Join Our Mailing List
Email:
Visit our blog  Find us on Google+  Find us on Pinterest  Like us on Facebook  Follow us on Twitter

 

Safe Eggs
Log Out | Topics | Edit Profile
Forum Archive
 

Meeting Kelli :-)... Log Out | Topics | Register | Edit Profile

TransplantBuddies.org Forums » Buddies Blogs » Glad to be back! - NiceCFer » Meeting Kelli :-) « Previous Next »
Author Message
Nicecfr
Member
Username: Nicecfr

Post Number: 60
Registered: 11-2008
Posted on Wednesday, July 15, 2009 - 11:42 am:   Edit Post Delete Post Print Post

Yesterday I was fortunate enough to meet up with Kelli and her dad. We met at Cedars Sinai where Kelli and I both had our transplants. They were both awesome and I hope to meet up with them again in the future. I have a couple pic's i will post soon.
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
eccoblue
Member
Username: Eccoblue

Post Number: 876
Registered: 05-2008
Posted on Wednesday, July 15, 2009 - 12:03 pm:   Edit Post Delete Post Print Post

Michael,
It was great to meet you! I posted a pic of us on the sighting thread. Before we went home I had my blood labs drawn and it was really crowded too. At least I was lucky and they got the needle in on the first try. When I got home I slept all afternoon and night, making up for all the sleep I missed the night before. Btw, you're a really cool guy. Looking forward to speaking to the student nurses with you about transplant awareness and our stories. I'll try to ignore my dad if he's in the back of the room videotaping everything. Ugh!
Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
eccoblue
Member
Username: Eccoblue

Post Number: 877
Registered: 05-2008
Posted on Wednesday, July 15, 2009 - 12:06 pm:   Edit Post Delete Post Print Post

My dad scanned this and I wanted to share it with everyone.


Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9704
Registered: 05-2003
Posted on Wednesday, July 15, 2009 - 01:14 pm:   Edit Post Delete Post Print Post

Great article & Photo Michael.

Keep up the Awesome work! You can always print out one of our TranspalntBuddies flyers on the About us page and give this to your transplant team. Perhaps they will approve of you sharing our group with the newbies who are waiting?
Just a thought....
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Nicecfr
Member
Username: Nicecfr

Post Number: 61
Registered: 11-2008
Posted on Wednesday, July 15, 2009 - 02:38 pm:   Edit Post Delete Post Print Post

That is a really cool Idea Risa. I will do that if it is ok with you.

Kelli I am glad you went home and got some rest. I could tell you weren't feeling too well and pretty tired. Your dad was great and i could see how much he cares about his little girl. I will let you know when I am asked to speak at C.O.D. You have a powerful story to tell Kelli.
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9710
Registered: 05-2003
Posted on Wednesday, July 15, 2009 - 04:57 pm:   Edit Post Delete Post Print Post

Here is our flyer
http://www.transplantbuddies.org/images/TxBuddies_poster.pdf

Thank you Michael!
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Karen R.
Member
Username: Relivkaren

Post Number: 3259
Registered: 07-2007
Posted on Wednesday, July 15, 2009 - 08:37 pm:   Edit Post Delete Post Print Post

Michael and Kelli:

How great that you met each other. Kelli, I saw the picture on the Transplant Buddies sightings post. Great picture!

That is really cool that you two may get to some organ donation awareness together.

Michael, that's a great article about your volunteering. What a wonderful way to give back!! Thanks Kelli for posting it.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2638
Registered: 02-2008
Posted on Wednesday, July 15, 2009 - 09:27 pm:   Edit Post Delete Post Print Post

Michael, you and Kelli are "TOPS" in my opinion. I shared this wonderful meeting by you two folks with our heart pal Micky Byrne of England, the steel guitar playing heart recipient that you recently spoke to on the phone over there in England.

Only wish that I could have been there at Cedars Sinai Hospital, posing with you, by golly.

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
eccoblue
Member
Username: Eccoblue

Post Number: 880
Registered: 05-2008
Posted on Thursday, July 16, 2009 - 12:57 pm:   Edit Post Delete Post Print Post

I still hope one day that we can have a Transplant Buddies convention where as many of us as possible can meet and have fun together for a few days. We are all a special family with Risa being our beloved mom and the rest of us as brothers and sisters. While we're at it we can also get the media involved (it's a great story) and really show the world the importance of organ donation in a very positive way. What a photo op!!! Lots of YouTube videos and more. All the OPO's can get involved, too. Maybe we can find some corporate sponsors who would like the PR they would get.
Love,
Kelli

Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9717
Registered: 05-2003
Posted on Thursday, July 16, 2009 - 01:32 pm:   Edit Post Delete Post Print Post

Great idea Kelli
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Karen R.
Member
Username: Relivkaren

