Deciding not to transplant...

[anonymous]

For those of you who are at the transplant point (low FEV1 or have been advised to consider transplant), and have made the decision NOT to transplant, I was just wondering how your loved ones handled your decision? Any helpful hints for preparing loved ones? Also, for any loved ones whose friend/family member decided not to transplant, what would have helped you to accept the decision easier? Thanks!

 

[LisaV]

My late husband decided not to go for transplant. I'm not sure how helpful what he did/said would be to you though since he was in his 50s when he made that decision. (Which means he was way past what they had originally had said would be his life span.)

He explained it to me that he just wanted to make sure he was alive until his kids were adults and that he was pretty sure he could pull that off without transplant, but that with transplant (which would have been when his youngest was a teenager) he couldn't be sure he'd make it. (His brother-in-law had a bad experience with heart transplant where the heart "took" but their was some brain/memory damage because of lack of O2 during surgery.P) Also, he'd had enough in some ways and it wasn't just his lungs that were the problem (constant severe chronic pain). And he figured that there would be someone youner who could benefit from whatever lungs he didn't go for....

What helped me accept his decision was my enormous respect for him. I thought from day 1 that he had the right to make medical decisions for himself - that it wasn't my call. I understood what he was saying. No one could ever say he had done anything but fight to stay alive and productive all of his life.

I have no idea how he (or I) would have felt if the need had come when he was younger.

 

[JazzysMom]

I am hoping Allie will respond to this since Ry decided against it. I can only imagine making the decision either way. There is so much to consider & until I am at that point I cant say I would opt for the tx. Some people (ruthless & mean spirited in their remarks) have judged people who choice NOT to tx. To me its similiar to choosing to having chemo etc with Cancer. Its a lot to go thru with no guarantees. Or you are trading one set of problems for another. Although we have many successful tx CFers on here that are many years post tx, we have also lost many shortly after tx. One thing that has to be remembered is that it is not a CURE for CF. Its a bandaid for the lungs & a bandaid that can have reactions. Some people say that if you dont get a tx you are going to die early....well yes those chances are good! SO knowing that....would you want to go thru it all with the POSSIBILITIES of having extra years (barring any complications)! Hmmm decisions, decisions!

 

[katyf13]

I will address this question honestly. If Mike decided not to get the transplant, I would be furious. Mostly because of the selfish reason that I don't want to live without him. Doctors have told him that without the transplant, he has maybe 2 years left to live. If there was a reason for him not to do it, if his chances at survival were really low for some reason, I would understand if he chose not to. It would be really hard for me and it would take a lot but I could accept it. Since his chances are very good (and he wants it so badly) I am still terrified about the surgery, I know it's a gamble, but he has dreams he wants to come true.
Let me clarify that I would NEVER judge anyone for choosing not to go through with the transplant. I think the one thing, as a loved one, that would help me accept it is if the odds were really against surviving the surgery. Two years is better than no years.
I feel for you in making this really difficult decision. When it is a gamble, like this surgery, it is so hard to know what to do.

 

[IG]

I know a conversation like this has come up earlier. Maybe not this exact one but something similar to it. I would definitely try searching the site to see what you come up with.

I really can't answer this question as obviously I am post tx, but there are a handful of reasons. As melissa said it's not a cure. You're just trading one set of circumstances for another and hoping that it turns out alright. For some people it's as easy as this; death with no chance at life, or a chance at life with the risk of death. For others the concept of transplant is not so cut and paste. We all have our reasons for doing what we do, and should not judge another person because of them. For me, transplant was the only option. I've stated this before. I'm scared of death and don't want to die young. The only way to prevent that was having a transplant. So, that was my option. Other people vary in their opinions.

I just hope this thread doesn't become a flame war with the whole bickering issue, and people realize that we're all entitled to our own thoughts, opinions, beliefs, and decisions.

