I have CF and I lost my older brother from CF

[LookingforPeace]

Hi,

My brother passed away last September...

I didn't think that his passing would result with the development of an intense fear living with CF. Before he died, he was always the one to calm me down and rationalize my fears. Now that he is gone, I have no one to do this for me. Every one thinks I over analyze and create my own health issues.

While I have sought out support groups for the bereaved... I cannot connect to anyone as no one has this extra component of grief - having the disease that your loved on has died from...

I decided I would come online and seek support this way... I am desperately seeking someone who has lost a sibling with Cystic Fibrosis... someone who is also living with Cystic Fibrosis.

And, of course, any words of wisdom and strength to help me find myself again in this world that has stripped me of my innocence.

 

[Dreamerboi]

LookingforPeace,
Im sorry I cant relate to your situation. I have a younger sister who has cystic fibrosis and is my world. I cant imagine what you are going through, but I will tell you this. You feel alone, and I wont let you be. If you need to talk, anytime email me devotionsdesign@gmail.com. I didnt know your brother but he sounded like a great guy to care for you that way. So please, if you need anything email me.

Dev

 

[beleache]

I am so sorry for your loss <img src="i/expressions/face-icon-small-sad.gif" border="0"> There are ppl here on CF.com who have CF & have lost a sibling w/ CF.
My sister Linda & I were late diagnosis @ 50 (her) & 44 (me) .. Her lungs were worse than mine. As a matter of fact, before our dx when my cough started sounding more like hers & I had a bleed, I was convinced whatever was wrong w/ her was what was wrong w/ me, & it turned out that I was right.. Sadly,Linda passed the year we were dxd from breast cancer & so since she didn't pass from CF I guess I didn't have those same fears that you have experienced. I do however have fear in general of dying. Sometimes worse than others.
I think many ppl w/ a life threatening disease experience this.. I pray that in time the pain eases a bit. PM me if you would like to chat about anything.
{{{hugs}}} joni

 

[Mistyjo]

I don't know what it's like to lose a sibling especially when you both have the same disease but I do know what it's like to lose both of my parents. My mom had pulmonary fibrosis and chronic pneumonia. I watched them both die from respiratory distress. I know it's not the same but just wanted to offer sympathy. (((((hugs)))))

 

[auntiepam]

MistyJo- I just lost my dad to IPF. Broke my heart. Lost my mom several years ago. It's a terrible disease.

 

[auntiepam]

LookingforPeace- One day at a time! My Dad's twin brother is also in lates stages of IPF. Know that you are not alone, and that your brother wants you to live and enjoy every single day.

 

[CrisDopher]

I also lost my dad to IPF less than two years ago. The pain of watching him deteriorate, go on oxygen, deteriorate more, and eventually die in ICU of a pulmonary embolism is still quite fresh. And of course I've watched many of my CF friends pass as well.

But this is the thing: their road is not my road. Your road, LFP, is not your brother's road. We may all have the same atlast published by the same writer, but at every fork in every road, we each of us make different choices. And thus we all travel a different path. They say "all roads lead to Rome" and surely this is true for those of us with CF. But some routes are far from direct or short. Most routes have many, many hills and valleys along the way.

I hope, LFP, that you know that your story is, and will continue to be, unique. If you find your strength flagging, think of your brother's best and most supportive advice, and keep walking YOUR road.

And, of course, we're always here to listen.

Cris Dopher
40

 

[LookingforPeace]

Wow,

I cannot express enough gratitude for all of your replies...

Dreamerboi: Thank you for offering your support... How is your sister doing?

BelEAche: My brother and I were diagnosed "later" as well. I strongly believe that if he was not diagnosed when he was... that I may well have lived a long life before my own diagnosis. How did your diagnosis come about? I can't believe how late it occurred... And you have children? That gives me hope!... I am worried I may not be able to... You also had breast cancer?... Wow... I would love to hear more about your experience if you wouldnt mind sharing.

Mistyjo: I am sorry to hear about your parents... And I can imagine how hard it was to watch them struggle for every breath... Do you have Cystic Fibrosis? And THANK you for your sympathy... I really do "feel" it

auntiepam: My brother and I were very very very close.. I have other siblings but him and I were together my entire life... I keep trying to imagine things that he would tell me... things he would say to make me feel better... (Love that I have his facebook page to remind me of his attitude!)... I KNOW he wants me to be strong and happy... So I am seeking it and using every method I can to go back to "normal"... or as close to normal as I can. Im very happy I have some people to relate to now...