Post Number: 3268
Registered: 07-2007
Posted on Thursday, July 16, 2009 - 08:31 pm:   Edit Post Delete Post Print Post

Kelli:

That is such a great idea! My mind is turning. I am just wondering if this could be a reality one day. Keep thinking about it and I will too!! :-)

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Nicecfr
Member
Username: Nicecfr

Post Number: 62
Registered: 11-2008
Posted on Thursday, July 16, 2009 - 11:09 pm:   Edit Post Delete Post Print Post

Thank you guys for the very kind comments. Kelli I think that is an awesome idea. just remember that anything is possible. :-)
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
Nicecfr
Member
Username: Nicecfr

Post Number: 63
Registered: 11-2008
Posted on Thursday, July 16, 2009 - 11:23 pm:   Edit Post Delete Post Print Post

Kelli I could have used you today. I was asked to go and speak with a man who is being evaluated for a heart transplant . I was told he was very scared and nervous. When i walked into his room i found this big man with a cool accent from Trinidad. They were correct about him being scared. He let me know straight away that he was scared to have this transplant but he knew it had to be done. He asked me about post transplant meds and many of the do's and don'ts after transplant. I left his room feeling as if I had eased some of his fears. That one man and our conversation totally made my day.
I am not usually asked to see Heart patients,they have heart transplant volunteers for them. Today there weren't any heart volunteers around so that is why i was asked to see him. I am so glad I was able to meet him and can't wait to see him post transplant.
I really love being a volunteer at Cedars Sinai's Lung transplant department. I hope to do it until my health says different.
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
eccoblue
Member
Username: Eccoblue

Post Number: 881
Registered: 05-2008
Posted on Friday, July 17, 2009 - 09:56 am:   Edit Post Delete Post Print Post

I got a surprise call last night. My bro is flying out from Atlanta arriving today at PSP! He'll be with us for a week, so I may not be posting until he leaves. Thank God for air conditioning, the thermometer hit 113 yesterday.

More good news! All my blood work results were good, all within range. Now just need to have an updated echocardiogram, bone density scan, etc. My Tx doc is really happy. It's been 2 and a half years since my transplants.

Love the photo captions! I think the limo people look like mafia types or just mean looking security people.

My dad is going to write to possible sponsors, like Astellas, about the idea for us to have a convention. The seed is planted so all we have to do is give it water and sunlight and it will grow.

Love & Happiness,
Kelli

Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1653
Registered: 11-2004
Posted on Friday, July 17, 2009 - 10:28 am:   Edit Post Delete Post Print Post

Hey Michael!!!

What you're doing is a very good thing... It would have been wonderful to have Kelli there, with her new heart (and liver) and her life experiences (she's a neat person, ain't she?!?!) -- but frankly, sometimes these folks simply want assurance that transplant works... Whether they're a heart meeting a lung, or another heart -- they know that you received something you cannot live without -- and that you're standing before them and speaking to them...

Ain't it neat when you sense that you've eased some of their fears? I've been going to our transplant support group for almost 12 years now -- three years before transplant, and all nine years since -- I probably have missed 4-5 of the monthly meetings in the past 12 years... They helped me so much while I was waiting, it's a way to pay that back... Now and then a coordinator will ask if I'm willing to see someone admitted, or talk to someone on the phone... Like you probably have found -- it's not anything earth shattering -- they're not having these epic realizations -- you're just having a simple chat with someone... But I've had people come up to me years after those chats and tell me they had decided against transplant, but changed their minds after our chat... Sometimes it's as simple as another human being meeting someone who is a few years out and seeing that they're "normal" -- just connecting with the idea that this can work... If you're anything like me -- when you have one of those conversations years later, you feel 10 feet tall...

It's a good thing you're doing, Michael. You give others hope and inspiration... You may not have considered this -- but you've likely saved a number of lives because of that... You keep doing what you're doing -- I'm proud of you... You take care...

Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

http://www.youtube.com/SteveFerkau
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2653
Registered: 02-2008
Posted on Friday, July 17, 2009 - 11:05 am:   Edit Post Delete Post Print Post

Michael & others interested,
In regards to Michael's visit with that man with the cool accent from Trinidad, being evaluated for a heart transplant, I have a very similar story to tell.

While I was in St Lukes Hospital during the time of my post heart transplant in January 1991, I was requested by one of the Transplant Coordinators to walk down to room #1022 early one morning to offer my assistance & personal support to a young 18yr old African American boy named Oakley Williams. A heart donor had been located for him and he had become very fearful of his upcoming transplant. When I entered his room, he was curled up in a fetal position on his hospital bed and was very scared. His Mom & Grandmother were also in the room plus several nurses. I carried on a gentle conversation with him for almost 2hrs and finally convinced him to "Go for It !!". I then turned to his Mom and asked her to come to my room as soon as the surgical team came for Oakley. She did and I walked to the elevator, leaned down to give Oakley a gentle hug and explained to him that I would see him again in ICU just a short time post transplant. His heart transplant was very successful and he lived for many more years, even went to Jr College in Alabama. I spoke with him on the phone several years later.

