My Daughter Has Cystic Fibrosis

By
Real Estate Agent with Keller Williams Capital Properties DC AB15253

My daughter was diagnosed with cystic fibrosis at the age of two.  She is now twenty three and I am thankful for every day that I have her in my life.  She leads a very full life.  She graduated from Boston College last year and now works a very full and demanding job as an economic consultant with Charles River Associates in Washington. 

Cystic Fibrosis Explained

Cystic fibrosis is a serious genetic condition that causes severe damage to the respiratory and digestive systems. This damage often results from the build up of thick sticky mucus in the lungs, pancrease, liver and intestines.

Cystic fibrosis affects the cells that produce perspiration, mucus and digestive enzymes.  Normally these secreted fluids are thin and smooth like olive oil.  They lubricate various organs and tissues, preventing them from getting too dry or infected. In people with cystic fibrosis, however, a faulty gene causes the fluids to become thick and sticky.  Instead of acting as a lubricant, the fluids clog the ducts, tubes, and passageways in the body. This can lead to life-threatening problems, including ifections, respiratory failure and malnutrition.  The average life span of someone with cystic fibrosis is now about 40 years, up significantly from the two years back in the 1960's. 

What My Daughter Is Doing Now

When my daughter was in school I did not share the fact that she had cystic fibrosis with many people.  I didn't want to be that noble parent with the sick child and I didn't want her to be that sick child whom people regarded with limiting concern or sympathy.  I did not want her to rely on her medical condition as an excuse for not trying.  

She has lived a very active life.  In high school she played field hockey and ice hockey.  She is adventurous and kind, sweet and smart.   She went off to college fairly far from home and then came home after graduation to live with a wonderful classmate from elementary school through high school in a fantastic apartment in Logan Circle in DC.

Then this winter while my dog was in the intensive care unit with acute pancreatitis, Lise Courtney called me to say that Hopkins had called her to say that she had cultured B. Cepacia in her lungs  at a recent check up and that she had to go into the hospital the next day.  

This was her first hospitalization.  It seemed like such a defeat because I really had felt that we had been able to keep the germs at bay and that maybe it would always be so.  When she had to be hospitalized, I felt like the Maginot line had been breached - and I realized that her health defenses were no more real than the Maginot line.   Her hospitalization was a real eye opener for me.  She really does have cystic fibrosis (not that I ever doubted it).   

Fortunately she was only in the hospital for about a week.  She came home with a pic line in her arm for another two weeks so that she could continue to receive massive antiobiotic infusions.  Once she got the pic line out, she had a six inch long blood clot in her arm.  It was not a good month.  She has been able to return to work full time. She works out daily at Orange Theory.  She has a mentor, Stacy, who is another young woman with cystic fibrosis who lives in California and they take the same exercise class together on different sides of the coast.   People with cystic fibrosis can't be physically close to each other because of the fear of cross infection, so Lise Courtney generally only gets to talk to Stacy on the phone. 

Lise Courtney is also active now with the DC Chapter of the Cystic Fibrosis Foundation.  We participated in a fund raising walk in Bethesda in May and will participate in one on the mall in June.  She is raising money for the Foundation  to participate in a 70 mile hike in California near Mammoth Lake.  She is very excited that Stacy will also be on this hike, separated by volumes of fresh air! 

Tomorrow night, my daughter is being honored by the DC Chapter of the CF Foundation as a young adult member of the Washington Finest.  This collection of young professionals is going to receive training for 16 weeks to perfect their fundraising skills.  She is the only member of the group with cystic fibrosis.  

Why Am I Sharing This?

Good question.  I am sharing my daughter's story because the famed sports writer Frank Deford died today and he was the father of a daughter, Alex,  who died from CF when she was 8 years old.  Frank Deford was the president of the Cystic Fibrosis Foundation for sixteen years and brought a lot of exposure to CF with his book about his daughter and her death from CF.  I know how lucky I am that my daughter has had the benefit of so much research funded by the Cystic Fibrosis Foundation.

I also am writing about my daughter because I need to be more open about her medical condition so that she feels comfortable talking about the challenges she is facing each day.  We need to acknowledge her medical condition to her and support her as she deals with her treatments and medications.  I also need to learn how to ask for contributions to the Cystic Fibrosis Foundation to support the incredibly important work that they do.  

