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Meeting Kelli :-)...NicecfrKaren R.27 07-23-09  09:40 pm
Awesome time in Europe!NicecfrHostess Risa27 07-08-09  02:19 pm
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Nicecfr
Member
Username: Nicecfr

Post Number: 1
Registered: 11-2008
Posted on Wednesday, December 03, 2008 - 07:10 pm:   Edit Post Delete Post Print Post

A bit of introduction. My name is Mike, I have Cystic Fibrosis and had my double lung transplant on 12/06/02. It seems fitting that I rejoin TransplantBuddies almost six years to the day of my transplant. I found the old TransplantBuddies site just after being told I needed a lung transplant and I have to say Risa and a couple others were a big help in calming my nerves and plenty of info. I made some very close friends one of which passed away just after I had my transplant. Her name was Mimi and i still have a nice photo of her with Celine Dion which i use in my talks. Anyway, this site has sure changed and looks great! I hope to meet, share,and learn from many of you here.

Mike
Michael Adams
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1382
Registered: 11-2004
Posted on Wednesday, December 03, 2008 - 07:52 pm:   Edit Post Delete Post Print Post

Welcome Mike!!!

We're so glad to have you back!!! I think you were probably here and gone before I got here myself... I also have CF and I was transplanted on 4/8/2000... And I'd have to agree -- Risa, and so many others, are an incredible help to those of us on the transplant journey!!!

I'm sorry about your friend Mimi... One of the things that is so difficult about cystic fibrosis, and transplant, is that too many of us know too many people who came into our lives, made a home in our hearts, and then left us way before we were ready to have them leave... I had a beautiful friend named Lizzy who I'll never, ever-ever forget, like you'll never, ever-ever forget Mimi... Sometimes it seems so unfair that we lose friends in this business -- but so many of us understand how fragile and precious life is and these people we lose remind us we have to love our friends deeply and make sure they know we love them... Even though they're gone, they never leave our hearts...

When you talk -- are your talks about surviving cystic fibrosis? Or about organ donation? (Or a little of both?) I get to speak too -- I talk about my CF, but my focus is primarily organ donation awareness -- and creating awareness by telling people about my donor... I know there needs to be a cure for CF and that needs people to speak about that -- but my heart and my emotions now revolve more tightly around organ donation...

Glad you're here!!! Hope you're doing freakin' awesome...

Love,

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

http://www.youtube.com/watch?v=SvxpyfZ9Rsk
nicola j
Member
Username: Nicola_j

Post Number: 89
Registered: 08-2008
Posted on Wednesday, December 03, 2008 - 08:04 pm:   Edit Post Delete Post Print Post

Welcome back Mike. Weve never met on transplantbuddies because i only joined this year. But im looking forward to hearing all about you ,and hopefully i will get some useful advice from you?

Nic xx
Nicola/23/ England/Cystic Fibrosis/ on the waiting list for new lungs.
Karen R.
Member
Username: Relivkaren

Post Number: 2187
Registered: 07-2007
Posted on Wednesday, December 03, 2008 - 09:35 pm:   Edit Post Delete Post Print Post

Hi Mike!

Welcome back! I joined in July of 2007 so I haven't met you yet either. It's good to have you join again. I love hearing stories of people with lung transplants that have passed that 5 year statistic mark that the medical people insist on telling you. I was just at my GYN today and she mentioned that lung transplant only last 4-5 years. I am glad that you have proven her wrong along with a lot of other folks on this site.

I am waiting for a double lung transplant at the Cleveland Clinic so stories like yours are inspiring to me. I look forward to getting to know you better.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Double Lung at Cleveland Clinic

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

Post Number: 1508
Registered: 02-2008
Posted on Wednesday, December 03, 2008 - 09:58 pm:   Edit Post Delete Post Print Post

Mike, it's great to see you over here on the new site. Congrats on your 6th year post transplant. I too was a member of the original transplantbuddies site. You will discover many lovable folks here in the Forum.

Ol' Bob
Bob
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
CiscoKidney07
Member
Username: Gregg

Post Number: 1633
Registered: 03-2008
Posted on Thursday, December 04, 2008 - 06:54 am:   Edit Post Delete Post Print Post

Hello Mike. We have not met either, but welcome back and glad to meet you.
Will hunt for beer
DAP1122
Member
Username: Dap1122

Post Number: 449
Registered: 05-2008
Posted on Thursday, December 04, 2008 - 08:21 am:   Edit Post Delete Post Print Post

Mike,

Another ...... "we haven't met, and welcome back post". :-)

Please feel free to add your transplant date and birthday to out Tx Buddies calendar. The link is in my signature.

DAP
Transplant Buddies CALENDAR - http://www.2ndheartbeat.com/TransplantBuddies.html
www.2ndHeartBeat.com
DAP1122@Gmail.com
Heart Tx - 5/11/2007
DAP
Jeff
Member
Username: Jeff

Post Number: 1472
Registered: 07-2007
Posted on Thursday, December 04, 2008 - 03:16 pm:   Edit Post Delete Post Print Post

Like the other's said, welcome back and glad to have you. It would be hard to find a better group of helpful and supportive people than on this site. Thanks for spreading the work of your illness and organ donation, the more the work gets out, the better.
Jeff W.
Forum Leader-Kidney
dx: kidney failure, reason unknown JUN2007
Kidney transplant Oct. 26,2007
Living donor, my sister Patty
email: unclemud@gmail.com
Nicecfr
Member
Username: Nicecfr

Post Number: 2
Registered: 11-2008
Posted on Friday, December 05, 2008 - 10:24 pm:   Edit Post Delete Post Print Post

Thank you all very much for the warm welcome.

