Transplant ?

littledebbie

New member
I'm rather new here so if this has already been covered I apologize.
Has anyone done a work up for, or consider a transplant, and then decide it wasn't the right decision for them?
 

anonymous

New member
im from canada and i have a 5yr old boy who has cf and until today never really considered transplant thats changed i would hope that if my son ever needs it he will get it, it takes a very strong person to make that kind of decision and you will make the right one for yourself
 

anonymous

New member
my best friend died of cystic fibrosis under 2 months ago, but right up to the end of her life she was always talking about what we would do together after her transplant. even when the doctors told her that she was too ill to have a transplant due to constant infections she was still always positive. having a transplant terrified her but the thought of the freedom she felt she could experiance afterwards overrode her fear. if the prospect of what there is to come after the operation is more prominent in your everyday thoughts than the operation itself then you will know what is right for you.
 

anonymous

New member
Debbie,

Yes, I do know several people who decided tx was not right for them.... but then when they were really desperate, and knew that the end was close, they wanted the lungs. That is why I suggest, get listed and let the back and forth of wanting it to work its way out. Not sure if you live in the U.S. or elsewhere, but the way lungs are allocatted in the U.S. is now different.

I had a lung tx 8 years ago and so glad I did. I was a reluctant patient pre tx, but I did it. I was just scared of the whole thing. But thank goodness they took me to OR, with me saying " I just have a little cough, it will go away" and they knocked me out!!

Let me know if I can be of any help. I also have an article about how CFers do not want a tx, but then they change their mind.. Fascinating reading.

Email me anytime
luckylungsforjo@aol.com

Joanne Schum
 

Allie

New member
Ry decided not to get one because we would have had to move, and he didn't want to uproot us. I mean we would have had to move far. West coast to east coast type move. And it was up to Ry, and he decided no.
 

EB24

New member
I am a 25 and my FEV are about 20-26% and I am not getting a transplant. I decided a long time ago not to. One thing was I didn't want to move. I didn't want to risk, going in and never coming home and always being sicker than I am now. Several other things influenced my decision. But I still stand strong and would turn it down today if it came avaiable.
 

anonymous

New member
On the other side of the coin...my uncle had one when he was around 35...and lived 11 more years...and full years at that. Was always out kayaking and jogging and rock climbing. He was very sick before that! The last year or so was rough, but I think it was a decision he and his wife were glad to make..now looking back on it.
 

anonymous

New member
Debbie.

The fear of a TX is common, the risk are real. I know some from my exercise group that have died and the woman in the hospital room next to mine died. Moving to a strange area with the risk of dying far from home is real. No sane person would choose a TX unless the options were nonexistent.

I will take all options to have a good quality of life and spend time with my wife. I loaded three German Shepards, drove 2,400 miles from the western mountains to the flatland of North Carolina to go to a center that could deal with cepacia. Try renting a house with three large dogs, in the eastern US. Post TX I was told I would live longer back east near the TX center, yet chose the high quality of life in the western mountains (for me). If you have no drive, no spirit of adventure, and no reason to live, TX is a poor option. I would rather fight for a quality of life and am not a passive type letting the world go by the window.

I would rather die trying all options, going on new adventures, and despite the outcome, TX is the bigest adventure your likely to ever have. Would not have missed it for the world and would do it again. TX has allowed five years of a good quality of life (6 tough months of pure hell), with some wonderful times. Certainly better than giving up, curling up in a ball, and dying. The dreams and goals have returned post TX. I met great people and have friends from the experience.

I have talked to several people, to be honest most do not have the drive, attitude and lust for life to take the option. Reasons not to take the chance abound and are neverending.

Neither choice is "right", yet why the heck anyone would not go for the adventure to continue your lifes saga is beyond me (unless your 99, no mind and nothing or no one to live for).