My take away from this is that many people face challenges in their lives and most don't share those challenges with others.  This makes it even harder to get through the day.... so if you know someone is facing a challenge or their child is suffering from some illness or condition, ask about them.  Let your friends know that they are free to vent or lean on you.  If they are fundraising, give a few dollars - five dollars is a powerful message of support to someone who feels like they are going it alone.  And if you can't give a few dollars - but sure to give a hug.  

 

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Rainmaker
836,048
Nick Vandekar, 610-203-4543
Long & Foster Real Estate Inc 610-225-7400 - Devon, PA
Tredyffrin Easttown Realtor, Philly Main Line

Lise this is a very hard disease, we know and have known several people with this disease. Trudy is actually having breakfast today with a mother of a daughter who has this as well. Advances have been made, but these are all people who live every day knowing that their lives need to be lived fully. Thanks for sharing this.

Jun 01, 2017 05:07 AM #30
Rainmaker
572,762
Nathan Gesner
American West Realty and Management - Cody, WY
Broker / Property Manager

Lise Howe thank you for sharing your story with us. It must be a difficult thing to talk about and even more difficult to live with. I think you've done an amazing job with your daughter and I pray you have many, many years to share with each other.

Jun 01, 2017 05:16 AM #31
Rainmaker
2,513,898
Richie Alan Naggar
people first...then business Ran Right Realty - Riverside, CA
agent & author

I am always reminded to be mindful of everyone as we all carry crosses to bear

Jun 01, 2017 06:04 AM #32
Ambassador
922,297
Frank Rubi
Frank Rubi Real Estate, LLC - Metairie, LA
FrankRubiRealEstate.com

Lise, your daughter, is unyielding. Both of you are. I have worked for years with CF kids as patients. You may know that in the past I was a Respiratory Therapist. It is good to know the life expectations are longer now. Take each day and make it great. You and your daughter are in my thoughts. 

Jun 01, 2017 10:30 AM #33
Rainmaker
1,250,453
Gene Mundt, IL/WI Mortgage Originator - FHA/VA/Conv/Jumbo/Portfolio/Refi
NMLS #216987, IL Lic. 031.0006220, WI Licensed. APMC NMLS #175656 - New Lenox, IL
708.921.6331 - 40+ yrs experience

Hard story to hear, Lise Howe ... and I'm sure a much harder one to write and live.  My thoughts remain with you and your daughter.  Please continue to share her story with us ...

Gene

Jun 01, 2017 10:53 AM #34
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Patricia Kennedy
RLAH Real Estate - Washington, DC
Home in the Capital

Lise, your daughter's story is certainly an inspiration!  I am often amazed at what physical challenges so many people overcome, and Lise Courtney is one of them.  You must be very proud of her - and big hugs!

Jun 01, 2017 11:08 AM #35
Rainmaker
1,504,928
Kat Palmiotti
406-270-3667, kat@thehousekat.com, Broker, Blackstone Realty Group - brokered by eXp Realty - Kalispell, MT
The House Kat

Thank you for sharing. Your daughter is a wonderful person, and with you as her role model, that's no surprise.  It's okay to share, and to fundraise, and to do whatever else you want to do in order to help your daughter and yourself. Hugs to you.

Jun 01, 2017 06:19 PM #36
Rainer
126,519
Stavrula "Sam" Crafa, RNC,GRI, CDPE, PSA
Future Home Realty - Seminole, FL
Providing the integrity and service you deserve.

You and your daughter are so brave to share your story as well you should. It's hard. I know it was hard to tell people that I had cancer. Took me a long time before I was comfortable telling people. Most were very compassionate and offered to help. Some criticized me for the decisions I made, which of course had nothing to do with them. And some treated me like I was contagious. In the end, I was glad I was able to eventually be open about it mainly because I receive much more support and kindness from people I didn't even know. The kindness of strangers really helped me get through the tough time. Happy to say I'm a 5 yr survivor. I pray that you and your daughter receive that same compassion and kindness. 

Jun 01, 2017 07:27 PM #37
Rainmaker
1,761,744
Lise Howe
Keller Williams Capital Properties - Washington, DC
Assoc. Broker in DC, MD, VA and attorney in DC

Hi Stavrula "Sam" Crafa, RNC, GRI, CDPE - I completely understand about the cancer - I still have trouble saying the "M" word or the "C" word. My daughter helped me when I had to go through that experience -

Jun 01, 2017 08:28 PM #38
Rainer
126,261
Cristina Salcedo
REMAX Champions - Riverside, CA
Corona, Riverside Realtor

Lisa Thank you for sharing your story.  I can totally relate.  My son was diagnosed with Beckers Muscular Dystrophy when he was 13 and he is now 30 with a life expectancy of 40.  When he gets sick or one of his symptoms gets worse he and I are suddenly reminded of the reality of his condition.  A lot of people do not know he has MD.  They just think he is a little weird because of the way he walks, stands, carries himself.  You are a brave woman and so is your daughter.  You help me a lot with your story.  Thank you again.

