Lung Transplant List

[anonymous]

Lung Transplant List

I was curious as to how many are on the waiting list for a transplant. Also where are you from. Yes we are on the list, my bf just finished his test, and he is already in the system. We live in Illinoi, and have a lot of things to prepare for, but it is very exciting, because it is not easy getting on the list, unless you pass every test. We are going to have a party to celebrate making the list.<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ClashPunk82]

RE: Lung Transplant List

I am being evaluated for the list right now. I don't see it as something to celebrate though. For me I am glad I am going to be on the liist but sad I have come to it so early.

 

[anonymous]

RE: Lung Transplant List

We feel like, after being put on the list, after all the testing, it is something to celebrate! Because the doctors are very strict as to who they put on the list. And in between all of that the collasped lungs, two times just since the testing. And yes it is something to celebrate, for us. After the transplant you can not have any body at your house for two months. Why is it that so many people have to be so negative all the time, you finish all your testing, and when you are put on the list you will be happy to. It alaways seems if it is not something you are not happy about you have to try to make someone feel guilty or something for being happy. Yes it is going to be tough after the transplant, ask any one who has went through ALL of the testing, if they werent happy. See we look at all the positive things , not just the negative! I really wish some people would not be so harsh on here. Think about yourself, as to how you would feel, when you start to write nagative things. WE are happy and we are going to have a bbq with all of our friends. You have to go in this with a possitive mind, there is no room, for depression or anything, because you want to be as strong as possible, mind, body,and soul. So YIIIIIIPPPPPPPPEEEEEEEEEEEEEEEE for us!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Emily65Roses]

RE: Lung Transplant List

I don't think she was being that harsh or negative. She didn't say you had no right to be happy about it. You asked who else was on the list, and she commented that she was, but that she wasn't celebrating it. I imagine she's also happy about it somewhere (or at least will be, after it's all done and she's feeling better). But for now, going on the list at 22, knowing that it's tx or death, that can't be the happiest thing in the world (not meaning to upset you Nicole, I just figure this must be something of how you feel). I can only guess, but I imagine she'll be happier after she knows she's got lungs, they're in her, and the healing is mostly over. I really think she was only explaining her personal feeling on it, and there's no reason to attack her for "being so negative." (Nicole, if I talked out of place here at all, feel free to correct me). <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

RE: Lung Transplant List

You know we know all about tx or death. We were told the same thing, that is why you have to be possitive. My bf wants to live becausr he has someone to share his life with. What i am saying, is when it comes time to good things like this, yes it will be tough, i just think everyone should be and say possitive things, maybe when she is done she will understand how we feel. my bf is 29, he has had 5 collasped lungs in the past 11 months, the first one started 5 years ago. He just made his mind up about this last year. So yes we are very happy about this.

 

[ClashPunk82]

RE: Lung Transplant List

Emily no you are not out of place at all. You said it perfectly. Now for the anonymous poster I am the most positive person I know. Nothing bothers me I just go with the flow. When I found out I needed a tx I cried for like 10 minutes and then said ok where do we go from here. I am glad your bf is excited about the tx. I am glad I am able to get one yet I am sad I have to have one and I have every right to feel that way. I have wonderful family and a wonderful bf and am scared that if I have my tx I might die during or after the surgery. I am sorry if you think I am such a horrible negative person but this is who I am. And thanks Emily!! <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

RE: Lung Transplant List

<img src="i/expressions/face-icon-small-smile.gif" border="0">I say yyiiiiiiiiiiiiiiiiiiiiippppppppppppeeeeeeeeeeeeeee for you to!!!!!!!!!!!!!!! I think you are right about being happy and wanting to celebrate. It is hard to get on the list. Keep on being possitive, don't let any one bring you down, or try to make you feel bad for wanting to celebrate.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

RE: Lung Transplant List

Congrats and enjoy your celebrations and I sincerely hope that all goes well for your b/f.

Im with u on this one Nicole. I can completely understand where you are coming from and u did not come across as negative, just your way of seeing things.

A very intelligent friend said to me, I see on tv you will be able to have a transplant and everything will be ok. He is the same person that whinges when he has a cold (which he calls the flu) but its ok for us to have our chest cut open blah blah blah.

