need help with helping someone with CF

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rebekahphillips

New member
The title sums it up. So here is more details. MY B/F is worried that I will get really worse and leave him behind. I told him all the facts and have told him that people do live a long life with CF. I told him that dying is something we all have to do, people die suddenly from any type of accidents, and people do get diseases later on in life. He is scared that he can't take care of me. I told him in Texas Cf is required to be coverd by insurance.
He is getting better of accepting of my CF on a deeper level. Before hand we were friends for many years so he really didn't ask too many questions or had to be concern. Now for a while, he wished that there was a way I could lay off my treatments. ( i did explain to him my treatment scheduleand the reasons behind all the medication and treatments.) LAst week, he was starting to get that I need the treatments. He said that he couldn't wait til I get the transplant so that I could tamper off the medications.
I really love him. Could anyone help me help me to realize that everything will be ok.
Thanks!
 
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Allie

New member
I think most dsignificant others go through that when they first 'get it". I know I did. I freaked out, scared he was going die like...tomorrow. It was just something I really had to work through for myself. Ry really couldn't help me, other than love me while I worked my way through all those feelings. I did, and we came out on top. If you think I can help at all, don't hesitate to ask.
 
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rebekahphillips

New member
what were some of the things to help you understand? I know time is a big factor. I know it takes time to really understand a know concept.
 
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Allie

New member
RY never tried to lie or cover up with me, and that helped me accept it sooner. One thing that I needed to grasp was that I wasn't going to wake up and he'd be gone, I'd liekly know it was coming and be able to prepare for it. Also, I just needed to know that our love was strong enough to handle it. I mean, Cf isn't easy. ONe I knew all of that, I could handle it a lot easier. It was never easy knowing he would leave me, but I learned to deal with it once I accepted it, and just love him, and treasure what time we DID have, whether we got 5 years or 15. Just takes time, Rebekah...I know, that sucks. But let him know that he ewon't be blindsided by CF.

When it comes t realtionships, I have a strong belief that if it's meant to be, it'll be. Love him, try and understand his point of view, let him be open with you about his feeligns and fears. You can get through this.
 
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anonymous

New member
One things to note... A lung transplant is not a cure. You are trading one set of problems for another set of problems. You will still have lots of meds. They will be less time consuming, but they also can have bad side effects. There is also a huge potential problem with chronic rejection. A transplant is the next option after nothing else will work and quality of life very low. It is not like you have the tranplant and then you are normal health wise.
 
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Renegade

Guest
I can't predict the future. Nobody can. And even with a transplant you will still have CF, it is not a cure. It just treats a symptom. If your boyfriend loves you he will stay through till the end no matter what. I was married for 15 years and my wife decided she couldn't handle my illness anymore. She is a Respitory Therapist and she has seen many people die who suffered through Cf. So you can never tell what's going to happen, just keep up the fight and everything will work out for you. You're looking for assurance that nobody can give you. Just keep assurring yourself you going to be alright and have a strong possitive attitude. It's the weak ones who give up before thier time that go to soon. You sound like a fighter. I was born in 1966 and the Dr's told my parents I wouldn't live to see me first birthday. Now 40 years latter I'm still kicking deaths ass. Sorry for the language. I hope I haven't scared you by some of the things I said. I'm just giving you one CFer's point of view. Good luck! Oh , and Just let your boyfriend know that I'm 40 years old 6'2" tall, 195lbs and have no plans of checking out any time soon. And about your meds. Even with a transplant you will always be on meds in one form or another be it for CF or anti -rejection drugs for transplant patients.
<b>CF IS NOT A DEATH SENTENCE</b>.
 
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JazzysMom

New member
If he is scared of it or sick of it then things will only get worse IMHO. If you try to "sugarcoat" things, it might give him a false sense of hope. Just be honest with the "statistics" & the unknown........its difficult no doubt, but love can get people thru it. Look at Allie!
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Renegade</b></i>

<b>It's the week ones who give up before thier time that go to soon. </b></end quote></div>

I seriously hope you didn't mean to write this? Only the weak ones die soon? Give me a break!! What about Allie's Ry? He caught Cepacia and fought so hard, only to be taken away in two years.

I think that its pathetic that you wrote that. Sorry, but its true.
 