I have lived and traveled most of the US, central America, South America, Europe, the South Pacific, Alaska to Saipan and why someone would not move is always facinating to me. I have moved for health reasons most of my life and would move to continue living in a heart beat. My parents moved me accross the US in the early 1960's to see if a climate change would help. I have moved to a lower altitude to live longer when oxygen was required for continued life. I have moved from cities as the air quality made life tougher and damaged my lungs. Some fear of moving, or fear of risk, remind me of someone who would not take antibiotics or oxygen because its not normal, or the side effects suck. What's the difference between some antibiotics (side effects of going deaf and stumbling) with huge risk and TX. Both are options worth the risk when the options narrow and the path to continue the adventure of life requires tough choices.

This may sound a bit harsh, yet some choose life and love the fight, others choose the known and familiar.

Great examples of drive and quest for life are Allen and Lori Morris Hughes, both have/had one heck of a fight and quest for more sunrises. Inspirational at least to my way of thinking.

CF 55 TX cepacia
 

supermanfan

New member
I have CF, and May 11th will be my 9 year transplant anniversary. I would highly recommend it for anyone who starts loosing lung function. Remember there is no cure for CF, and a transplant is the only choice to continue life for those who get too sick to keep going, and sadly enough even the best people with great will to live die from the disease. It is very important to talk with your doctor once you see the lung function going down, you never want to wait until it is too late. Another poster said her friend died while waiting for a transplant, and the doctors said she was just too sick. I too had a friend who was never sure about transplant, but then she got real sick, and reality hit her; sadly she never recovered.

Transplant is a good thing. It is a necessary thing now days since the discovery for a cure is stagnant. It revived my personalitly, and brought me a new life, a life without struggling to breath, a life without constant coughing, and hospital visits; it was the best thing (besides marrying my husband) I ever did! I urge everyone to spread the word and get more donors out there. Transplant is the right decission if you want to continue living.
 

supermanfan

New member
Allie, I don't want to come off rude or anything, but why on earth would you guys decided no? I mean was he depressed and not wanting to live anymore? I can't see wanting to just die... and with a wife and child... wouldn't anyone want to see their child grow up? Sorry, but to me his decission was wrong. Moving temporarily is not a big deal when you compare it to dying. I would be mad at my husband if he just gave up and didn't want a transplant to continue living. Sorry, but that's how I see it.
 

littledebbie

New member
Wow, Uhm, I actually have made my decision. I guess i should have made that clear, sorry. I made my decision a few years ago. The transplant is not right for me.

I have to say I think it is very narrow minded (and a touch judgemental)to say "Certainly better than giving up, curling up in a ball, and dying".
I have never taken the easy or passive route. I have always made my own decisions, popluar or not, smart or not (hind sight is beautiful). I have always tried to do what was right for me. Quality of life has always been first for me. I have always thought there are 2 ways this disease could defeat me. One I may not have so much control over, but the other more insidious defeat would be to let it consume so much of my thoughts, spirit and sense of self that I lose something more important than my life, me.

For some they would not be risking themselves this way. I would be. None of us have had it easy, we all have of our complications. I went through the work up, got the bottom line and decided, it's not a match for me. It was an informed decision. My family and friends know this and they respect it. I was just hoping to meet someone else who had felt the same for whatever reasons. With everyone always chatting about how great they are etc. (which they are - i am NOT anti-Tx ) i was just looking for someone who could maybe relate with me.

EB24-Thanks, glad to hear from you. I'm 26 and my PFT's are smiliar.
 

Emily65Roses

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>supermanfan</b></i><br>Allie, I don't want to come off rude or anything, but why on earth would you guys decided no? I mean was he depressed and not wanting to live anymore? I can't see wanting to just die... and with a wife and child... wouldn't anyone want to see their child grow up? Sorry, but to me his decission was wrong. Moving temporarily is not a big deal when you compare it to dying. I would be mad at my husband if he just gave up and didn't want a transplant to continue living. Sorry, but that's how I see it.<hr></blockquote>

It really was Ry's decision. And Allie being Allie, decided to support his decision despite what it meant. They fought about it more than much of anything else, but it was Ry's decision. Most people wouldn't understand that, but Allie did. She wanted to make sure his last... days, weeks, months, whatever... were how he wanted them. She made it so that he could die at home, for instance. You can fault Ry for it if you really want (though he's not here to defend himself, keep in mind....), but if it was Allie's decision alone, she wouldn't have been against moving for it. And Ry was much like me, from what I understand. Strong-willed, stubborn, all that. He wanted to die on his own terms, and Allie gave him that opportunity. I think that's pretty special.