I hope when someone with Cf is surrounded by celebrations and positive people, that he or she is able to share their concerns/fears and is able to express what they want should things not go according to plan. I have found it hard at times when everyone is on top of things and I want to have a little cry, if I share they will then worry about me. Bloody hell, its hard and it is different circumstances for all.

 

[ClashPunk82]

RE: Lung Transplant List

Thanks. All I was saying was for me at this point I am upset about it. There was no reason for her to attack me and say I was trying to make her feel guilty for being happy or that I am too negative. I am also upset because my brother who also needs a tx decided he doesn't want to go through with it. I also have another brother who is mentally delayed and I am always worried about what will happen to him if both my brother and I pass. My parents aren't getting any younger and we have no extended family. I have a lot on my plate like many others and at times I feel overwhelmed and upset, and I have evry right to feel such. I never said you should feel bad for being happy or not celebrate but you have to understand not evryone is like that. all the time. We are human and we will get upset mad and angry. You can't blame us fo that.

 

[anonymous]

RE: Lung Transplant List

You know what started off as someone being happy. Somepeople just can't be happy for someone else. You don't think they don't know them. I'm sure you would want some one to burst your bubble to, if you were happy. Why can't people just say congradulations, without any negative replies, no matter how small they are. Come on now! I say congradulations, on this happy news!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[ClashPunk82]

RE: Lung Transplant List

And congrats to your bf. I thought I did say that in my first post but didn't. I aplogize for not saying it in the first place, so congrats to him.

 

[anonymous]

RE: Lung Transplant List

And people wonder why they reply anonymous. You don't think they know the bad things. Did you not read the whole thing about collasped lungs, so yes they have every right to be happy. So this went from someone wanting to celebrate, someone thinking they did't think it was any thing to celebrate. It is hard enough with cf and being positive, and up beat. I don't think people should start putting nasty comments on this subject. Maybe if someone is having a bad day or in a bad mood, reply when you aren't. Don't ruin someone being happy. I'm sure they know all thedetails, good and bad.

 

[NoDayButToday]

RE: Lung Transplant List

To all of you who posted that Nicole is being negative and ruining the other person's celebration, a few things:
a) the original poster posted this not as a celebration of her boyfriend's listing, but as a survey of sorts to see who else is listed, TXed, etc. She also spoke, briefly about her feelings about it. So Nicole responded with basically the same thing, her feelings just weren't the SAME.
b) I'd be curious to know if any of these anonymous posters attacking Nicole's negativity are waiting for transplant themselves, or have had them, or have even been in her shoes remotely. She's a 22 year old girl (yes GIRL, most fellow 22 year olds are still in school) who was recently told, "Look your current lungs are failing you, you need new ones." That's pretty much an emotional punch to the gut.
c) Personally, I don't think Nicole's attitude is 'negative'. It's pretty realistic. Transplant isn't some easy deal once you are listed. That doesn't mean getting listed isn't a great thing, but it's sort of like getting onto the parkway from your house on a road trip, and popping out some champagne because you didn't get lost yet.
d) Everyone is worried about Nicole getting the original poster 'down'. But to me, the person who needs the most support right now is Nicole. So here's a *hug* Nicole, and, I'm here (as is Em, and lots of other people who actually sign their NAMES).

Good luck to both listees.

 

[anonymous]

RE: Lung Transplant List

~For the first poster i am happy for you and your b/f that he got listed. Thats wonderful !!<img src="i/expressions/face-icon-small-happy.gif" border="0">

~ For Nicole, I am sad for you because i can almost feel your pain of what you are faced with. I know it cant be easy. Try to stay as positive as you can, and dont let anyone on the board get you down. You have a right to feel any way you wish. I cant say that i would feel any differently if i were in your situation. I'll keep you in my prayers<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

RE: Lung Transplant List

To the first poster, I can completely understand how you feel. My husband is not needing a transplant yet, but we will be there someday I can entirely understand you joy and the happiness that you feel since you FINALLY made it onto the list. When my husband does get to that point, I know I will feel the same way you have expressed. Go an celebrate!!!!!!!!!!!!!!!!!!!!!!!!!!! Also, it's not that people aren't happy for you, it's that this is a place where they can also express their own fears or sadness, or joy about their own personal situation and felt comfortable doing so. I don't think anybody is trying to drag you down though.

