Question for anyone who has lost someone with CF.

[cfRockerxx]

Hello everyone,the name is Morgan,im a 15 years old male and have Delta 508 Cystic Fibrosis (lucky Me) throughout life i've actually been doing well but when I hit my teenage years things went downhill. I've never smoked in my life so its nothing like that,but I went from going 3 years without having to go into the hospital where now i've been in twice for full 3 week tune-up's like 3 months apart and Thursday I went for an appointment and my functions were in the 60's and my small airways in the 40's when I used to always max out at 100's and 90's. I know alot of ppl with CF pass at an early age,and I just wanted to know for anyone thats lost someone close with CF wether it be brother or child or whatever....when they died was it sudden or had they battled for a long time? And did they seem at peace or in pain? It'd just be nice to know..I mean dont worry i'm very mature for my age so if anyone would talk about it in detail it would be nice...I mean im really starting to think that my time might be coming within a few years and i'd just like to know these things like were they healthy one minute and then gone the next? If someone doesnt want to talk about this and its gonna bum you out thats completely fine and if you dont want to discuss on here my Email is crazycracker937117@yahoo.com It'd be nice to know,thanks for listening.

Morgan

 

[anonymous]

Morgan,

Just because your health has seen a decline, does not mean the end is near....

Do you have a good CF team? Do they have you on the newest and best meds - like Zithromax, Colistin, Pulmo, TOBI, hypertonic solution? Do you do your chest physiotherapy? Do you exercise?

Also I can say it is quite common and normal to think the way you do when you start needing more tune ups...

Have your doctors talked about lung transplant? Have you thought about it?

I am now 42, post lung tx 8 years. My sister just died in April, due to ovarian cancer. She was 51, had a lung transplant in 2001, but dumb chance she got something that had nothing to do with lungs.

If you need any info, please ask. And talk to those doctors. You bring transplant up with them. It works.

Joanne Schum
luckylungsforjo@aol.com

 

[kybert]

my brother died [meaning the point of no return] over the course of a year. so i guess you could say thats pretty long. i dont think it was painful for him, just frustrating and sad. but his death was not sudden. he was very sick from the word go, so its not like he was fine one minute then in trouble the next. as joanne said just because your health has declined doesnt mean the end is near. you could hover at 60% for a very long time! you never know, you might even gain some lung function back! being in hospital several times a year isnt abormal either. i dont think its a very good indicator of how well you are because alot of people with fev1's over 80% and fighting fit are on iv's several times a year. yet there are some who have very low lung functions and dont go on iv's much at all.

 

[JazzysMom]

I have had times like that over the years. Basically this is what it comes down to. Everyone will have ups & downs in their health including the PFTs. The problem is when it stays there & doesnt move much (chronic) & there are times (like for me) that it is temporary (acute) & either you have an infection, a flareup of the airways like an allergy or asmtha attack. For me this year was the worst & even tho it was acute, it is taking a very long time to bounce back. The longer it takes, the harder it is. I would not worry too much at this point. Also remember that Cf is progressive & its the nature of the beast to gradually get worse over the years even with the best care. Also realize tho that anyone (with or without CF) become more "vulnerable" to things as they get older. It is natural to think of the worst because we know its always in the back of our minds.

 

[Bill]