And you're entitled to your opinion, but keep in mind Allie didn't ask for it. She shared her experience because someone else asked. She didn't start her own topic and say "Ry decided not to, what do you think of it?" So it was really quite irrelevant. Sorry, but that's how I see it.
 

anonymous

New member
Wow, to say one was depressed is kind of out there a bit. I feel that until you've walked in one's shoes you shouldn't judge on what they should or should not do or have done. Ry made his decision and even if Allie would have wanted to go against it, the doctors would not have done so. And of course he would rather be here with his wife and his child watching and enjoying everything she is doing with Allie. I feel that was a little harsh and out of line. cfmama
 

Allie

New member
I'm going to try and chalk all you said up to not thinking that response through. It was Ry's decision because it was Ry's body. But you may not be grasping the full enormity of the situation. We would have been uprooted entirely across the country, where we'd never been and knew no one, I would have gone with him, lost my job, we'd have had nothing, lost the house more than likely, and IF he got lungs in time, he had cepacia, and the transplant was just as likely to kill him as not.

Knowing all this, he decided to stay at home. I supported him because he was my husband and I loved him, and no one, not even you has the right to judge him as 'depressed' 'not wanting to see Ahava grow up' or anything like that. I never asked you for your evaluation of Ry's mental well-being.

Moreover, you need to think of what you say to people. Did you ever think that saying something like that might hurt? That it might do more than push your transplant, that it involves real people with real feelings? God, talk about mental well being...

I'm sorry, but that's how *I* see it.
 

supermanfan

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>littledebbie</b></i><br>Wow, Uhm, I actually have made my decision. I guess i should have made that clear, sorry. I made my decision a few years ago. The transplant is not right for me.



I have to say I think it is very narrow minded (and a touch judgemental)to say "Certainly better than giving up, curling up in a ball, and dying".

I have never taken the easy or passive route. I have always made my own decisions, popluar or not, smart or not (hind sight is beautiful). I have always tried to do what was right for me. Quality of life has always been first for me. I have always thought there are 2 ways this disease could defeat me. One I may not have so much control over, but the other more insidious defeat would be to let it consume so much of my thoughts, spirit and sense of self that I lose something more important than my life, me.
[/quote]
What are you talking about consume your thoughts, spirit and sense of self? The disease will eat you up. You know how much better I feel since I can do anything I want? I have more in life now than I ever had. That is what's beautiful. Hind sight is only 20/20, not necessarily beautiful


For some they would not be risking themselves this way. I would be.


Risking youself? What are the options? Death. Are you talking religiously? Cuz when you get down to the nitty gritty life is what matters, not your religions.

None of us have had it easy, we all have of our complications. I went through the work up, got the bottom line and decided, it's not a match for me. It was an informed decision. My family and friends know this and they respect it. I was just hoping to meet someone else who had felt the same for whatever reasons. With everyone always chatting about how great they are etc. (which they are - i am NOT anti-Tx ) i was just looking for someone who could maybe relate with me.



EB24-Thanks, glad to hear from you. I'm 26 and my PFT's are smiliar.<hr></blockquote>

Why would anyone chose not to keep living? Having a transplant doesn't take away from you; your spirit, or personality, in fact I'd say it makes it stronger, but again my opinion. I feel sorry for your family and friends; I really do, that is just sad to know that you would rather let the disease comsume you. The only thing I can think of why you would feel that way is if you are religious, and you believe a transplant will take your spirit away, or something. When sickness comes in play religion is completely out for me. I believe it's great for someone to have faith; I believe it makes them a stronger person, to be able to handle the things in life they are faced with, but also I know what it's like to loose someone close when something could have been done, or at least every option taken. As I said in my opinion, or maybe I didn't make that clear, I call it giving up.

