Transplant ?

[Allie]

1) You are attacking someone you can't defend himself

2) They weren't MY concerns....but I'm not going to pretend they weren't valid

3) You are completely ignoring the fact that you were cruel in what you said. It didn't need to be said, period. What did you expect to hear back?

4) This is a thread about people who have decided again transplant. Did you? No. Is this the "Let's all help you understand why someone wouldn't get a transplant" thread? No. for one, you won't accept the reasons people ahve for not getting transplants, you just keep pushing your ideals, which are not everyone's. I gave you a handful of reasons Ry decided not to go for it, from losing the house to a large probability he would die within a year. My opinion is you have NO couth, and you just don't have any empathy for people's feelings.

 

[Allie]

I can't give up, Em. I can't stand to see someone attacking Ry when he can't respond back, it makes me insane.

 

[JazzysMom]

I have just started getting to understand the whole tx thing. I dont know if I would go thru with it & not because I dont want to live. Its not an easy fix nor is it a cure all. You have to survive the surgery itself then you always have the chance of rejection etc. Many people have died shortly after tx just like many people live on with full & more productive lives. I dont agree with the "CF doesnt have a cure" scenario because a tx is STILL NOT a cure. Its a bandaid over the largest or most lethal factor of CF. In addition to this whole thought.......the fact that Allie did lose Ry not that long ago isnt enough to be a bit more compassionate. I think you could have addressed the ??? without all the extra comments & gotten the info you wanted!

 

[IG]

I haven't read this topic completely, nor am I going to. I'm just going to state my opinion on this whole subject.
Why would somebody not chose to have a transplant? Very simple. For these people that do not chose transplant...
They have more than one option available to them. Death for them is no problem or maybe it is I don't know but maybe it's something they don't have a problem making peace with. I'm not saying this negatively, and I mean it with the greatest respect.
I cannot fathom how strong a person would have to be to make that decision, the decision to die. That's the reason why I chose transplant. I AM AFRAID TO DIE. I am afraid of death. For those who aren't, then I have only respect for them. They have more than one option. They can have the peace that that decision can bring to them. They perhaps have enough faith to know that maybe perhaps death isn't the end. I can only respect them. I'm not saying they go into that decision without fear. I'm just saying that it's neither right nor wrong. I made my decision, I can live with it and I can die knowing I did what <i>I</i> thought was right for <i>me</i>, I have no right to judge a person because he made the decision that he or she thought was right for him.
I've said this before and I'll say it again. Transplant... it's death with no chance at life, or a chance at life with the risk of death. I've taken that risk knowing the consequences. I've tried to outrace death and so far have been successful. I don't know how long I'll be able to do that. I've joked about making it to 80, and I hope I can accomplish that goal. Maybe when I get closer to the end, death, for me, won't be a big scary void but something I can come to terms with. But not now. I can only admire the people who have gone through it. Something that is apart of everyday life, it's not something that most people have to think about on a regular basis. but we do. So I can only respect those who have chosen it without regret.

And that ladies and gentlemen, is my opinion. For those of you who don't agree, to each his own.

 

[littledebbie]

Emily, I don't know you but I always think your comments are thoughtful and well communicated, I appreciated your input.

Allie, if all we can take with us is love, Ry is a wealthy man.

Supremanfan, ha you are funny I guess. You are not trying to understand at all. Religous thing? Did that sound religous, hmm, if you say so. But, no it's not a religious thing. It's just what's right for me. I don't think you know me well enough to make some of your statements either, depressed, scared, done more than me in your life, I'm sorry have we met? Again i was looking for people who made a similar choice, not so i could try to explain my personal decision to the pro Tx police. ya meany <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[supermanfan]

Well guess what? You all seem to want to say something about me, like I attacked a dead man that can't even defend himself (yes I would love to talk to him), or that I'm rude, and should have said it differetly. Well gues what? I am what I am, and I am how I am. I don't sugar coat anything when it comes to CF or transplants. So since you have all thought the need to jump on me, I guess you've p*ssed me off, so here's my release!

Excuse me Allie, but you are being absoutely ignorant of what I asked you or stated. I said I couldn't fathom it, and I would not choose Death, so I asked you to get an understading (which since you are not the once to have actualluy choose death for yourself, it was probably wrong for me to ask you), but all you tell me is that he didn't want to do it, and you would of had to move, and it was his body, and you loved him so that was it. I'm sorry, but I still don't understand You apparently are not thoroughly reading and comprehending what I'm asking. Moving is no big deal, and I even told you about the UCSD Housing in California... I'm sure many transplant centers have something similar. Well if you had told me it was a religious thing, or some kind of reasoning that I could understand, I may not agree, but I would have completely understood. As far as loosing property, I've always felt life was more precious then material items. My opion. I never attacked you or you husband. I would never make that decision just because I had to move; again my opinion. I am sorry, but you lost a husband and your child lost a father... That is a sad thing... and I know if my husbad chose not to have the transplant I would have been mad, and upset.