Steve not long after my transplant I started volunteering for Onelegacy(OPO -Southern California) I started speaking in High Schools on the importance of Organ donation. Since then I have also shared my story at local Teaching Hospitals here in Southern California. This Monday I will be speaking to Graduating Nurses at College Of The Desert in Palm Desert,California. When I share my story I do begin with explaining my daily routine with Cystic Fibrosis pre-transplant. I explain my transplant process,life post transplant, and finish talking about my 15 year old donor ,Tory.
I also volunteer at my transplant centers(Cedars Sinai) Lung transplant dept. and I love it! I meet with people every week who are coming in for transplant evaluation and those who have just had their transplants.
I am actually very good friends with my donors mother and sometimes she goes along and speaks with me which is always very powerful! Tomorrow on our anniversary of her son's death and my new life we will have lunch. We have done this every year for the past four years.
Hey Nicola I notice you are in England. I am actually half English as my mother who lives right out of Basingstoke is English.
Karen,stay strong and positive for your upcoming transplant. I know sometimes that is easier said than done.
Thanks again to all of you for all the kind words and the very warm welcome! I do look forward to meeting and chatting with many of you.
Thanks,
Mike
Michael Adams
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1387
Registered: 11-2004
Posted on Friday, December 05, 2008 - 10:54 pm:   Edit Post Delete Post Print Post

Hey Mike!!! I get to meet a bunch of OneLegacy folks at the end of the month!!! (I get to ride the Donate Life Float in the Rose Parade this year, so I'm heading out there!!!) They seem like awesome folks...

I imagine you speaking, and your donor's Mom speaking has to be incredibly powerful... That's wonderful that both of you are so close... My donor family is about 9 hours from me -- I've met them once and they are a wonderful family... My donor's Mom spoke for Iowa Donor Network for a while -- but I think it became a little too hard for her... But I've taken up the torch... I'm also friends with several of my donor's friends -- they come out to climb with me, and I head out to Iowa to visit now and then...

Nurses and medical folks are some of my favorite audiences -- we not only get to tell them about organ donation -- but I see it as thanking all of the medical folks who helped me vicariously through my audience...

Everything you're doing with those folks waiting and early in their journey is just wonderful -- it means so much to people going through this journey to have someone who understands what they're dealing with available...

You take care, Mike!!!! We're glad to have you here...

Love,

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

http://www.youtube.com/watch?v=SvxpyfZ9Rsk
Nicecfr
Member
Username: Nicecfr

Post Number: 3
Registered: 11-2008
Posted on Saturday, December 06, 2008 - 12:05 pm:   Edit Post Delete Post Print Post

Hey Steve that is awesome you will be riding the float! My wife and I are decorating on the 29th. My donor was featured on the 2004 float with a floralgram I think it's called. How long will you be out here in Pasadena? This is our 3rd year decorating the float and it is always a very moving experience. You will meet some amazing people with incredible stories. Hope you have a great time and will be watching out for you.
Michael Adams
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1389
Registered: 11-2004
Posted on Saturday, December 06, 2008 - 02:52 pm:   Edit Post Delete Post Print Post

Hi Mike!!!

That's awesome that your donor was featured in 2004 -- and that you're decorating on the 29th! My princess and I are scheduled to decorate on the 30th from noon to 4pm... We're in Pasadena the entire week -- we should try to meet sometime!!! I know it's a crazy busy week but we should have some kinda time!

Talk to you soon...

Love,

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

http://www.youtube.com/watch?v=SvxpyfZ9Rsk
Heather
Member
Username: Heather

Post Number: 1659
Registered: 05-2003
Posted on Monday, December 08, 2008 - 11:43 pm:   Edit Post Delete Post Print Post

Mike..I remember you from the old site. I, too was part of that site as well as this all these years. Good to see you back. I go through the picture page on here every once in a while and see Mimi's picture and remember how sweet she was. It was a very sad day when she passed away. I did not personally know her but I could tell what a wonderful person she was. You lost a great friend.

Hope to see much more of you and hope you stay around.
Again, welcome back.
Heather

Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
Forum Leader - Living Organ Donation

DONATE LIFE
Nicecfr
Member
Username: Nicecfr

Post Number: 4
Registered: 11-2008
Posted on Tuesday, December 09, 2008 - 10:41 am:   Edit Post Delete Post Print Post

Awwww! Thank you very much Heather. Yes she was an awesome person. We really just started to get close when she passed away. She actually sent me the photo I spoke of to use in my talks. I have to say her pic with Celine is always a hit. So she is thought of quite often. With CF losing good friends seems to happen way too much. I have lost some of the dearest people you could ever meet to this awful disease. Including a young fifteen year old girl named Kira. I had always promised her I would visit when she had her lung transplant. Unfortunately Kira didn't make it to transplant . I did keep my promise and was able to fly to Canada and hold Kira's hand as she passed away. She was another amazing young lady taken way to early in life by this disease.
Thank you for your kind words Heather and I truly look forward to chatting with you.
Michael Adams
Hostess Risa
Board Administrator
Username: Risa

Post Number: 7481
Registered: 05-2003
Posted on Thursday, January 01, 2009 - 03:31 pm:   Edit Post Delete Post Print Post

Welcome Back Michael :-)

I am so glad that you joined us again.

I am sorry I did not see your Blog post. I was absent for a few weeks.

Congratulations on being involved with the Rose Parade.

Where you involved in a Parade several years ago (2004)? I remember an article about you and thought it was about a Parade.

I am so happy that you and Steve will be meeting. I sure hope you took a photo.
Risa@transplantbuddies.org
CF- diagnosed at 2 years old
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

TxBuddies Thanks page- Sponsors and Partners
http://www.transplantbuddies.org/html/thanks.php

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