I say this becuase I had a friend that thought the same thing until she got very, very sick, and by then she was sorry because she never really understood what it was like to be stuck in a house not able to move becuase you could'nt breath, or have to be hospitalized so much. Unfortunately reality hit her hard; she realized it was very unbearable not to be able to breath, and I'm talking at 20% lung capasity to where you can't even walk, and are on oxygen; she decided she still hadn't done all the things in life she wanted to do, but by then it was too late fore her. She was too sick, and died.

I was married before my transplant, and my husband gave me strength. You know I couldn't bare thinking of the sadness he would have if I had died. I don't say that because I'm c0cky about how much he loves me, but I know how much he loves me, and I love him the same way. Maybe you don't have something so wonderful to hang on to, but you can always find new things with a new restored life. Life is worth the try. Ya, sure something might happen during the operation, but that is slim, and even if it did then I'd say your chances weren't very good to begin with.

Again, I said I didn't want to sound rude, but I was shocked that someone would decide not to have a transplant and just die. Especially with a wife and child.

No need to jump on me and call me narrow minded. I just can't see it or understand it. I have done so many things since my transplant... more than I know you have done! I have been in your position breathing, and I was limited to extents, and it only got worse. Again there is no cure for CF.

Good luck!
 

Emily65Roses

New member
<blockquote>Quote
<hr><i>Originally posted by: <b>supermanfan</b></i>
<blockquote>Quote
<hr><i>Originally posted by: <b>littledebbie</b></i>
Wow, Uhm, I actually have made my decision. I guess i should have made that clear, sorry. I made my decision a few years ago. The transplant is not right for me.







I have to say I think it is very narrow minded (and a touch judgemental)to say "Certainly better than giving up, curling up in a ball, and dying".



I have never taken the easy or passive route. I have always made my own decisions, popluar or not, smart or not (hind sight is beautiful). I have always tried to do what was right for me. Quality of life has always been first for me. I have always thought there are 2 ways this disease could defeat me. One I may not have so much control over, but the other more insidious defeat would be to let it consume so much of my thoughts, spirit and sense of self that I lose something more important than my life, me.

[/quote]

What are you talking about consume your thoughts, spirit and sense of self? The disease will eat you up. You know how much better I feel since I can do anything I want? I have more in life now than I ever had. That is what's beautiful. Hind sight is only 20/20, not necessarily beautiful





For some they would not be risking themselves this way. I would be.




Risking youself? What are the options? Death. Are you talking religiously? Cuz when you get down to the nitty gritty life is what matters, not your religions.



None of us have had it easy, we all have of our complications. I went through the work up, got the bottom line and decided, it's not a match for me. It was an informed decision. My family and friends know this and they respect it. I was just hoping to meet someone else who had felt the same for whatever reasons. With everyone always chatting about how great they are etc. (which they are - i am NOT anti-Tx ) i was just looking for someone who could maybe relate with me.







EB24-Thanks, glad to hear from you. I'm 26 and my PFT's are smiliar.<hr></blockquote>



Why would anyone chose not to keep living? Having a transplant doesn't take away from you; your spirit, or personality, in fact I'd say it makes it stronger, but again my opinion. I feel sorry for your family and friends; I really do, that is just sad to know that you would rather let the disease comsume you. The only thing I can think of why you would feel that way is if you are religious, and you believe a transplant will take your spirit away, or something. When sickness comes in play religion is completely out for me. I believe it's great for someone to have faith; I believe it makes them a stronger person, to be able to handle the things in life they are faced with, but also I know what it's like to loose someone close when something could have been done, or at least every option taken. As I said in my opinion, or maybe I didn't make that clear, I call it giving up.



I say this becuase I had a friend that thought the same thing until she got very, very sick, and by then she was sorry because she never really understood what it was like to be stuck in a house not able to move becuase you could'nt breath, or have to be hospitalized so much. Unfortunately reality hit her hard; she realized it was very unbearable not to be able to breath, and I'm talking at 20% lung capasity to where you can't even walk, and are on oxygen; she decided she still hadn't done all the things in life she wanted to do, but by then it was too late fore her. She was too sick, and died.