Morgan,
My wife and I had 2 children, a daughter, Diane and a son, Bill Jr. They were both diagnosed with CF when Diane was about 3 and Bill about 1. At the time they were diagnosed, we were told that Bill had the worst case. Bill hardly had any problems at all for a long, long time. Played base ball, basket ball, foot ball, wrestled (?) and played golf (Still does). Diane it seemed was almost always sick, in and out of the hospital frequently. She did go out for and made cheer leader in 7th grade. This was the most athletic thing she was ever able to do. She graduated from high school and entered college, but had to drop out after only a couple of months. She died the following April at age 18. She knew she was dieing, but always had a smile on her face and I believe she died peacefully. My wife, Diane's boy friend and I were at her bedside when she died. I truely believe that if she had been born 30 or 40 years later, she would still be alive today. There are so many new drugs and different treatments that are available now, that weren't available in the 50s and 60s. All of which will be available to you! My son finally started down hill in his late 30s and early 40s. He even had to stop playing golf. Enter Zithromax!
During the first 9 months of 2003, he was in the hospital 3 times and was on home IVs 4 times. He was discharged from the hospital around October 5th and the next week he started Zithromax. Over the next 12 months, he was on home IVs one time and then one time again the next 12 months. He was able to start playing golf again and trys to play at least once a week. He will turn 46 the 1st of November and works full time. Think positively, take your meds religiously, exercise as much as possible and you may have many, many good years ahead. Never, never give up!
Bill

 

[trigueros79]

Hi Morgan!

I am a mom of a 4yr old girl with CF. I would just like to share alittle of my faith and what I have shared to my girls, (a 7, 6, 4 all girls)
My 7 yr old came home and she said someone told her that the CF Linda has can cause death, why they would say this to a 7 yr old, i dont know, probably ignorance and insensitivity to our situation.
But this forced me to deal with the issue, it is wise for you to question death, because as we all know death will come to us all, may I ask do you have apersonal relationship with Jesus Christ? I do and knowing Him has taken all fear of death and even the fear of the possibility of my daughter dying from CF. I would like to share some scripture from the Bible that has ministered to me in a mighty way.

For God so loved the world that He sent His only begotton son, that whosoever believes in Him shall not perish(die), but have everlasting life. John 3:16

In whose hand is the life of every living thing, and the breath of all mankind. Job 12:10

Also Psalm 139 is a chapter how the Lord knows us inside and out how he formed us in our mothers womb, knowing about DNA and how Cf can occur this scripture is powerful. It is a long chapter so I will not type on this forum but I encourage you Morgan to look over.

Your breath Morgan and my daughter Linda's breath is in His hand. Please know that there is hope in Jesus Christ, and I dont give you this scripture to prepare you for death but to prepare you for life, which was purchased through His blood. Do not lose hope, my daughter has had some rough times, even a lung collapse and she had to be put on a ventilater, her life was so close to death, that I was not prepared, because of Linda I have trusted in God and have committed my life to Him, and do you know what it has brought me? Peace...

Because of Him,
Patty Trigueros

 

[letsrockcfem]

Morgan,
I think I went through the same thing as you're going through. I never had a tune up until I was 13. Then throughout high school I had them about every 3-4 months for 3 weeks or so. My PFT's stay in the 60's and drop to the 40's when I'm sick. They've been in the 60's for 9-10 years now. Currently I go in twice a year or so for like 3-4 weeks at a time. We think that being in my high school could have caused more flare ups. It was older and you know schools breed crazy bacteria. I consider myself pretty healthy eventhough my numbers don't show it. For me, beating CF is 95% attitude and 5% meds and science stuff.
I feel very well most of the time now. I'm 23 play drums in a band work 40+hours a week and exercise on top of doing ALL of my CF meds. Numbers are different for all people but they shouldn't control your life..do you have any hobbies and do you exercise?? Your still young and seem like you've got a good head on your shoulders.. It's good to hear from other people but remember CF probably affects your body differently than others. If you spend time worrying about the worst your are wasting time thinking about the best. Keep rockin dude!!
Emily
lets_rock_cf@yahoo.com

 

[anonymous]

Bill, I just wanted to thank you for your post. It was a nice read. Something I really needed at this time. Thanks.

-Melanie.
aka rotandroll
CF CFRD

 

[anonymous]

Patty - Thank you for your post. God has brought me joy and peace as well through my children's diagnosis.

Bill - Thank you also for sharing with us about your son and daughter. It is encouraging to hear your perspective.

Sharon, mom of Sophia, 4 and Jack, 2 both with cf