I'm sorry that for some of you death doesn't seem to be a problem. However you are the one judging me! You said how dare I judge Ry. Well all I asked was if he was depressed because many depressed people want to die. Do some research on depression if you don't believe me. Even my doctor at one point had asked if I was depressed, and part of the transplant work up is to see a psychiatrist to check your mental well being.

As far as Emily65roses... you are also the ignorant one. I stared my opinion about transplant and how wonderful it is, and then asked some questions. You should know better that when someone askes questions they don't understand, and want to understand (I don't are how rudely you think they ask the quetions). Again, just because you don't like someone's opinion doesn't mean they are a terrible person, or that they are attacking you. All you people need to get over the fact that this is not an attack fest. This thread was about transplant, so you bet your life that I will always try to promote transplant, because I happen to think it is a wonderful thing, and If I can change a person's mind to give them the gift of extended life I will try my hardest to do so. I believe in it 100%

I had a friend who died two years after her transplant, but she said it was worth it to have the extra time. She managed to go to Japan during that extra two years. Her family (very religious as they are) also still encuraged me to go through with it, and that any extra time is a gift. I've had 9 additional years, so ya. I'd say they are right. I'm not sure what you guys are hearing about transplant, but you must be hearing some terrible things. Transplant is not a terrible thing. Do more research, get second opinios... I don't know why any of you would have to contemplate the issue. It will extend your life... for your child (if you have one) wouldn't you want that. Any parent would usualy go to the ends of the world to save their chile. I know I would. Wouldn't you encourage someone you love to try whatever they could to save their life?

I have always thought people with CF and any disease that causes them to fight for life were stronger people. I guess I was wrong. I don't necessarily think someone who chooses to die when there is something that can help them is strong. If that hurts your feelings Allie then maybe I'm talking about the original poster of this thread, and you are jumping to conclusions.

Guess what if you thought I was being rude, unsympathetic, insensitive... well you ain't seen nothing yet. And the worse of all it that you all could have just simply given me a straight answer instead of jumping on me. I stated my opinion, and the only one here who posted a decent answer was 'ImmortalGoddezz'. So I thank IortalGoddezz for what you said, and I guess I must have been afraid to die, because I certainly wanted to live, and I have richly for the last 9 years. I've travled to other countries, I learned to ski, I bought a home, have now two horses, two dogs, and two cats, swim once again, never worry about not being able to breath if I go somewhere... I am totally are free, and most of all my relatonship with my husband has grown deeper and stronger each and every day. I certainly was not before my transplant. In fact everynight before I went to bed I'd pray that it wasn't my last day. That's how much I thought about my healt. Every activity I did was limited to my health... I went no where thinking if I would go into a coughing fit, turn purple, or have to be taken to emergency. That is a heavy burden... and the comment earlier from the original poster said something about loosing your spriit. Well I can certainly see loosig your spirit being in the condition I was before transplant. Again, if she wasn't talking religiously, but religion does come into some people's choice making, and that is more understandable to me than not wanting to move, and it pained me to have my huband hurting. Again, MY OPNION, and I have the right to it.


And if any of you think I'm stupid, or ignorant and don't know what I'm talking about... I can at least say that I've been through things most of you haven't and never will experience. Pre-transplan and post! Again, I can't be responsible for your misperceptions of my words or misunderstanding. as far as I'm concerned you all brought out the worse in me by jumping on my post, and I have now acted on it.

Good luck in your future. I do hope a cure for CF is found for you

 

[EB24]

Ok people good grief, lets move on. We aren't internet trolls. Let's just drop it.

 

[Allie]

you don't get it. We FOUGHT about his choice. It was not easy by any means. You asked why. I told you why. He chose it, and it was his choice. And I don't envy his having to make it. But he weighed the options, and did what he thought was best for us. And he didn't want to die in a hospital either. Maybe if you had been in my situation you could see it better. What was I supposed to do, nag and nip at him until the day he died? Or enjoy what time we had left? My issue with you is that you don't seem to respect anyone who chooses differently than you. I'm glad you're doing so well after transplant, but that's not always the case. I have no problem whatsoever with Candice's post, because she said what she did, and didn't call down those who chose differently.

Ry was not depressed by any means. Of all the things he had to deal with in his life, that wasn't it, and yes, he was evaluated for it. I have outlined the reasons he said no a few times, and just because you don't like them doesn't make them invalid. Everything can be a factor. Truthfully, there is a law on the book about not disrespecting a dead body, and that could be pulled out as 'don't remove organs' and has been sometimes, but I just don't believe those were Ry's reasons. But if you want a religious reason, there's one.

