hope (4)

MY DAY WITH HOPE

Last Friday, the first of October, I spent a most wonderful day with Hope. Hope is my sixteen year old friend from church. I cannot describe the beauty of this young girl for she is beautiful both inside and outside. She stands about 5'3” with dark shoulder length hair, light olive skin, warm hazel eyes. For some mysterious reason I have been chosen to be her “best friend” which is a great honor to me. Friday was a gorgeous Fall day. The sky brilliant – the sun bright - a warm breeze ushered us on our way as we left Hope's house and headed off to Coeur d'Alene, Idaho, for lunch at Red Robin. She had a “big whopper” of a hamburger, and I broke the rules and gorged on french fries. Oh my, those forbidden fries tasted so good. Now Hope is a talker, and so am I, we lingered over an hour talking a mile a minute. I have to admit by the time we were ready to leave I felt sixteen again. As we were ready to leave the waitress asked Hope, “Is this your grandmother?” She answered, “No,” this is my best friend – a higher compliment I will never receive.

My precious little friend and I found our way to downtown Coeur d'Alene and the famous Hagadone Hotel that sits on beautiful Coeur d'Alene Lake. Like teenagers we cruised the tourist stores in the hotel. Hope holding on to my hand nearly every step of the way. When she wasn't holding my hand she was holding on to my arm. We decided we couldn't afford the gift shops so hand in hand off we went to see what main street offered. We stepped into a small  covered mall and right before our very eyes was this scrumptious little Candy store that had jars and jars of candy – way too much temptation! Once again I broke the rules. But. My little sack of candy was sugar free. With candy sacks in hand we strolled main street talking, eating, laughing and investigating every store both sides of the street.

We ended this wonderful day walking the boardwalk that sits on the lake and circles the hotel. It is such a magical place – the scenery is out of this world – the mountains – the sea gulls – the boats. It was the perfect ending to a perfect day as we talked of Hope's dreams for her future. I can't count the times that Hope told me how much she loves me and how much I mean to her. I was able to reciprocate her feelings and told her how grateful I am that God has sent her into my life. We spent six hours together and not once did I feel my years or think of my illness. Blessings often come in small ways and large packages. The blessing of this day will always be in my heart. There will be many more precious experiences with Hope – after all we are best friends.

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Hero of Hope Megan Mobley

Megan Mobley

Megan Mobley

Stacy VandenBranden, a Heroes of Hope Panel member and CF Center nurse practitioner in Chicago, sat down with one of our newest Heroes, Megan Mobley, 25, to discuss Megan’s efforts to help fund CF research and how having the will to stay healthy got her through tough times.

Stacy: What was the journey after diagnosis like for you?

Megan: I was diagnosed when I was five years old. I remember having the sweat test done and initially being in and out of the hospital two to three times a year through elementary school. However, by the time I reached middle school and high school, I was fairly healthy — I didn’t have any more hospitalizations. I grew up on a farm and, for the most part, I was able to do all of the things I wanted to do, like riding horses and herding cattle.


Stacy: When did you start to see CF setting you apart?

Megan: When I graduated from high school, I started to see how I was a little different from other people. I looked at things a lot differently than my friends did. My friends partied and I was never interested because I knew it wasn’t good for me. When you have a disease like CF, you tend to grow up faster than most people because you have to start learning how to take care of yourself at such a young age.

Stacy: Did you have a hard time in your adolescent years with adhering to treatments?

Megan: I never really found it difficult. I’ve always viewed my health as a top priority, so missing treatments was never an option for me.

Stacy: What advice would you give other young adults who have CF?

Megan: Time management is key. You have to be very organized and prepared for any situation that may arise. It’s also important to do what you can to avoid situations that could jeopardize your health. Sometimes I was unable to do things my friends were doing and it was a bummer. If they went camping, I couldn’t go because there were no electrical outlets for me to do my treatments. You just have to pick and choose what is most important to you. For me, it has always been my health.

Stacy: What has helped you through some of the challenging times with CF?

Megan: My family has been my biggest support system through the tough times. As for myself, whether I’m feeling well or not, the most important thing to me is sticking to my routine. I don’t let tough times deter my focus on staying healthy. Doing treatments is a preventive action, so I always make it a priority.

Stacy: Can you describe your fundraising efforts for CF?

Megan: Last year I raised more than $4,000, and my goal for this year is to raise more than $5,000. I am constantly following new research and developments in CF, and it has been exciting to see how far we have come. I want to help contribute as much as I can to help continue research that may one day find a cure. I really enjoy fundraising and will continue to do so for a very long time.

Stacy: Sometimes you speak to parents with newly diagnosed children. What do you say?

Megan Mobley

Megan: Speaking to parents with newly diagnosed children is really important to me and something I love to do. I’m very positive in my discussions with parents. I tell them how active I am and how I’m still able to do the things I love to do. I also encourage them to think about CF care 20 years ago compared to now. We have come so far, and the landscape is only going to get better.

Stacy: Do you have any advice for someone struggling with CF?

Megan: I would tell them that I know exactly what they are going through and there is hope and a future ahead. I would encourage them to stick with it and keep on moving forward. This is your life; you have to deal with it and make the best out of it.

Stacy: Do you have any heroes in your life?

Megan: My mom is definitely my hero. She gave me life twice, once by birth and again by signing the papers to give me a lung transplant last October.

Stacy: What does the future look like for you after having a transplant?

Megan: Possibility. Taking it day by day and enjoying the little things in life, like spending time with family and friends. I’ve always had plans for the future because I’ve never accepted that I wasn’t going to have one.