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rebekahphillips

New member
s<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Allie</b></i>

Nobody will be surprised by this, but I agree with Liz...and I think you like to start drama.</end quote></div>

sorry still trying to learn how to do this message board. I was trying to add a quote but added the wrong one.
 
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rebekahphillips

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Renegade</b></i>

You're looking fore assurance that nobody can give you.

Ok. Added the right one. I am looking for some assurance that some understanding can happen. Also, I am looking for some advice on how to break someone in to the ways of CF living. With me, I was raised know i could die with my disease or with anything else. Some people have a hard time dealing with death and other people dying that are close to them.
 
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JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Renegade</b></i>

I can't predict the future. Nobody can. And even with a transplant you will still have CF, it is not a cure. It just treats a symptom. If your boyfriend loves you he will stay through till the end no matter what. I was married for 15 years and my wife decided she couldn't handle my illness anymore. She is a Respitory Therapist and she has seen many people die who suffered through Cf. So you can never tell what's going to happen, just keep up the fight and everything will work out for you. You're looking fore assurance that nobody can give you. Just keep assurring yourself you going to be alright and have a strong possitive attitude. It's the week ones who give up before thier time that go to soon. You sound like a fighter. I was born in 1966 and the Dr's told my parents I wouldn't live to see me first birthday. Now 40 years latter I'm still kicking deaths ass. Sorry for the language. I hope I haven't scared you by some of the things I said. i'm just giving you one CFer's point of view. Good luck! Oh , and Just let your boyfriend know that I'm 40 years old 6'2" tall, 195lbs and have no plans of checking out any time soon. And about your meds. Even with a transplant you will always be on meds in one form or another be it for CF or anti -rejection drugs for transplant patients.

<b>CF IS NOT A DEATH SENTENCE</b>.</end quote></div>


You dont want to classify it as a death sentence, but it is a life shortening sentence if nothing else!
 
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Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Renegade</b></i>
It's the week ones who give up before thier time that go to soon.</end quote></div>

This was TOTALLY uncalled for, rude, and mean... as well as incorrect. I hope you can see that. If not, you're deluded and need some therapy.
Also, it's *weak* unless you mean seven days.
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Renegade</b></i>

It's the week ones who give up before thier time that go to soon.</end quote></div>



This was TOTALLY uncalled for, rude, and mean... as well as incorrect. I hope you can see that. If not, you're deluded and need some therapy.

Also, it's *weak* unless you mean seven days.</end quote></div>


Gals, with all due respect. I think you are taking this out of context and over reacting. I think you should give the poster the benefit of the doubt, as I don't think he meant for this to be interpreted they way you are. I understand why you feel the way you do, but maybe you are over reacting with this one.
 
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Emily65Roses

New member
Calling out CFers who died early as weak... is uncalled for. If it's not what he meant, he stated it EXTREMELY poorly, and might think more carefully next time he wants to say something.
 
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Renegade

Guest
Rebekah,
I want to thank you for posted forum. It really got things going. There some people that keep saying that I said it's the weak ones with CF who die before their time. But intelligent people saw it for what I really said, it' s the weak one's "<b>who give up before their time</b>" that die to soon. Strong people fight to the end. Some people say hey I've got this disease and I'm going to die anyway so what the hell. The fighteres say hey I'm going to hang on as long as I can. The smart ones wrote me back and understood it. I never said it's the weak one's that give up that die to soon I said it's the weak one's who give up before there time that die to soon. There is a subtle difference in those two senteneces that some people just can't grasp. Anyway even if you don't get it just keep fighting. Thanks for yor forum again. I must ride off on my black horse and stir up some more evil.

Renegade "The Evil Cfer" (Ricky 40y/ Cepacia since 1996)
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Renegade</b></i>

But intelligent people saw it for what I really said, it' s the weak one's "<b>who give up before their time</b>" that die to soon.</end quote></div>

While I understand where you're coming from, I think its a little harsh that you've said only the INTELLIGENT people understood you. Guess I'm not intelligent because I didn't understand what you meant.
 
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Emily65Roses

New member
Liz, don't worry. I didn't "understand" him either. He needs to speak English properly before intelligent people can understand him.
 
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