and of peace.
When you are in that place in you and I am in that place in me,
We are One.

::

The skies are clearing for you now. Your lungs are beginning to improve. The fog is clearing now. We need you to focus on your breathing. Be confident in yourself. This is the moment you have been waiting for. Welcome them home into your world. Together you and your new lungs will grow and expand one step at a time. Be patient, be comfortable knowing that this is the way. You have the power. In your own way you will accomplish what you have come here to do. You will be using what little strength you have, to turn the corner. You will be using your spoons today.

We need you to focus on your heart. Your heart will give you strength.

As the sun rises this morning I have renewed strength.

There are blue skies ahead with many beautiful double rainbows. We want you to stand by us as the sun rises.

Breathe in…  Breathe out…  Breathe in…  Breathe out…

:: Namaste ::

We just met w/ the pulmonologists. They showed us Kelly’s lung x-rays. Things are about the same as yesterday. They were hoping that there would have been more improvement by now. So the goals are the same as yesterday – trying to dry the lungs so they can heal. They said Kelly seems to be tolerating all of this pretty well as her other organs are functioning fine. Kelly is responding to the nurse’s requests to wiggle her right, then left feet, and hands. Preston felt a little squeeze from Kelly morning. I started reading all the comments from the blog to Kelly this morning. I will continue to read and re-read as long as I need to. Thank you, thank you, thank you for your support and prayers.

Lisa