CrisDopher: The word "deteriorate"... only people who have witnessed someone they love deteriorate can really understand that. The word alone can make me cry. And you're absolutely correct... One of the things that I continue to remind myself of is that my brother is a separate entity from me... he is a part of me but is separate from me... and as much as I love him, I need to understand that this is my journey. And his death is part of what makes me me... I am in the process of reading some books that talk more about this sort of belief system...

 

[marie0125]

Hello looking for Peace,
I can sort of relate to how you feel. I am an adult with CF and, I lost a son at 4 months to CF. He passed from extensive cf gi issues. I have also lost my dad to a massive heart attack from smoking and, my mom to ovarian cancer. I took care of my mom and was very close to her. My mom was an awesome example of a Christian lady her entire life. I still miss my mom and dad and, I know they are in heaven. I will see them in heaven someday. My brother and I were raised in a Christian home. My faith in God is what gets me thru each day. I would recommend trying a few churches to see if you can find one you like. You can also talk to pastors at churches for free. They might be able to talk to you about your brother's passing , heaven etc. I read a book called "Heaven is for Real" that you might find comforting. The book is written by the dad of a 4 year old who died, went to heaven and then came back to earth. It is an incredible book. Having faith in God and praying is how I deal with all the tough things in life.

 

[jdmd]

LFP: I have lost both a sister (Kathy) and a brother (Tom) to CF. I am the last of the three of seven kids in our family with CF. I know exactly what you are feeling. It is sad and scary and it probably seems like no one else can possibly understand.
I do. There is no describing the feeling that you have at the funeral.
My siblings were always sicker than I was, but we nonetheless share the same genes, and I always wonder when my luck will end.
It is not all about genes. This I know to be true. We also all must experience our own paths. It may not make any sense that we are still here, but we are.
I live every day in honor of Kathy and Tom. I know they are with me in whatever I do. They yell at me if I so something stupid. I try to do all that I can to live now, as well as I can. And I know that when that is over, K and T are there to greet me with a high five (ten?).
It is frightening, but you can soldier on. We are all here to help. Reach out (as you have). and if you want to talk privately, message me.

 

[pencf]

My condolences for your loss. Loosing a sibling for any reason (especially if you were close) is devastating.
I have a child with CF. I can imagin the fears to be similar, as if I had CF. Recently her disease has gotten worse, and the worry/fear meter went into over drive. I am sure this forum will bring in your path folks who havewalked similar journies, and it is my prayer that their wisdom and support will help carry you past the fear.
I would also recommend you seek professional help and maybe, if deemed necessary, go on medications to help with anxiety. It does help.
My only grain of wisdom is this. No One is Promised Tomorrow, Live Today to the Fullest!
I was always a planner, an optimist ALWAYS, always looking ahead (to a fault) and now, after a very fear filled Fall with our daughter and OUR CF, I now see that every day is a gift and to just let THISday be the best day you have!!!! When I stay in today, it is a day of HOPE!!!!
"The only thing stronger then FEAR is HOPE" ~The Hunger Games

God Bless!

 

[toria]

Odd that today I read this post. My brother died 15 years ago today. There are so many emotions. For the rest of the family they lost a love one and they grieve. For me so much more. He was the pioneer who made the trail. The one who gave me advice on what to do and what not to do. My brother, Brian, was 15 years older so it was like a glimpse of my future and my own demise. I watched everything even his last breath and couldn't help but think that would be how I died. I cherished how much he accomplished, but I am also sad how much more he had to do. My family fell apart after his death. We don't even speak to each other. So complicated why. The reality is you probably won't find anyone else that can relate and can give you advice that has the value your brother gave you. Because he was special. You can only move forward and hear him say, " Live life. "

Time helps. There will be those times of the year or a song that will bring you an overwhelming sadness. Elton John's, "Daniel" song unleashes tears for me. You can hear others talk about how great he was, but you share a connection much deeper they won't understand. My brother wrote me a letter that my mother gave me when he died. I can't tell you what a gift that was. I still read it and cry and cry. I am crying now thinking about it. I read it once a year around this time even though I used to read it monthly. I also wrote in a journal about his last moments. I read that too. The room was filled with everyone who loved him so deeply. They dropped everything and came from all parts of the country. He was 42 years old. Older than the average CFer, but still too young. He was LOVED. He took time for others especially in his last 5 years when he was unable to work anymore. I have officially lived longer than him now.