 

[IG]

wait here's the link.
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=5219&STARTPAGE=2&FTVAR_FORUMVIEWTMP=Linear
">http://forums.cysticfibrosis.c...R_FORUMVIEWTMP=Linear
</a>

 

[Debi]

First, let me say I am happy to see that so far this thread has been wonderfully free of judgement and sarcasm. As someone who is directly in the middle of the decision making process, I am appreciating the civil discussion of the pros and cons. I am 54, long past my life expectancy. My doctor and I have had frank discussions about Tx, and he is great about not pushing either option while giving me the facts. At this point, I am not opting for Tx. I have concerns about the lengthy time away from home, having to constantly be on guard about getting sick post-tx and what that would mean for my quality of life, lengthy recovery period and its impact on my family, etc. Although I am on O2 most of the time now, I still maintain a rewarding full-time job and active (relatively speaking) family life (no more camping, tennis, etc). I hate the thought of giving those up for a year or more for a 50/50 chance at best of making it through a tx. Still, as medicine progresses and as I read posts on this site, I find my mind is a bit more open to the possibility. I am sure my age plays a major factor in my decision making process, since younger people generally recover better from surgery anyway. My family has been intimately involved in discussing the issue with me, and, while they don't want me to die, they also don't want me to lead a life that is so restricted I won't consider it of good quality. So, thanks for the continued discussion and the frank input from those on both sides of the decision. Bless us all!

Debi
54 w/cf

 

[BigBee]

My Dad decided against a tx for many of the same reasons that Debi listed. For the most part, he spent very little time in the hospital and, for him, the restrictions imposed by a tx far outweighed the potential benefits (again for him). He felt being away from his beloved farm, staying in a hospital, the drugs he would have to take, the chance of failure weren't worth it to him. He also felt very strongly that lungs being so scarce an oppotunity for tx should go to someone younger than him.

As his daughter, it was intially tough for me to accept that door closing. But I knew my Dad and his heart and realized it was absolutely the right decision for him and for his family. When all was said and done, not having the tx allowed him to have the kind of life and death he wanted. That gives us all peace.

 

[thelizardqueen]

I know that I'm nowhere needing a transplant yet, but I have thought about whether I will actually take one or not. Like others have mentioned, you're trading one set of problems for another one. Plus with all the anti-rejection meds you have to take ON TIME, I don't know if I could do that. I have a habit of forgetting my regular meds once and awhile. I guess I can only decide that once I'm there. That being said, if I've lived a long life i.e. 40s or something, maybe I would opt for not getting it done. I really don't know.

 

[littledebbie]

First let me say, I will not be in anyway put in the position of
"defending" my choice.  I am responding solely for
the benefit of the original poster to share my experience for what
it's worth.   Not to enter into a debate with anyone on
the merits of tx. Also, I want to make it clear I am not against
tx.  I went through the evaluation process and considered all
factors and made the best choice for me based on my circumstances.
 I don't think anyone should think they are going to know if
tx is for them or not until they have been evaluated done research,
interviewed people etc.  It's not something you can decided
what you'll do until you are at your crossroads.<br>
<br>
That said.  Obviously I am not choosing tx.  The entire
time I was being evaluated I was being quite clear with my family
that I was also evaluating the tx option for me.  The team was
poking around me asking questions and I was poking around and
asking questions right back.  During the evaluation process
there came a time where I just stepped back and did a little
inventory on what they were telling me I would have to do.
 The  pre tx things they were recommending, the things
that were going to make tx for me difficult the compliance I
would need, the lifestyle after, the long term effects.  The
cost vs gain was not in favor of a Tx for me. <br>
<br>
I just started with my Mom since she's my main person and the one
who has been, well the only person really swinging at CF with me
this entire time.  I felt she deserved a bit of a say.
 She has a lot invested here too.  So we talked and I
think I basically laid out the things I was feeling.  My
fears...which were not actually about the actual Tx, more about
other issues involved.  Laid it all out against the realities
of not having a tx.  And then my Mom said it was okay.
 She trusts my decision and hadn't wanted to color my decision
but had actually had a lot of similar concerns I was having.<br>
<br>
From there I casually told my dad possibly over the phone.
 That I wouldn't be continuing with the Tx team anymore, i had
decided that it wasn't the right choice for me.  tried to let
him know that if he wanted to talk about it I would be okay with
that but the decision had been made and I would discuss it with him
but not "defend".  I am adamant about this not
defending thing because the way i see it this is MY life, no one is
more affected by my decision than me.  I have worked very hard
to keep myself going all this time and make a life for myself so I
have earned the right to this decision.  And on this one I
would only accept love and support from my family.  That's it.
 If my Mom could give me this I knew I wouldn't accept less
form the others.<br>
<br>
It's important to remember that family just doesn't want to lose
us.  Tx to them can look like a cure or at least the last
ditch effort that they think everyone should take..sort of an
automatic.  I found it helped to remind people of exaclty
what tx would mean for me.  The side of tx that is not so
focused on in the happy articles in newspapers etc.  The
serious surgery that it is.  the many factors involved in a
successful tx.  The fact that tx is not a guarantee.  I
kept in mind that they really just love me and want me to be around
as long as possible and it's good to keep that in mind so you can
be a patient as possible as they come to grips with your choice. I
think that today there is an assumption that we will of course Tx
if we are able.  Like it's not really a decision to be made.
 Just give them some time to step back and sort of shift gears
form what they thought was probably an automatic thing for you.
 There was a lot of tears involved in some of these
discussion, I would recommend kleenex.  But there was laughter
too.  This is just a hell of a thing to have decided.
 All we can do is try to do what's best for us and be there
for our family as they come to terms with our decision.  My
Mom and Dad sort of filtered the news to the rest of my family I
believe.  My Mom has  a bit of a large group so I
appreciated not having to tell them all myself.  <br>
<br>
Now when someone asks if I am going to Tx, say a co-worker or
whatever and I don't want to get into I just tell them i was
evaluated but it was determined I was not a candidate for Tx.
 I know it's a bit misleading but I don't think I need to
share all the details of one of the biggest decisions of my life
with everyone who asks, and well it was determined I was not a good
candidate...by ME.

