what would you do??

[EmilysMini]

I agree. i can see why someone would want to terminate, and why they wouldnt. it is a persons choice. however there is one thing i dont agree with. and thats that god doesnt put more on people than they are strong enough for. now i dont even believe in god, but for the sake of argument lets say i do. one of the leading causes of death in teenagers is suicide, and is probably a rather big problem in adults. if god didnt put more on people than he thought they were capable of dealing with, then suicide would be non existant. no one would need to kill themselves because they would be able to handle everything that comes their way.

 

[anonymous]

They are able to handle it they just didn't choose an option that was out there. There's ALWAYS another choice to be made. Whether youopt on that choice is your business.

 

[anonymous]

I am a 24 year old CFer...and I now have a 4 year old son. My partner was tested and it was determined that the chances of our child having CF were slim to none. I watched what my brother went through before he passed away and I think back to what I have gone through. I honestly think that if my partner was a carrier, I would have pursued other options. I remember growing up and the hospitalizations, the pain, emotions...and I wouldn't wish that on anyone....let alone, watch my child go through it and have to watch it.
Leeanne w/CF

 

[anonymous]

If I had known I was a carrier of the CF gene, I would have either not had children, or would have had a child from a Non Carrier. Now knowing and after the fact.. I would have terminated the pregnancy. There would have been no pain for all involved. The pain and torcher I see him go through, as well as my other children in living it through, the thought of burying a child while watching everyone you love cry with an eternal torcherous tear.... One doesn't miss or hurt for something they never new.. we cry because we loved helplessly. ... A man without ears never misses hearing. We don't miss what we never had.. it's only when we have something and loose it we miss it. To loose a precious loved one is an eternal scar that never heals, it is a tear that never dries up. But now that life has begun, and has become you, we will fight with every fiber of our beings to keep you here!

 

[anonymous]

I have lost so many loved ones over the years, I have felt pain in my heart so deep I couldn't breathe, the mere thought of losing my son literally makes vomit. However, I love every single scar and blemish in my heart caused by the pain of losing someone. I would rather die with a scarred, damaged, shattered, and torn heart, than die with an empty, cold, and untouched heart. I can understand how someone would avoid pain inducing experiences and relationships throughout their life--I can understand how someone wouldn't want to take care of a sick child. I personally am willing and strong enough to deal with this pain, I have a son with CF and want to have another. I feel terrible that your children are suffering, it is very difficult. However, I am sickened by this "if you don't have it, you don't miss it" attitude. It's a very shallow and unfullfilled life when you "dispose" of something that could turn out to be the most amazing gift ever. my son suffers, I suffer, my family suffers, and friends suffer: yet none of us would ever chose to not have known him at all. Not to sound to cliche', but it is better to have loved and lost than to never have loved at all. I do think it is a very personal decision, I do respect the opinions of those who chose not to have more children. My issue is with those who are scared to open their heart and love, even if it means getting hurt later in life. I hate to see my son suffer, it is gut wrenching, but since having him I have a heart and life that has is more fullfilling than anything in the empty heart I had before I he was born. I am grateful for every pain in life and in the future because it means life and those around me have been changed forever by this beautful creature given to me.

 

[anonymous]

to the previous poster, in an attempt to write a moralistic post, in which you declared yourself "sickened" you have actually written the most selfish post ive read on this thread!!!!!
all you seemed to say is "i can cope with a sick child, i want another"

yes but does another child want to be born and want to suffer?! i am fully aware that our parents suffer as well, i hate watching my mum get upset, but the PAIN is ours....and we didnt ask for it. i think that is the question here, not how brilliant you are at coping.

 

[anonymous]

I´m really sick right now. I´m on the transplant list. I can hardly breathe. I´m on oxygen all the time and if I want to go out I have to ask someone to push my wheelchair. I´m on morphine but thats not enough, I´m in a lot of pain.
The one thing I hate the most is to be in the hospital, but because of my poor health I've been there a lot lately.

I really want to live but I have been waiting for over a year now.
I´m dying slowly, and the pain of losing everything importent to me is great.

If my mother would have terminated the pregnancy, I wouldn´t have had anyting to lose.