On the other hand, I can understand the feelings of others on this site who have expressed that they don't see it the same way. I think it is different for the "bystanders" (myself being a bystander) than it is for those who will have to endure the procedure. My husbands feelings are very different than mine. As a matter of fact, he hasn't even decided if he wants a transplant. He has decided he will go on the list, but he does have the progative (sp?) to change his mind if he so chooses. So, I don't imagine he will feel any joy if and when he is accepted on the list.

you two go out and celebrate and please keep us posted on how things go.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

RE: Lung Transplant List

I am the original poster. First off, my bf is in the hospital right now. The thing that upset me about Nicole is her stating she didn't see this as something to celebrate. My bf has told me what he would like said. But i am going to respond first. Replys 7&8 loved them. It is amazing to me how someone can be happy, and others will try to RUIN that. Do we know all the nasty gory details? What do you think? We don't sit around dwelling on everything that is bad, because they are in your brain for life. We think of the good , like taking a shower and not having to sit for two or 3 hours catching your breath or throwing up because you are worn out and out of breath. Besides all the regular things, 2 colasped lungs ,c def , the flu, not 1 but 2 liver biops. These are some of the things he has done many test , this in about a10 month span. So how dare any one think it is not something to celebrate. The ones that feel so sorry for Nicole have you had transplants? Don't worry about bringing us down, we are not the types to feel sorry for ourselves. It is hard to get on these list . And Nicole Has not been through all the testing, by what she wrote. My bf says he is a fighter, not a quiter, he doesn't give up that easy. I'm sorry about your brothers. When it comes to things like this, the smallest negative things should not be posted. To the reply, does my bf get to get his feelings out.Yes he does everyday . Maybe some of you are not in are place, but i hope noone says anything negative. Oh yes we just jump up and down every day , because we are so happy that he is going to get his chest cut open. Here we were trying to see who else was doing this, and are happy, but you are all feeling sorry for Nicole , because you didn't like what i replied to her. No one wants this, i just hope at some time when Nicole or any of you are happy about something, that no one says anything negative. Oh forgot bf is on10 liters of oxygen, bipap at night, 12 to 14 liters of ox. when exercising. We are bad for wanting to celebrate him not having to deal with these things after a transplant, yes we know the what ifs. Another thing if someone is having a bad day, mad, upset, wait until you are not before replying to topics . We hope many others get good news like us. This is what my bf wants to do so i am behind him 200%. CRZY DIMON ST. LOUIS 3200

 

[RadChevy]

RE: Lung Transplant List

I am so happy for your boyfriend getting listed!!! It is a great day when that happens. After all, it means you have a chance to have a healthy long life!! What more can be said about true happiness.

It is also a scarey time, a time of wonderment, a time of insecurities, a time of fear, concern, and the unknown. But all you can do is hope for the best, but there will be waves of insecurity.

My listing was back in 1995, and while I was happy to be listed, I was disappointed I was that bad that I needed to be listed. Somehow I thought I would never get to needing a lung transplant. 30 months later I got my lungs when I was 33 and glad I made that galant jump to transplant and it was worth any pain, aggravation, fear, etc that I had to go through, to get to my healthy point now. Well worth it, and would do it again.

Anonymous, one sentence you mentioned in your post - something to the effect you will not be able to have anyone to your house for 2 months after..... was that told to you? I would like to know what center still takes that approach. After all, in the hospital your boyfriend will have doctors, nurses, PT, Respiratory and who knows who else coming in his room - with or without a mask ( but tell them to wash their hands). So I wonder why they feel that people on the outside are such a threat. Could visitors wear a mask? Wash their hands, not visit if they have a cold? Would that change that idea of no visitors? People are important in this process, and by not beinig allowed to have any friends or family around - you might be driven to depression. We need people.

Really watching for illness that others has is important and avoiding it. Not being around plants and dirt the first couple of months is important. Washing hands, wearing mask really doing common sense things are important and actually all people should do the same thing. Not going to buffets, put a mask on when dust is flying outdoors, avoiding birds, rodents is important. Lots of important stuff and all worth the little effort it takes to achieve that.

