Bewildered

[DebbieC]

Hey guys,
I just came out from a tune up and this is the first time my docs spoke to me seriously about transplant. In the past, it has always been mentioned casually, but this time, they had the transplant nurse come bring me some info. (big sigh)
My FEV1 has been in the 30s, but today at clinic it was at 25. I feel ok, I'm pretty thin, but eating everything in sight, and I can do all the things I WANT to do. I don't know alot about transplant, and I'm not sure what I think about it, but I think I'll go ahead and do the work up, because I'd rather be on the list and be able to say "no thanks" than need it all of a sudden and not have all that work done.

Here's my problem: Like alot of you, my parents are divorced. They split when I was seven and I lived with my mom here in Colorado, my dad is a cardiologist in Alabama. They are the stereotypical "we-hate-eachother" exes. I know they both love me, but they've been divorced for 16 yrs (they were married for 12) and they still have court battles. The scariest part of the whole transplant thing to me is dealing with my parents. I love them both, but they are bothe very self-serving and still try to use me. It's like they've done it for so long they don't know they're doing it; and every time I try to talk to them about it they deny all wrong doing and blame the other and shut down ( each in their own, ahem, unique way).

I don't know what to do because I'd like to get the work up out of the way, in the next six months. I'm thinking of doing that first and then talking to each of them, just because I want to make it easy on myself. But I'm really ANGRY that I'm having to worry about this at all. It's stressful enough having to explain everything twice when I just have a clinic appt. What do you guys think?
Thanks for the ears.

 

[anonymous]

Debbie-
I would definitely go through with the transplant. I can't really think of a reason not too. Get the work up and most likely you will have a little bit of a wait anyways so you can adjust to the fact that this has happened and that it has come to this.
About your parents...I would just sit down, tell them how you feel, and say that this is the time that they both need to be your parents and be there for you. No fighting, no bickering. This is about YOU...not them and they need to understand that.
If you have any more questions regarding transplant please ask them. Me and the others will help answer them
Margaret
Double lung tx 11-11-04

 

[jacobus]

Sounds like you're in the exact same situation as me. I'm reluctant to go ahead with a transplant now because even though I'm only at 27%, I can still function normally. I still do almost everything I want to do and I'm not on oxygen at all. I asked the Dr if I could just go on the list and see what happens. In other words, if I got the call in while I was still well then I could pass and wait till I was sick enough. Otherwise I would have to take the risk of having the transplant, it going bad and potentially being worse off than I was before the op.

I was told that here (in Australia), if you are on the list and you refuse a transplant when it comes up, then you aren't just put back to the bottom of the list, they will actually blacklist you and the chances of you ever being offered another are almost zero.

Jacobus

 

[lovingBenandCambree]

Debbie,
As for the transplant aspect. I am not quite sure what to tell you. Its an interesting topic once it is right in your face and you have to deal with it head on. As for the parent situation. Parents are interesting creatures. My parents are just like yours. Very angry and very despiteful towards each other. They live in the same town so it has been a wonderful thing to deal with all of my life but I digress. Last year I went through a terrible time during my pregnancy and nearly didn't make it. It was amazing to me the love and support that I received from all of my parents. Both parents are remarried so I have 4 now. Anyway, they truly did put their feelings a side and focused on me and how they could best support me. It was awesome. They still are best buds or anything but at least they can be in the same room with each other and the tension isn't quite as thick. In most cases, not all when it comes to the suffering of their child I think most parents can set feelings aside. You shouldn't have to worry about pleasing them but focus on yourself for a change. That was always my problem is that I didn't want to hurt the other one so I had to be very careful. It plain out stank and I came to the idea that I didn't need to stress about it anymore because it wasn't about me and they needed to deal with their own issues. Sorry I kind of went off there but I just thought I would share. Good Luck!!!!

 

[Emily65Roses]

Your parents, whether they hate each other or not, should be adult enough to put aside their garbage long enough for you to have a damn tx. It's not as if this is fun for you, and you're inviting them both to a party or something, and one doesn't want to go. You need them both there for this, they are your parents. You need to outright tell them that they need to stop being children long enough to help you through this. They must learn to be in the same room together without fighting, because it's what you need.

 

[DebbieC]

I'm tired of being the mature and understanding one when it comes to my parents. I know they will be supportive, but it just feels so overwhelming. Last year I almost died when my lung collapsed and that's what it took to get them in the same room! They were really good around me, but the minute they walked out the door or went home, it was like same old, same old.

I guess all I can really hope for is for them to be good around me, but I just wish they would REALLY get that their behavior is childish and VERY stressful to me, and that they would actually STOP!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[EmilysMom]

I don't care how much they hate each other, they love you so they should be able to put aside their crap and come together to support you! Tell them Emily and I said so !! ;o)

 

[EB24]

Emily and her mom are 110% right. I also deal with divorced parents who do not get along. Although I don't have the TX to deal with(i decidd agianst one) I have similar "family issues." It is definately a hassle we should not have to deal with. Like we NEED more stress. Sheesh.
Good luck to you and if you ever need to chat about it, feel free to e-mail me. tybaum21@aol.com

 

[DebbieC]

I love Emily and Emily's mom<img src="i/expressions/heart.gif" border="0">!

My transplant people like to do the work up as an out patient thing and it takes about 3 days. For those of you who have had it done, did you have a friend or family member come with you for any of it? Did you space it out over a little time or did you get it all done at once?

 

[anonymous]

Why do they have to be in the same room? Can't they love you independantly? Or is it that you interpret their love for you as being toghether?

 

[anonymous]

I don't want to come across as insensitive with my post above. Maybe I don't understand your question or dilema... Sorry.

 

[DebbieC]

It's a fair question.

It's not literally that they be in the same room, although they will have to do that ocasionally. I need them to cooperate with me and each other and leave their BS at the door. It's just that I don't want their years of immature crap playing itself out during "the big time". My biggest problem is communicating with my dad. We didn't get along AT ALL when I was growing up, but things have gotten better ove the past 5 years or so. But I still can't talk to him about anythin REAL that's going on in my life, CF especially. Any time I discuss or show any emotion he explains it away and that's that. I love my dad, but I think he's a very selfish, cold man. Ulltimatly, I feel sorry for him when I really think about it, but he's my dad and there are things I should be able to expect from him.

 

[ClashPunk82]

<blockquote>Quote<br><hr><i>Originally posted by: <b>DebbieC</b></i><br>I love Emily and Emily's mom<img src="i/expressions/heart.gif" border="0">!



My transplant people like to do the work up as an out patient thing and it takes about 3 days. For those of you who have had it done, did you have a friend or family member come with you for any of it? Did you space it out over a little time or did you get it all done at once?<hr></blockquote>

Debbie, I am in the process of being evaluated but I am speading it over time. I started out doing so many appts everyday and it was too much for me. And I have been sick a lot lately so that doesn't help. And with all the transplant stuff going on I have started having panic attcks and am on meds for that. So I decided to slow down and do appts here and there.

 

[anonymous]

Nicole- i seem to remember (but i could be wrong) that you said you were in Boston. I am too, and I am just curious how the transplant 'work up' situation is at our hospital. I am at Children's.

my doctors too just brought up the subject with me, and it has been causing me great anxiety. i have not had any appts. yet, but i feel like they probably will bring it up at my next visit, or at least after i am done with this cleanout.

you could email me privately if you want
if you aren't from boston then sorry, i guess i was mistaken!!
-caitlin
zoe7777@aol.com