I was married before my transplant, and my husband gave me strength. You know I couldn't bare thinking of the sadness he would have if I had died. I don't say that because I'm c0cky about how much he loves me, but I know how much he loves me, and I love him the same way. Maybe you don't have something so wonderful to hang on to, but you can always find new things with a new restored life. Life is worth the try. Ya, sure something might happen during the operation, but that is slim, and even if it did then I'd say your chances weren't very good to begin with.



Again, I said I didn't want to sound rude, but I was shocked that someone would decide not to have a transplant and just die. Especially with a wife and child.



No need to jump on me and call me narrow minded. I just can't see it or understand it. I have done so many things since my transplant... more than I know you have done! I have been in your position breathing, and I was limited to extents, and it only got worse. Again there is no cure for CF.



Good luck!<hr></blockquote>


I only read part of supermanfan's response... but it was ignorant. So littledebbie, I just wanted to say... that I support your decision. Not that you know me, or it matters, but there it is anyway. It is a personal decision each of us needs to make. And each of us needs to make it for ourselves, not for anyone else. If that's the decision you wish to make, and are at peace with it, then good for you. I wish that you're as comfortable as possible while you're here.

Oh and... to assume Ry just didn't care enough to stay around to be with Allie and Ahava... would be laughable except that it's soooooooooo rude. And I might add, ridiculously incorrect.
 

Allie

New member
Not to mention cruel.....again, did you THINK??? About how it might make other people feel? Empathy? I mean, I know you haven't lost your husband, but the wound stays raw for a little while. I stand by my statement of you being totally uncouth and just....mean. Nothing like attacking the dead.
 

anonymous

New member
It is normal to be scared when going for a transplant. I was very scared but realized that I wanted a better chance at life. I received a double lung transplant in 1996 and did great for nine years and I had one year with Chronic rejection. Got on a list again and a year later received another double lung transplant. IT was harder the second time being in the hospital but as soon as I left the hospital, I have been feeling better and better each day and I feel as good as I did when I was doing well the first time. I believe that to succeed we must be determined and have a goal and never give up no matter how hard life seems to be. Sincerely, Risa Gans and by the way, I got married twelve days before my transplant the second time around. 46 yrs txbuddies@yahoo.com
 

supermanfan

New member
People, I'm trying to understand why someone would choose not to have a transplant... knowing that CF has no cure, and it will eventually kill you.

You know what I hate most? When people say someone's post was ignorant, or stupid, or call that person stupid. That is actually being ignorant yourself. Some very important things to remember: Just because someone doesn't agree with you doesn't mean you are right, and they are wrong.

I'm nost saying not having a transplant is wrong, but I can't understand it. If you give me a real good reason for your choice then great. But I also can't understand choosing to leave a wife and child. Military men get killed in the line of duty. Their full intentions are to return home, but there is a risk. However they do everything they can to make it home, and sometimes it doesn't work. With not choosing a transplant you are not giving life a chance, and doing everything in your power or medicine's power to come home.

So, no I don't understand that option at all. I cannot fathom it. Again, I can't bare to think about my husband's sadness loosing me, and I couldn't bare loosing him.

I understand your concern about being uprooted Allie, but many people come to California for transplant. The UCSD transplant center has a house they house people and their families waiting transplant. It's all on donations. I myself gave to them (the house).

I also didn't judge him 'depressed'. I asked if he was depressed. Again not understanding why someone would want to stay home and die. I expected you to help me understand, but instead you post something as if I'm a horrific person. No, I'm not horrific, I just don't understand taking that stance.
 

Emily65Roses

New member
You are entitled to think not having a transplant makes no sense. That's not what we were calling you down for. You were being RUDE and MEAN about it. You can say you don't get it without being disrespectful to the frickin dead. Pay attention, it's not that hard to understand.

Allie, if this continues too much longer, I say we give up. She's not going to comprehend what the hell it is we're saying. And besides, I think Ry was great, and clearly the German b*tch opinion is the only one that matters!!! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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