I am thankful for the Cystic Fibrosis Foundation

By
Real Estate Agent with Keller Williams Capital Properties DC AB15253

Some of you know that my daughter, Lise Courtney, has cystic fibrosis.  I have been thankful since she was diagnosed at the age of two for the incredible care she has received at Johns Hopkins from Dr. Beryl Rosensteen, Dr. Pamela Zeitlan, Dr. Peter Mogayzel, and now, Dr. McDonald.  Since she is almost 24, I don't know Dr. McDonald like I knew her doctors as she grew up, but I know that she thinks the world of Dr. McDonald and is grateful for the care and support that she gets from all the doctors and staff there.  

In January, Lise Courtney was not feeling well.  Following her check up, Hopkins called to say that she had cultured a very nasty bacteria in her lungs and would have to be hospitalized for nearly a week to receive a round of intense IV antibiotics.  After she was released, she would still have to continue the IV antibiotics through a pic line for another two weeks. 

This was a huge shock to me.  I had convinced myself that she was always going to be healthy- after all we had avoided hospitalizations for all these years and I just assumed it would keep going.  

If it was a shock for me - it was even harder on Lise Courtney.  After all - she was the one going into the hospital.  And even though we were there for her, it is really hard to put myself in her position.  

Because of the danger of cross infection from one CF person to another, CF people are strongly discouraged from "hanging out" together.  Lung infections and bacterias that are annoying to you and me can be fatal to someone with CF.  That means that someone with CF does not really have a close friend or confidant who also has CF and knows exactly what that person is going through.  Even though Lise Courtney's cousin also has CF, they do not spend time together.  Her cousin is very close with the other cousins in the family, but Lise Courtney can't spend time with them when her CF cousin is there.  It is really hard to have CF, and it is lonely on top of it. 

To combat this the Cystic Fibrosis Foundation recently started Peer Connect, a peer/mentoring group to match people with CF so they will have a friend, a peer, or a mentor to talk to and share experiences.  Lise Courtney was one of the first round to be matched, right as she came out of the hospital.  The young woman with whom she was matched is perfect! She is a young woman who is several years older than Lise Courtney.  Stacy is recently married and lives in California. She went away to college and has travelled extensively.  She works and is active and she is now probably my daughter's best friend.  Lise Courtney went to California this fall to participate in an extreme hike with Stacy at Mammoth Lake.  Separated by 5 feet or more of fresh mountain air, they were able to be in each other's presence for the first time! 

The CF Foundation Peer Connect program has meant the world to my daughter.  This is a post that she wrote for the CF Foundation blog - and it was published today - 

Finally Finding Someone Who Gets It

                     by Lise Courtney d'Amico

Going from being pretty healthy for most of my life to being admitted to the hospital was scary and shocking. I decided to get help by asking for a peer mentor -- someone who also has cystic fibrosis. What I didn't expect was that I'd get amazing support and advice about CF and so much more.

I was completely terrified. In search of support, I turned to my friends and family. They were sympathetic and said everything they could to show their love, but (through no fault of their own) they could never fully understand what I was going through. I think that most CFers would agree that due to cross-contamination risks, cystic fibrosis can be an isolating disease. I felt completely alone and very scared.

I had no friends with CF that I could confide in, and I was not sure how to go about meeting other individuals with CF.

Somewhat magically as I was being discharged from the hospital, I received an email from the Cystic Fibrosis Foundation about CF Peer Connect, a new mentoring program where people with CF can virtually connect one-on-one. I filled out the online form and received a phone call to talk about what I wanted in a peer mentor. I explained that I was looking for a female in her 30s who had a similar health status to my own. In addition, I wanted someone who was employed so that we could speak about CF and career decisions, a topic in which I was particularly interested. About a week and a half later, I was matched with my mentor, Stacy!

During our first phone call, it was instantly apparent that Stacy and I were well-matched. We exchanged stories about our CF history and then moved on to telling each other about our careers, families, and hobbies. It was amazing how much we had in common. Our medical history was remarkably similar, and we both seemed to share the same outlook on life. At the end of the phone call, we scheduled another chat for the following week. I remember hanging up the phone and thinking “wow, this is the connection I have been missing!”

Lise-Courtney-And-Stacy-Peer-Connect-Featured-Rectangle
 

Over the course of the next few months, my relationship with Stacy became stronger -- beyond what I had initially expected from a peer mentor. What began as scheduled weekly phone calls turned into daily texts or calls. My bond with Stacy is not over how CF has negatively impacted our lives. In fact, we do not let that attitude enter our conversations. Instead, we have connected over our positive outlook on life and our shared drive to achieve. We have particularly bonded over our passion for fitness and the benefits it has for our health. Although we live across the country from each other, we joined the same gym in our individual states and we work out “together.” We are even in the process of training for a half marathon! Knowing that Stacy is heading to the gym and completing all of her treatments keeps me motivated to stay on top of my health and fitness.

The most incredible part of my experience with CF Peer Connect has been the transformation of my relationship with Stacy. When we first began speaking, I needed Stacy's advice and guidance on how to get through my illness more than anything. Stacy was able to give me strength during an extremely tough part of my life because she understood what I was facing more than anyone else. She could offer me advice from the standpoint of someone who had truly been in my shoes.