Here's the very sad part of this story. I just this moment Wednesday Dec 17th 2008, called St Lukes to schedule my 18th year Annual Exam and my Transplant Coordinator informed me that my pal Oakley Williams had recently passed away.

The whole Transplant Team including transplant surgeon Dr "Bud" Frazier credited me for my intervention in this situation involving Oakley's transplant. Even though Oakley is now deceased, he had some wonderful added years because of a wonderful organ donor.

Advocating Organ Donation and offering our personal/spiritual support for others, is the most wonderful endeavor that we can encounter.

Kelli, I hope you Dad is instrumental in accomplishing this: "My dad is going to write to possible sponsors, like Astellas, about the idea for us to have a convention" This would be fantastic !!

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Karen R.
Member
Username: Relivkaren

Post Number: 3273
Registered: 07-2007
Posted on Friday, July 17, 2009 - 02:12 pm:   Edit Post Delete Post Print Post

Kelli:

Great news about your labs! It must feel good to get news from the doctors for a change!! :-)

Have a wonderful time with your brother. Enjoy every minute he is here!!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Karen R.
Member
Username: Relivkaren

Post Number: 3274
Registered: 07-2007
Posted on Friday, July 17, 2009 - 02:18 pm:   Edit Post Delete Post Print Post

Michael:

That is so cool that you can help at the hospital with the transplant patients. I know for me that when I met Patti and talked to her and her husband for awhile that I felt much more comfortable with my decision to get transplanted. I met Patti first here on Tx Buddies and then during my evaluation I met her in person at the Cleveland Clinic when we both had appointments scheduled the same day. It was wonderful to see how healthy and beautiful she looked after only a year or so post transplant. It gave me a lot of hope.

Keep doing what you are doing. It really makes a difference!!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Nicecfr
Member
Username: Nicecfr

Post Number: 64
Registered: 11-2008
Posted on Friday, July 17, 2009 - 08:12 pm:   Edit Post Delete Post Print Post

Awesome news on your labs Kelli!! My labs showed my Rapamune level was a bit high at 18. So, it has been lowered from 3mg per day to 2mg per day. My creatinin also went up but doc seems to think it was due to the high rapamune level. Anyway, have a great time with your bro!
Thank you Steve for your very kind comments! You are totally correct about feeling 10 feet tall after someone who i have spoken with pre transplant comes to me post transplant and thanks me for easing their fears. When i have someone tell me how much i helped them pre transplant it is as if they handed me a million dollars. In the year and half i have been a Volunteer at Cedars I have been blessed with many hand shakes and hugs. There have also been some pretty tough ones without the happy ending. I have learned to deal with those.
Bob, You are just an awesome guy period! I loved your story about Oakley. The way i see it, you were very instrumental in giving Oakley some awesome bonus years he would not have other wise had.
Karen, I truly keep you in my thoughts and prayers that your day comes when you receive a nice pair of new lungs. I am envious of you! i would love to meet miss peppermint Patti! :-) We have talked about meeting up but so far it hasn't happen. You always have a kind comment for everyone Karen. Your comments always put a smile on my face. :-)
If anyone can get this Transplantbuddies meet and greet situated Kelli's dad can!
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
rjaunsen
Member
Username: Eccoblues_dad

Post Number: 4
Registered: 03-2009
Posted on Friday, July 17, 2009 - 09:36 pm:   Edit Post Delete Post Print Post

Thank you for the vote of confidence, Michael. I'm happy to know there is an interest in having a Transplant Buddies convention. In order to communicate with possible sponsors, et al, I will need to be able to give a good estimate of the number of people who would and could attend, including anyone in the transplant community who also have a connection with members of Transplant Buddies. Also, a site would need to be chosen that would be suitable for things like transportation, things to do and see, near a transplant medical center, etc. With all this in mind, I think a query thread needs to be posted so everyone can give their input about who can come, where to have it and any suggestions. With this information, I can contact possible sponsors.
Thanks!
Kelli's dad
P.S. Kelli is enjoying being with her brother at the movies. Maybe, I'll post some of her baby photos later. Hope she doesn't mind too much.
http://rjaunsen.blogspot.com/
Nicecfr
Member
Username: Nicecfr

Post Number: 66
Registered: 11-2008
Posted on Saturday, July 18, 2009 - 08:58 am:   Edit Post Delete Post Print Post

Meet up with Kelli at Cedars! :-)


Me and Kelli!
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
Karen R.
Member
Username: Relivkaren

Post Number: 3282
Registered: 07-2007
Posted on Sunday, July 19, 2009 - 08:37 pm:   Edit Post Delete Post Print Post

Michael:

You and Kelli look awesome!! You are both the vision of health!! What a fun day meeting each other!

