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Cystic Fibrosis Loss

Loss of a loved one due to Cystic Fibrosis

Members: 25
Latest Conversations: Jun 12, 2016

Discussion Forum

Grief

Started by Cathy S. Ross Jun 8, 2016. 0 Replies

I am sorry I posted than left. I basically am trying to exist. I miss mike soo much. I cannot believe he has benn gone for 6 months.All my normal spring activities no longer have purpose or joy. I…Continue

Day to Day Coping

Started by Christine Linde. Last reply by Linda Roggli Jan 21, 2015. 1 Reply

I never thought this would be so hard.  I was married to David for over half of his life.  When we married I asked for 5 years because I knew how sick he was.  At the 5 year mark, he had his first…Continue

I JUST lost my son to CF 9 days ago on December 13th, 2912..

Started by Michelle Kennell. Last reply by teresa magee Jan 14, 2015. 3 Replies

 My son Nick was diagnosed at 8 months old with cystic Fibrosis. Last year he had the best year of his life. He was healthy and happy. He got engaged to a beautiful girl, Ashli, and was off oxygen. I…Continue

Cystic fibrosis

Started by Alice Tsakonas Oct 1, 2014. 0 Replies

I lost my two daughters Christina and Jennifer October 1, 2008 and June 18, 2009. Today is 6 years for Christina. I miss them very much and feel shattered and broken. Most people including my husband…Continue

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Comment by missy inman on June 8, 2016 at 10:48am
I lost my daughter in March of this year she was 18 years old. She received a double lung transplant at age 9 from Cystic Fibrosis. Everything was going quite well until she got pneumonia and the flu and just couldn't get over it and that's when we lost the light in our world. I dwell on the future for my other daughter she also has Cystic Fibrosis and I fear her faite will be the same as her big sister. I am lost completely broken and feel like my heart has been ripped out. I feel like I have no hope in life and there is no happiness in me anymore only anger that I'm still here and my beautiful daughter isnt.
Comment by Trevor Gravel on June 7, 2016 at 9:46pm
I just lost my beautiful wife, Laura, to Cystic Fibrosis on April 27,2016. Laura was just 39yrs old and five weeks away from her 40th birthday. We were just six months into our new marriage. We Wed on October 29.2015.

I have lost the love of my life and my best friend. This was the first time Laura had been hospitalized for a CF complication, but being a Cepecia sufferer that's all it took. Within two weeks this horrible disease took her from me forever. I feel lost, confused and not sure how to function without her in my life. I miss her every minute of every day.
Comment by Cathy S. Ross on April 4, 2016 at 10:06pm
I lost my son, age 32, on nov 21 after a month long battle with pneumonia in his bad lung. He alo had liver disease, kidney des ease, epilepsy and type one diabetes. This is a horrible time for your family and not sure I have any advice except go day to day, don't plan as you never know how you will be that day. Take this time on you own terms no one should tell you what to do or how to behave . Love to talk aff line
Cathy
Mother of twins with cf one now 32 the other pasted
Cathy.s.ross@dartmouth.edu
Comment by Cathy S. Ross on April 4, 2016 at 10:06pm
I lost my son, age 32, on nov 21 after a month long battle with pneumonia in his bad lung. He alo had liver disease, kidney des ease, epilepsy and type one diabetes. This is a horrible time for your family and not sure I have any advice except go day to day, don't plan as you never know how you will be that day. Take this time on you own terms no one should tell you what to do or how to behave . Love to talk aff line
Cathy
Mother of twins with cf one now 32 the other pasted
Cathy.s.ross@dartmouth.edu
Comment by Christopher Vokaty on April 4, 2016 at 1:58pm

I lost my amazing brother Jonathan to Cystic Fibrosis on March 18th 2016. Jon was only 34 years old, a lung and kidney recipient. Jon was loved by so many people, because he had such a kind heart, a warm embrace I have not seen duplicated. I miss him so much, its hard not having him around. About year prior to his passing, I donated my kidney to him, he was so do so well for a awhile but he got sick with a lung infection which he was not able to recover from. I'd love to connect with others who know my pain and wish to comfort each other. 

Comment by dream moon on January 9, 2016 at 5:06pm

ok

him dream moon 

not my real na juts a screan mame coz spam so on harus us iv lernt a lot off otrh sits i hav

my dad had copd emtseam ort liungs codnsions his sir had bad lngs 2 

sum of thm kids had it 2 wen iwz 14/15 thy saed it wz asmer 4 me me me thn igot in 2 my 30s say it wz copd my dad had full copd 

he had a strok getin brt he wz bt he  died on 3.3 2012 220am 

his lings wear comlty gon wish kild him

thn famly frinds dropt lk flys wish is not funny in 2012 

thn 2013 it wnt non stopp lung prons mts of thm died of

lk in 2014  thn 2015 

its 2016 im drdin it i am

im sorry if iv bean rablin rantin on lk a mad women or so on its 1 of thm days i nead 2 rant 

so sorry if iv ofend anyy 1 or so on

Comment by dream moon on January 9, 2016 at 4:59pm

on my dads sid wev all gt sum knd of lung d we do copd wz of bad 1 my dad had it iv got it i no smokin maks i wrse wish iv bean doin coz f loss so mush loss nt slf pity bt loss

Comment by teresa magee on January 6, 2015 at 8:22pm

My beautiful baby boy, Shannon passed away almost a year ago.  He was 37 years old.  Shannon was diagnosed with Cystic Fibrosis when he was just 6 weeks old.  He loved life so much and he fought hard to live each and every day.  He wanted to leave his mark on the world and to never be forgotten.  Shannon wanted to fall in love, get married, and have a family.  He was cheated out of so much in life.  I miss him beyond belief and each day only gets worse. 

Comment by T.C. Goodwin on June 14, 2014 at 6:01am

Recently, I learned that a spiritual sister of mine has had cystic fibrosis since the age of two. This caused her severe respiratory and digestive problems. She even had to take some" 36 different pills". Looking forward to the day when no one will say I'm sick (Isaiah 33:24)

Comment by Kathy Thomas on September 12, 2011 at 12:50am

I understand how you feel.  Our son passed November, 2008 almost 3 years ago from cystic fibrosis.  You would think that it gets better but it doesn't.  You want someone to know how you feel but aren't sure they can.  I will talk to anyone and everyone who will listen to me tell about my boy.  My heart aches for him.  I miss him so much.  It's just so hard living without him.  My heart is so saddened by all of the losses from this horrible disease and what it does to the loved ones who have been left behind.  Perhaps we can help each other with our grief. 

 

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