Good luck and what center is he listed at?

Feel free to email me anytime, or visit my web site.

Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

My email is luckylungsforjo@aol.com


Joanne M. Schum

Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/

Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm

 

[anonymous]

RE: Lung Transplant List

Finally a post from some one who understands. I am the original poster. Thanks Joanne, you too Julie. First off this is very difficult, whether you are a man or a woman. You know instead of some of you feeling sad for Nicole ,in ways she is lucky. She has had the joy of having brothers,the joy of having supportive parents, and friends. Which some with cf haven't. Some never had siblings, come from divorced parents, moms moving away from you. I could of said alot of unhappy things, that has happened to my bf, but i choise not to. Most of these post have not been through any of this and hopefully never will, but if you do i hope people are not nasty to you, especially if they don't know what they are talking about. Yes everyone has aright to there own opinion, if they know what they are talking about, and have been there. Julie, i am sure she understands, because she is married to someone with cf. Your husband is very lucky to have a strong person like you by his side. So i say shame on those who posted negative things with out having dealt with any of this.As to Joannes questions, yes we were told this, but we are having a meeting today to go over alot of things, to be clear. They only want as few people as possible around him. I am glad you understandthe reasons we are happy. I will not post my email on this site, because i don't want the negative people replying. I might email you with it, and maybe Julie too. Right now I don't want to say what hospital, they are a great hospital. They are being cautious about things , because there is only 2 antibiotics that work for him. Thats all i have to say for now. We all have lots of questions, and what ifs. Should we sit around and dwell on them or come out fighting? <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will try to reply after our meeting today.

 

[anonymous]

RE: Lung Transplant List

If you want to email me ever, for any reason my email is division902@hotmail.com. I understand where you are coming from with your joy and I know that some of the posts upset you. I can see and understand that although you are very happy about the transplant listing, this is also a very vunerable time for you- whether you realize that or not. I think you might be taking things to heart moreso now that you would have before-if that makes sense. I really don't think anybody was meaning to rain on your party though (so to speak), I think others were just feeling some different emotions about being listed and wanted to express them-given the topic. I know it's hard, but I don't thinkt hat you should take it personally. I am really happy for the two of you and I hope that all goes well. Please keep us updated and don't harbor hard feelings, I really don't think anybody's intention was to be negative.


Julie (wife to Mark 24 w/CF)

 

[Emily65Roses]

RE: Lung Transplant List

I agree with Julie. I never intended to rain on anyone's parade. I just don't want Nicole attacked for her opinion. I really don't think that when she started typing on this thread that she thought "Okay, how can I make this person feel miserable and depress the hell out of them???" You asked about people on the tx list, and she responded with her personal feelings on the subject.
"So i say shame on those who posted negative things with out having dealt with any of this"
I think all of us have dealt with this in some manner or another. We're all CFers or related to somehow here. I am a CFer myself. Even if those of us who wrote back have yet to get to the tx list personally, that doesn't mean we don't know what it's about or that we haven't dealt with it. A lot of us are friends here, and I've read posts by people who are dying, who are listed, who are pre-tx or post-tx. I've also talked to people who have chosen not to go the tx route. Not only that, but I know that at somepoint, I will be staring at either tx or death. Regardless of my current condition, I've certainly thought about it a lot myself. I've discussed it more than once with my own boyfriend Mike.

Now that I've said all that... I don't think anyone here meant to make you feel bad about your boyfriend's being listed. Nicole simply added her opinion on her own tx listing. Also, many of us here are not just waiting, looking for people to attack. If you wish to post your email for Julie or anyone else, I doubt people will email bomb you with rude comments. We're not that juvenile. Your decision, but I just wanted to let you know that I think it would be safe to post it.

Finally... if I haven't said it already, absolutely congrats on the boyfriend's being listed. I hope he is doing well, and hope the lungs come to him ASAP. Keep us updated, and let us know when he gets his new lungs. I'd like to know how long you guys wait, and how he does once he's post-tx. We will all be hoping his lungs come ASAP and that he does well with them. <img src="i/expressions/rose.gif" border="0">