Thanks for your nice comments above and for your prayers. That means so much to me!!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Christena's Dad
Member
Username: Christenas_dad

Post Number: 309
Registered: 01-2009
Posted on Monday, July 20, 2009 - 08:56 am:   Edit Post Delete Post Print Post

Hello Kelli's Dad,

I would suggest St. Louis as a place to hold the Transplantbuddies convention. They have a well-respected adult transplant program at Barnes-Jewish Hospital, as well as a pediatric transplant center at St. Louis Childrens. This location would be central to most of the TXbuddies in the states, and it boasts a number of activities and attractions that could provide a lot of fun for the participants.

St. Louis is at or close to the confluence of several major interstate highways, and the local airport, Lambert Field, is serviced by most large air carriers including Southwest (which has very moderate fares) for those who chose to fly.

While I am a little biased about the town as that is where my daughter was transplanted, I also believe this provides a rational and logistical option for those who might plan to attend. I am sure the hospitals could provide meeting rooms, etc. to help facilitate such a gathering.

I hope this gets the suggestions flowing, and I hope you have a great day!
Christenas Dad
Father of Double Lung Recipient at St. Louis Childrens Hospital June 2005
Kentucky, USA
Christenas Journey is at www.christenasjourney.com
Nicecfr
Member
Username: Nicecfr

Post Number: 69
Registered: 11-2008
Posted on Wednesday, July 22, 2009 - 09:52 am:   Edit Post Delete Post Print Post

That sounds like one good idea. I hope we can get some input from others here at TransplantBuddies. We need to keep the ball rolling!
Michael Adams
Cystic Fibrosis/ Double Lung Tx, 2002
Diane
Member
Username: Mary_diane

Post Number: 152
Registered: 02-2009
Posted on Wednesday, July 22, 2009 - 11:31 pm:   Edit Post Delete Post Print Post

Michael and Kelli......great work!

Kelli I think your idea to have a convention with corporate sponsors is so COOL. You are so right, it's like Rise is our Mom and we are one big family. I think it would make such a wonderful INTERNATIONAL media event. What a great idea.

I wonder where a nice central place would be......maybe somewhere warm. Although 113 degrees is a titch hot for me.
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC
eccoblue
Member
Username: Eccoblue

Post Number: 882
Registered: 05-2008
Posted on Thursday, July 23, 2009 - 12:25 am:   Edit Post Delete Post Print Post

My bro went back to Atlanta this morning and I miss him already. We had fun together going to the movies, going to San Diego, etc. Now I need to catch up on reading the posts and posting new pictures.

I'm glad there's an interest for us to have a Tx Buddies convention. That is so cool! My dad needs to have an idea of how many of us could or would go and the best place to have it, etc. Any ideas on how to do a survey and have some kind of vote? Any possible sponsors will want to know if it's something they feel would be worth it. Probably at least 200 of us buddies would need to go and then all the families and anyone else in theTx community. Also we need to figure out the best time of year and make it far enough in advance so everyone can plan.

Christina's dad suggests St. Louis. Any other suggestions? If we have several we can have a vote. The only place in St. Louis that I've been to was to the top of the arch. (picture below)

Love,
Kelli


Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Karen R.
Member
Username: Relivkaren

Post Number: 3297
Registered: 07-2007
Posted on Thursday, July 23, 2009 - 09:40 pm:   Edit Post Delete Post Print Post

Kelli:

I know it's a bummer when our family has to leave us. My brother lives in San Diego. I have never been out to see him because when he first moved there Sammy was a baby and then I got sick. Going to visit him is one of those things on my list to do after transplant. He bought this pretty beat up house with a great view of the bay and totally remodeled it. He has done most of the work himself. My parents have seen it and are amazed. I have seen pictures and it is gorgeous. I would like to see it once in my lifetime. I will get there.

I would love to have a Tx Buddies convention, but I probably wouldn't be able to come unless I have had my transplant and I am feeling up to it, so don't plan it too soon! LOL! I would definitely drive to St. Louis to see everyone. I agree that it is a great meeting place. It's kind of in the middle of the US. I can't commit just yet, but I would love to be there.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.

Add Your Message Here
Post:
Bold text Italics Underline Create a hyperlink Insert a clipart image

Username: Posting Information:
This is a private posting area. Only registered users and moderators may post messages here.
Password:
Options: Automatically activate URLs in message
Action:
Topics | Last Day | Last Week | Tree View | User List | Help/Instructions | Program Credits Administration
 
Contact Us
Established 2000 © TransplantBuddies.org