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Steve Ferkau tenth climb

This is my tenth climb...  When I come out of the stairwells at the top, and I do believe I will come out, I'll have climbed 16,320 steps for the Respiratory Health Association at this awesome event!!!

The year started out rather crazily...  On Christmas Eve I was in emergency surgery after a renegade gall stone the size of an angry, small dog (or mothball) tore through my gut...  An incredible surgeon, who is scheduled to do my kidney transplant, removed my gall bladder, my appendix, 6" of my colon, put it back together, hosed me out and sent me on my way with an awesome 10" scar up the middle of my belly!  A few weeks ago, she gave me permission to climb, sloooowly, and I promised I'd stop if my body says stop...  And I will.

I've got 150 crazy people on my team, climbing with me...  Among them, there are around 25 people who were classmates, teammates, grew up with, taught, coached, or knew and loved Kari...  Kari's sister & cousin are climbing with me...  Kari's mom & aunt will be here, cheering us on...  #15, #12, #9, #8, #7, #4 and #2 will be in the stairwells with me...  Kari was a star middle-hitter on her Algona High School volleyball team -- she wore #13...  Her teammates will be in the stairwells with me, and some of them are bringing their moms!!  One of her coaches, and one of her teachers will be with us too...  They're all coming out from Iowa, Minnesota, Wisconsin and Illinois to help me honor their friend and my hero...  Can you imagine what I feel like when I'm surrounded by people who grew up with, and knew and loved Kari?!?!  It's pretty amazing...  They're beautiful people -- and they give me a glimpse of who Kari would have become...

I do this to tell people about Kari, and about her goodness, and about the goodness of organ donation -- and we also do this for the Respiratory Health Association...  They fund research in lung disease, they help people stop smoking -- their work helps everyone breathe cleaner air...  They help people with lung disease breathe easier...  I know what it's like to breathe with diseased lungs, and now I know what it's like to breathe with the most beautiful lungs in the world...  One of their mottos has been, "if you can't breathe, nothing else matters..." I've lived through that motto -- and the RHAMC and all of these people who climb with me help other people breathe.  We have a very special mission...

I know that these are not the best of financial times for many of us...  If you have a couple of bucks burning a hole in your pocket, I or anyone else on my team would love a pledge...  But more than anything, I'd love it if you would check out my little website and read about the beautiful girl, and all of the people surrounding her, and me, who have allowed me to leap tall buildings...

To see my Hustle page or pledge me, click here...

To see my website about Kari, go to  www.ClimbingForKari.org

To find someone on my full Kari's Klimbers team, click here...

These climbs have meant so much to me...  Being surrounded by people who know and loved Kari, and by people who know and love me, is something that defies description...  And the support we've received from people like you has allowed me to tell so many people about Kari...  In the past 10 years, we've raised a quarter million dollars -- because of people like you...  Thank you...  I get to do a fair amount of public speaking, and often enough, when I walk into a room, more than one person pulls me aside and says, "You're the one who climbs a hundred stories with your new lungs, and with your donors' friends!!!" And often enough, they already know Kari's smile...  I am that guy, and I'm proud of that -- and more than anything, I want them to know her smile.  I will have had her beautiful lungs for 12 years in April -- and what she has allowed me to do is more than I'd ever dreamed possible...

And finally, and very important to me -- please consider organ & tissue donation, register to be a donor on your state's registry, and tell your family how you feel.  I know a beautiful girl from Iowa who knew how she felt and she told her family -- I think about her every single day.

Love, Steve

Steve Ferkau
Chicago, IL
Kari's Klimbers
BreathinSteven@gmail.com
www.ClimbingForKari.org


CBS interview from Jan 27, 2011:
http://chicago.cbslocal.com/video/6680773-lung-transplant-recipient-leads-team-in-hustle-up-the-hancock/

My Christmas adventure:
http://revivehope.typepad.com/revive_hope/2012/01/what-i-did-on-my-christmas-vacation.html

My full Hustle link:
http://my.imisfriendraising.com/personalPage.aspx?registrationID=294316&langPref=en-CA&Referrer=direct%2fnone

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Inspiration to 'Hope To Be' Transplant Recipients!

Hello Everyone!

I would like to celebrate my 38th anniversary as a kidney recipient ( Oct. 26th. 1973 ) by starting this blog.

To be sure - there are many thoughts and emotions that come along with such a milestone in time. My intent in bringing attention to my anniversary is to bring Hope to the many waiting for their transplant - or those recent recipients - Hope for a successful stable period of years with your new kidney!

I assure you, I realize, many people do not reach such time frames as 38 years with one kidney Xplant. ( Xplant will = 'Transplant' when used in my blog ) However, more and more are seeing longer periods of 'life' from their grafts. So, I suggest we all EXPECT the Best Possible Outcome AND WORK for it! I assure you...

...YOU are the Greatest FACTOR in the results You will have in KEEPING Your New Kidney!

Yes, there are many who contributed to your arrival to the status "Kidney Xplant Recipient"! It could not have happened without many people in your life actively investing in your outcome to this point. However, after all the Thank You's and Hugs and well deserved they are ... When these are through... The Future is mostly in your hands! You will wake up, alone, everyday. We all do - right? And with that Gift of Life inside you - YOU WILL FEEL DIFFERENT about EVERYTHING!

You must prepare mentally, as well as physically, for the challenge of CARING for Your Gift - 24/7 - all day... ...Every Day!

When I return I will discuss why a 'Positive Attitude' is NOT the only attitude for Success after your Xplant.

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Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need of a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at susygar@aol.com Thank You So Much!