It is ok to cry and ok to be scared. Trust me I am scared too. Death is certain for all of us. Your course won't be exactly the same. There are new medicines, different exposures to pathogens. I'm not sure how old you are, but as the years go on you learn that life is taken away from even healthy people. All you can do is make a difference, contribute to your community and help others. I wish you well. Keep his memory close, make decisions to protect your health, and enjoy every opportunity to see something new, meet new people, and love even the quiet moments. Time will help. What you are feeling at this point is normal. It will get better.

 

[moxie1]

I haven't lost a silbing but I did lose my cousin from cf. He was 8 months younger than me and 1 of only 2 cousins.
He died about 15 years ago. I had just gotten married and was thinking about my future when he passed away. It was hard and I was scared, but like everyone else says you are not him. Everyone has a completely different course.
Now I am almost 37 years old. I am happily married, I have a 3 year old adopted son and am in the process of adopting my second child. My lung function has remained stable for over 10 years and I have lived over 15 years with cepacia.
Do not let fear dictate your life. Easier said than done, I know. Here speaks a girl who likes to worry, but honestly, your days are dictated by one thing only.....Almighty God. Worrying about it isn't going to change a thing and is only going to keep you from living life to its fullest!

 

[LittleLab4CF]

I join with the many who have CF and lost a loved one also with CF. I am 62, being born in 1950, for reasons I will never know, I was diagnosed at the age of 51. My father was diagnosed post-mortem. From a medical standoint, I was a junior version of my father. We both were treated for all the CF garbage from the sinuses down. I had no desire to share my father's medical issues. One of my first memories was my father giving me a tiny measure of some "chalk soup" before taking a much larger dose himself. As I became more aware of what was or wasn't working right at a certain time, I would take the '60's medications from ulcers to pneumonia as needed and watched as my father struggled to deal in kind. From my symptoms I knew, my father's version of the same problem, impacted him much more than I. For ten years before he died, I sensed his engine was running hot, and could not last.

At the time my father died, in a scant month he lost one third of his already low body wieght. He died from starvation, in the U.S. in 1970. Something then, still remains incredible to me that this could happen. I was never given any clues that I was sick as far as my parents choice of raising my older bother, me and my younger sister. My all too frequent visits to the doctor or middle of the night runs to the hospital were taken very much in stride. Besides, my brother was accident prone and my sister probably holds some record for the croup. In short, I wasn't the only person rushed to the hospital for a few days in a humid oxygen tent.

As soon as I realized that little difference existed in my life line and my fathers, soon to be short life, I felt everyday had to be drawn in, like a deep breath. It didn't do my sleep any good, because I had hooked up with day friends and activities and always, it seems, I spent the night with my night owls. The night owls often took the form of transmitter maintainance engineers, or being tolerated by the local pathologist when I came in nights he was called in. Maybe I was running from my mortality, I would like to think, I had decided to run full on into life and suck everything from it, avoiding life doing the same to me. I fully understand your fear of being unceremoneousely snatched from your mortal coil, from a genetic disease that has evaded a cure fo 10,000 years.

You didn't indicate if your presentation of CF is similar to your brother's, but since he has quieted years of fears and concerns, you may see too much similarity for this to be an overreaction. This is not a time to lose heart, and though you will grieve to some degree, for the rest of your life, he is not your future. Right now is a very hopeful time for people with CF. In the last year, a new class of genetic based medication is helping a few CFers. Once developments reach a quantifiable, repeatable level, it often a very short path for specialized treatment for each mutation or mutation combination. You may be that first kid of the block with a new lease on life. Just imagine!

 

[skydiverchic]

I know where you are coming from. I have an older brother Anthony who die in 2002 from cf and it crashed my world. I tried to talk to people about it but they couldn't understand the component of having the same disease that i watched kill my brother. Then in 2008 my oldest brother Wesley died from cf. It was devestating. But i have been relying on God to get me through the tough times and i am making it through. I have supportive friends who let me vent when I need to and that helps. Just know that there is light at the end of the tunnel even though it may not seem so right now.