My problem wasn't that you think that transplants are a good idea, but you are totally inflexible in that. And, my problem is that you didn't think about how you were saying things. I know you haven't listened before, but I'll try more directly now. What you said, and the way you said it, sent me sobbing. And you just keep doing it. You refer to anyone who chose differently from you as weak. Choosing to step off into the unknown and die is not weak. Just because you can't understand something doesn't make it wrong. I can't understand how a woman could be attracted to another woman, but that doesn't make it wrong. It means I'm different.

And , as long as we're handing out opinions, this thread was started for people who have not chosen transplant. Once you figured that out, you could have been polite and left. But you didn't.

I don't know, nothing I'm saying is going to make any sense to you.....

 

[Emily65Roses]

I told you before. Pay attention. Do I need to repeat myself here? Okay, ready... I'm going to say something important... keep reading!

I don't care about your opinion. You're entitled to it, and I don't care. Don't care. Don't care. Don't care. (Is that enough times?)

What I cared about, same as Allie, is the way you went about it. Telling Allie her dead husband was wrong for making that decision blah blah. That "what person, especially with a wife and child would choose to die?" implying that he was selfish and didn't care about his family. It's each person's individual decision, and I don't personally think there is a right or wrong.

If we're just looking a tx, I'm with you. I think it's worth the try. Why not? You're either going to die, or you might die, but you might live. But that is solely my view of it. And I will NOT fault anyone else for a different opinion. You shouldn't either. If someone is an adult and chooses not to have a tx, after consideration, they should be able to hold that view without you jumping down their throats.

I'm done now, because if you still don't get it, you're not going to. But reread what I said if you're still confused. I think I repeated myself enough times here. So if you don't get it now, you're just not reading it thoroughly or you're dense. It's very clear. If you're an intelligent adult (and there's no reason you're not), you should be able to understand what the hell it is I'm saying.

 

[anonymous]

Wow, people, just breath. Arguing is just gonna bring up emotions from the past that we don't really need. I think you too should take a couple of happy pills, or drink a bottle of wine, and shake hands. We're all in this together.

 

[anonymous]

I am currently on the waiting list for a transplant. I always knew that when my time came, I would join that waiting list. Like you superfan, I never used to be able to understand not taking that route. But i have tried very very hard to listen to others, as, believe it or not, turning down a transplant is a lot more common than you may think, and that to me suggests that it is a more carefully thought through process than I first assumed.

Over time, through learning from others, both who have taken the transplant route and who havent, I have understood much more about the choice. I think the first key thing is transplant is NOT a secure route to health. it is a dangerous operation, some people die on the table, and 50% live to 5 years. Whilst most people do well, some people do not. And I think this is probably very pivital in some peoples choice. There was a girl called Nicky West who did a lot of awareness raising before me, an incredible woman, she worked tirelessly raising thousands in the last year or so of her life. She chose not to have a transplant, and from what I can see she was intelligent, fully sound of mind, and enjoyed life.

I run a website called <a target=new class=ftalternatingbarlinklarge href="http://www.pwcf.net">http://www.pwcf.net</a> which I co-ran with a friend who died after 14months on the tx waiting list. On there, under the articles section, is a piece written by someone who has also chosen not to have transplant. Whilst I do not share their opinions, I respect them, and more than that I respect the fact they have written that piece for me to put there so hopefully others can see how this particular person views things. A british newspaper did a piece on me recently, and in it I spoke about the turmoil in my head that i feel being on the list, and writing that also made me realise why some people may want to be in more control, and get their affairs settled in a clear manner.

You are 100% allowed to say "I personally could never ever feel like that" superfan, you are even allowed to say that you could never understand someone who refuses a tx's logic. But by making assumptions like "they wanted to die" that is slightly disrespectful. People who chose not to have chemo dont want to die do they? I dont think it is as black and white as that, it is an extremely complex matter, one that I profess to being ignorant about and so am guessing a lot - apologies if i have put words into anyones mouth!

Either way, whatever anyone feels, I believe that as a mark of respect, to all those who have gone before us with CF, pre or post transplant, on the list or not, this bickering should stop. I hope some of this has made some vague sense, stay happy and healthy all <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I actually read this entire thread and love the way it ended. I agree with the person with the website pwcf. I am going to check this site out. by the way off the subject for a minute, I created a website transplantbuddies.org six years ago and never once had a thread like this. If I did, I would have written to the person(privately) attacking this innocent person and would have deleted their message. Yes everyone is entitled to their opinion but please do not insult or attack the patient or their family after they have lost their loved one. Give me a break

There is more to life that fine tuning how others think. We are all entitled to our opinions. Sometimes our thoughts are better left unsaid. Risa