Now our relationship has grown into one of two friends mentoring each other, rather than one of a traditional mentor/mentee. Today I offer Stacy as much support and guidance as she offers me. I am incredibly thankful for every conversation that we share. I have gained the gift of a mentor, a friend, and a teammate, because Stacy and I are committed to winning the fight against CF together.

 
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Re-Blogged 1 time:

Re-Blogged By Re-Blogged At
  1. Roy Kelley 11/26/2017 02:00 AM
Topic:
ActiveRain Community
Tags:
cystic fibrosis foundation
peer connect
lise courtney damico

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Ambassador
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Jeff Dowler
Solutions Real Estate - Carlsbad, CA
The Southern California Relocation Dude - Carlsbad

Thank you for sharing your story, and your daughter’s, Lise. So much that I did not realize. Indeed there is much to be thankful for!

Jeff

Nov 13, 2017 09:28 PM #1
Rainmaker
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Endre Barath, Jr.
Berkshire Hathaway HomeServices - Beverly Hills, CA
Realtor - Los Angeles Home Sales 310.486.1002

Wow, Lise I had no idea about this part of your life, thank you for sharing, I am bookmarking this to re read/ comprehend, this is so powerful I had no idea about SF...indeed a lot to be thankful for, Endre

Nov 13, 2017 11:45 PM #2
Rainmaker
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James Dray
Fathom Realty AR LLC - Bentonville, AR
Exceptional Agents, Outstanding Results

Good morning Lise.

I remember you writing about her earlier.  I'm sure she is getting the best medical care available.  Just keep on going, things will work out

Nov 14, 2017 03:33 AM #3
Rainmaker
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Nina Hollander
RE/MAX Executive | Charlotte, NC - Charlotte, NC
Your Charlotte/Ballantyne/Waxhaw/Fort Mill Realtor

Hi Lise... reading your post sent chills up and down my back. It's inspiring and distressing at the same time. Your daughter will certainly be in my thoughts and prayers. Her post shows just what an incredible fighter and young lady she is.

Nov 14, 2017 03:46 AM #4
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Sheila Anderson
Referral Group Incorporated - East Brunswick, NJ
The Real Estate Whisperer Who Listens 732-715-1133

Good morning Lise. What an incredible story Your daughter's post moved me.

Nov 14, 2017 06:57 AM #5
Rainmaker
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Wayne and Jean Marie Zuhl
Hallmark Realtors - Clark, NJ
The Last Names You'll Ever Need in Real Estate

Beautiful story - thank you for sharing. 

Nov 19, 2017 05:49 AM #6
Rainmaker
4,398,389
Roy Kelley
Realty Group Referrals - Gaithersburg, MD
Roy and Dolores Kelley Photographs

Reading this story makes us very thankful for good health.

The CF Peer Connect is a great idea and looks like a wonderful resource for support.

I hope your daughter will be in good health for the holidays and the new year.

Nov 25, 2017 05:33 AM #7
Rainmaker
1,406,449
Lise Howe
Keller Williams Capital Properties - Washington, DC
Assoc. Broker and Attorney Licensed in DC, MD, VA,

Thanks Roy Kelley - on Monday she has an appointment at Hopkins for her quarterly check up so I have my fingers crossed! 

Nov 25, 2017 05:35 AM #8
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Debb Janes EcoBroker and Bernie Stea JD
ViewHomes of Clark County - Nature As Neighbors - Camas, WA
REALTORS® in Clark County, WA

Hi Lise, I didn't know about this prior to Roy's reblog this morning. I too send you, and your beautiful brave daughter, big prayers. We wish for great news from Hopkins tomorrow. 

Nov 26, 2017 09:01 AM #9
Rainmaker
816,997
Carol Williams
U.S.: I specialize in helping agents who have been in the business 2 years or less create a thriving business. - Wenatchee, WA
"Customized Mentoring & Marketing Services"

Hi Lise,
Thank you for sharing your very personal story.  Your daughter is amazing! 

Nov 26, 2017 09:40 AM #10
Rainmaker
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Patricia Feager
DFW FINE PROPERTIES - Southlake, TX
Selling Homes Changing Lives

Lise Howe - If it wasn't for ActiveRain, I wouldn't know you. If it wasn't for Roy Kelley's re-blog, I wouldn't know about your daughter Lise Courtney. If I didn't read your story, or her post for the CF Foundation blog, I never would have known the serious implications for CF and what it means to those who have this disease. But now, I know, and it troubles me to know that I know more about legal and illegal immigrants and people who feel they are unjustly treated in America, than I do about cystic fibrosis. 

Lise, honestly, I had no idea what people with CF are going through. Worst of all, it's not a silent disease, and I know the word, but knew nothing about the medical consequences, especially the isolation. Back in the 1980's I learned about HIV - it was all over the news! I don't hear about it much anymore, but I do know lots of money went into research and many celebrities made a case for how important it was to find a cure for HIV. But what about CF??????????

Today, I am more educated about CF and what the Cystic Fibrosis Foundation is doing just because of you and your daughter. Tenderly, I listened to Lise Courtney's every word and have compassion and gratitude that she found a mentor, someone who understands. Lise, I have a very strong feeling the two of them are going to do great things together to combat this awful disease. I am glad Peer Connect has opened up new doors for your daughter and I pray more will be done to help her and others to live a fuller life.

Nov 26, 2017 10:03 AM #11
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Lise Howe

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