Ginny 28

 

[anonymous]

Actually, I agree with most of what that poster said. And, she said she wants another child, that doesn't mean she is planning to have another child. Personally, I would not plan another child after having one with cf. However, if I did become pregnant accidentally, I would not abort the child simply because he/she has cf. In my opinion, every child has the right to life. It's true that the life of a cfer is more difficult and shorter than most, but as most of the adults on this site have testified, that does not mean their lives are worthless or meaningless - quite the contrary. I guess the heart of the matter comes down to WHY you choose a certain path. If you choose to abort a child because he/she has cf, are you choosing it because you're scared to have your heart broken (as the poster mentioned) or are you choosing it because you truelly believe that it's in the best interest of the child?? My guess is that for most, it would be somewhere in between an altruistic and selfish act. Based on the response by the adult cfers here, it sounds to me like almost all would rather have the life they have than to never have lived. For myself, I'd consider that proof enough that a child conceived has the right to life. Now choosing to conceive knowing that you're both carriers is quite a different subject. But, that's just my opinion.

 

[JohnnaMarie]

<img src="i/expressions/heart.gif" border="0">
My heart goes out to all the families that are caring for children with cf and for those that have cf themselves. I also have cf and so does my younger brother. My parents did not know of genetic testing when I was born. They did not even know i had the disease until my younger brother was born with it. The doctors in the little town where i grew up had no idea what cf even was.

My husband and I felt that the only way we would start a family was if he tested negative for the cf gene. He did the genetic testing...(.AMBRY)..... the most extensive testing that is out there today... and we got the results that he is not a carrier of the cf gene. Now, we can try to start a family.

I know that there are people out there that had no idea that they carried the cf gene and they had children. That is the way it was in my family. No one had ever been diagnosed with cf in my family before i was born. Sometimes the disease does not show itself until it is too late and a child is born with it. A child with cf is still a gift from God ....but the suffering they may endure with this disease may break your heart.

For those of us that know that we have cf, I believe we need to be proactive and protect future generations by getting genetic testing done. Many insurances cover it and it was well worth the blood draw to us. I am in no way saying that any life should be terminated! I am saying prevent the disease from being passed on. If you are in a position where you can have the testing done please do so. Use the genetic testing so that you can be informed before you make a life. And if both of you turn out to be carriers... there are other ways to have a family without passing cf on. I think that all life is precious .... we want our children to have a chance of being healthy.

I love you all and wish you all the best.


Johnna/26/f/cf

 

[anonymous]

I regret my entire existance. I wish I wasn't born because now I look back at what I accomplished in my life and it turns out to be nothing. My life was a mess, and there is no second chance or something in return. The worst thing is that I may end up in hell which is a real pity. How can I not regret the moment I was born? CF destroyed me at all levels and I had to sit and watch my life crash infront of me. Its very unfair. I hope that before I die I can find something to cheer about. Wouldn't a time machine be great!!!

 

[anonymous]

Would you let your son or daughter get on a ship which is goin to sink? Thats what life with cf is. I'm a male who'll never be a father and i wont inflict such pain on my kids if i was given the chance to choose.

 

[Emily65Roses]

But what if there was a kick-ass party on the ship before it sank??

 

[anonymous]

Every day is a new day with a clean slate if you believe in God.. To think that your life is worthless and meaningless and that you may end up in Hell to boot is a pretty sad and horrible place to be. If you beleive in God which I am assuming that you do, otherwise why would you believe in Hell, God says that the only way that we go to Hell is by not believing in Him and not accepting that Jesus died on a cross for our sins. So being that you believe in God, why in the world would you possibly think that you are going to Hell...and if you believe in God why would you think your life is worthless since God is the one who made you. Most people have regrets about things they did in their lives, we wouldn't be human if we didn't.. I would challenge the last poster to either beleive all the things that God says, about forgivness of sins etc. and not worry about going to Hell and try to live your life the best way you know how or if you don't believe in God then who cares how you lived your life and no matter what happends you are not going to hell because you don't believe there in GOd anyway so there isn't one in your mind..