 

[Joanne]

There are many reasons to not choose to have a transplant. I respect people who both choose to do it, and those who don't. It truly is not for everyone. Hopefully doctors and medical professionals will respect your decision and treat you with respect and just be sure they offer you all the support you will need, and whatever kind of support you will need.

There are different groups who say NO to transplant.

1. They say NO when told they need to look into it, and they stick with NO later on.
2. They say NO when told they need to look into it, but then change to MAYBE.
3. They say NO when told they need to look into it, bu then change their mind to YES.

These decisions are based on experience and encounters with fellow patients, friends, family members, opinions and attitudes and beliefs of significant others are strong determining factors. Psychological and psychosocial reasons - "I will make it without a tx"or even, "I live longer without it."Medical reasons - think their health is better than what doctors believe.

The NO - NO group - initial refusal remains but pursue improved nutrition, increase in physiotherapy, set up exercise program. Follow medicine precisely and reduce work load.

The NO - MAYBE group -Initial no after awhile perhaps, not now, maybe later, after holidays, after Christmas etc. These patients change mind often. They refuse tx when their health improves, and near acceptance in case of deterioration.

The NO - YES group -Initial no, changes suddenly. Something significant happens - This can be dramatic deterioration, tremendous loss of quality of life, falling in love, finding exciting job, may make a patient to make an effort to go on living.

I was saying right up to the time they rolled me into surgery " I am not sure I want to do this... and told the OR people - I have a little cough, it will go away" Right!!!

Joanne Schum

 

[anonymous]

Some great replies to this subject. Debbie you are quite right, you should not feel you have to justify your decision to anyone who asks out of idle curiosity.

My med. Professionals have not deemed me a likely candidate for a transplant. I'm happy with the decision to take my old lungs with me<img src="i/expressions/face-icon-small-wink.gif" border="0"> My CF has fluctuated over the decades. I'm sure I am a utter challenge to my dear Chest Specialist. Debi {54}, I relate to your letter, I am your age. I feel I am realistic enough to understand I have made it thus far and every new day is surely a blessing for us.

Life is precious, regardless of what side of the fence we sit, we are all pretty brave, when one considers the ammount of decision making we CF people have to make in our lifetime.

Cyber group Hugs,<img src="i/expressions/face-icon-small-smile.gif" border="0">

Eileen.

 

[anonymous]

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

I am hoping Allie will respond to this since Ry decided against it. I can only imagine making the decision either way. There is so much to consider & until I am at that point I cant say I would opt for the tx. Some people (ruthless & mean spirited in their remarks) have judged people who choice NOT to tx. To me its similiar to choosing to having chemo etc with Cancer. Its a lot to go thru with no guarantees. Or you are trading one set of problems for another. Although we have many successful tx CFers on here that are many years post tx, we have also lost many shortly after tx. One thing that has to be remembered is that it is not a CURE for CF. Its a bandaid for the lungs & a bandaid that can have reactions. Some people say that if you dont get a tx you are going to die early....well yes those chances are good! SO knowing that....would you want to go thru it all with the POSSIBILITIES of having extra years (barring any complications)! Hmmm decisions, decisions!</end quote></div>

As he did chose no, i think he also had capecia which limited his choices.