Jun 01, 2017 09:05 PM #39
Ambassador
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Praful Thakkar
LAER Realty Partners - Andover, MA
Andover, MA: Andover Luxury Homes For Sale

Lise Howe - I can simply say, you are a SuperMom! Hats off to you.  

 

Jun 01, 2017 09:22 PM #40
Rainmaker
269,248
Susan McCall, Independent Listing and Buyer Agent
Compass Realty Solutions - Portland, OR
Bringing buyers and sellers together!

Thank you for sharing your story.  I was deeply moved by your daughter and her successes.  We all have something to live with and conquer and the day to day struggle  that you told so elequently is inspiring to me.

Jun 02, 2017 12:00 AM #41
Rainmaker
5,616,899
Roy Kelley
Realty Group Referrals - Gaithersburg, MD

Congratulations on your feature recognition. Thank you very much for sharing this story.

Jun 02, 2017 04:31 AM #42
Rainmaker
1,529,949
Gary L. Waters Broker Associate, Bucci Realty
Bucci Realty, Inc. - Melbourne, FL
Fifteen Years Experience in Brevard County

Cystic fibrosis is a challenge. My cousin lived with it - the challenges and the normalcy for 45 plus years!

Jun 02, 2017 06:06 AM #43
Rainmaker
401,573
John Wiley
Fort Myers, FL
Lee County, FL, ECO Broker, GRI, SRES,GREEN,PSA

Lise Howe Thank you for being so open about you and your daughters journey.

It is obvious that you care not only about your remarkable daughter but you want to raise awareness of cystic fibrosis so others can be helped.

Best wishes

Jun 02, 2017 06:12 AM #44
Ambassador
1,689,404
Joe Pryor
The Virtual Real Estate Team - Oklahoma City, OK
REALTOR® - Oklahoma Investment Properties

One of the benefits of being successful is that you can afford to be generous. I do a lot with cancer since I am a survivor but a disease like this needs to be cured and I will see what is happening in Oklahoma City.

Jun 02, 2017 07:01 AM #45
Rainmaker
3,313,834
Nina Hollander
Coldwell Banker Residential Brokerage - Charlotte, NC
Your Charlotte/Ballantyne/Waxhaw/Fort Mill Realtor

Hi Lise... I had no idea... thanks for sharing your story. So many illnesses today are not an automatic "death sentence" the way they were decades ago. You and your daughter are true survivors and I have no doubt you will continue to survive with much class and dignity going forward.

Jun 02, 2017 07:32 AM #46
Rainmaker
1,761,744
Lise Howe
Keller Williams Capital Properties - Washington, DC
Assoc. Broker in DC, MD, VA and attorney in DC

KATRIN HERRLING - You are remarkable for your bad taste. 

Jun 02, 2017 09:06 AM #48
Rainmaker
1,761,744
Lise Howe
Keller Williams Capital Properties - Washington, DC
Assoc. Broker in DC, MD, VA and attorney in DC

Gary L. Waters, Broker Owner, Waters Realty of Brevard, LLC  - thank you for sharing that with me. I believe that denial is a great place to live - and it isn't just a river in Africa - so until something comes up and bites me in the face I am expecting the best for my daughter.  I am glad that your cousin saw 45 (I think that was the gist of your comment - and forgive me please if I was wrong!) 

Jun 02, 2017 09:46 AM #49
Rainmaker
993,980
Jan Green
Value Added Service, 602-620-2699 - Scottsdale, AZ
HomeSmart Elite Group, REALTOR®, EcoBroker, GREEN

How lucky you make me feel that I've never had to face that type of challenge. Only one of may daughters has faced challenges, scoliosis and ensuing spinal fusion, IBS, and acid reflux.  I thought that was a lot for one kid to endure as a child and now an adult.  At least those conditions are manageable.  Kids that have such a serious illness like yours are to be commended, as well as you her parent.  Without your vocal efforts, CF might not have received as many donations for more research.  Good for you and I'm keeping you guys in my prayers!

Jun 09, 2017 04:02 PM #50
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Lise Howe

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