 

[anonymous]

I believe in God, but I also believe that if cant find peace in my soul and heart, that means I'm goin to hell. I'm too disappointed...

 

[anonymous]

To the poster that says he hates his existence ect...., I dont think it is CF that made your life that way I think it was you! You choose how you want to live your life! Not just CF people but people in general, if we all had that attitude we would all be doomed! Alot of people have medical problems they have to deal with each day and we are all going to die from something at some point, that dont mean you have to have such a bad attitude.... maybe you need to talk to your social worker at your CF clinic. How old are you? Oh well, you probably would not tell the truth anyways!!!

Sorry you have the attitude you do.........

 

[ClashPunk82]

Not everyone deals with their CF the same. Some people can handle it and others have the hardest time with it. I don't think we should make him feel worse. If he feels the way he does then I just feel bad for him. I am hoping that maybe you talk to someone to alleviate some of the pain you are feeling. My brother is the same. He doesn't like anyone to know he has it, doesn't like to talk about it. he is an alcoholic but has been sober for about 7 months now. I am hoping he will stay that way. It's all about your personality and what kind of person you are. I myslef don't let it bother me that much and am prett happy most of the time, but my brother is the total opposite.

Nicole 22 CF

 

[anonymous]

I need some help here:

My medical bills keep pilling up. I am currently on SSDI receiving benefits due to my disability.
Do most patience work at all? How do you keep up with expenses? Do most live with parents?
I am trying to make a life for myself and stay on top of the game for CF.

Please can someone give me advice. It seems like everytime I turn around there is another bill and my SSDI in a small amount. I do have Mediacare to help but that does not cover prescriptions.
The prescriptions are a killer.

Thanks all for your help!!!!

Mark

 

[anonymous]

Ginny,
I feel for you. You're in a tough spot, as are probably a lot of others reading this.
I don't know what to tell you except that I will be praying for you & for some new lungs for you SOON!!
Hang in there.<img src="i/expressions/rose.gif" border="0">

 

[JohnnaMarie]

Mark:

I have cf. I worked for 10 years on and off. I dont work anymore either. I am really lucky that my husband has a great job and pretty good insurance. So, we are finally getting the medical bills caught up with for now.

My brother is 21 and he lives with my parents. He also has Cf. He has never been able to have a job. So, he is finally getting approved for SSI. They denied him the first time. So he had to get a lawyer. It took him 2 years to get his help. I think he is just going to get his first check any day now.

Until he turned 21 he had medicade. The state was losing funding so he lost that program. So...He is on the Medically Handicapped Childrens Program...it transitions into the adult program. The trouble with it is it does not cover alot of the meds that he has to take so he was getting some serious bills for meds.

His social worker told him about grant programs that Genentec has for patients that cannot afford medical stuff. He also has some help he gets from the company Genentec. I hope I spelled that right. They make pulmozyme. They have some grant programs ppl can get on if they take that med...or maybe if they just need help not sure about that second part...would be worth checking into tho...He is also on the Chips program...this is in Nebraska....So the insurance company pays for the hospital stays and the Genentec pays for the insurance premium and the medically handicapped pays for the deductable on the insurance. It is a happy little family of companies. He had to do that because the state of Nebraska was cutting back on Medicade and kicked him off the program eventhough he had to have it. I hope I have helped...or maybe just confused you? Anyways that is what my brother does to cover the costs. <font color=white style="background-color: 3E3E3E;">Genentec</font ft> is the name of the company...

Johnna<img src="i/expressions/present.gif" border="0">

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I regret my entire existance. I wish I wasn't born because now I look back at what I accomplished in my life and it turns out to be nothing. My life was a mess, and there is no second chance or something in return. The worst thing is that I may end up in hell which is a real pity. How can I not regret the moment I was born? CF destroyed me at all levels and I had to sit and watch my life crash infront of me. Its very unfair. I hope that before I die I can find something to cheer about. Wouldn't a time machine be great!!!<hr></blockquote>

You probably don't realize how many lives you have touched, Just by being you! You are so strong look at all you have survived! You have done and gone thru more than people do. You are stronger than most every one! I hope your pain ends. I do more people care than you think...