How to broach the subject of lung transplantation?

[anonymous]

Hello, I am the mom of a beautiful 21 year old daughter who has CF. L. has both lung and pancreatic involvement. She has averaged one "tune up" a year for the past 10 years. Her pulmonary function test show that she has 40% lung function. L. works 30 hours a week caring for a young boy. She has always been the focus of our lives and we have always tried to encourage her to" keep looking ahead". Recently, the doctors brought up the subject of lung transplantation and how L. should consider getting on the transplant list as it could take up to 2 years before one became available. L. did not want to hear that and flat out told me that "she didn't want a lung transplant." Her dad and I have always made the medical decisions for her and we both voiced how we really wanted her to "live" and if there was a chance that a transplant might give her more time to lead maybe a "healthier" life, why wouldn't she want that? She said, "I don't want to die on the operating table and anyway I don't want to talk about this anymore." L. then changed the subject. I respect her right to her own choice, but what if she becomes sicker and she needs a transplant within the next 6 months, then what? As I said before her dad and I have always made the medical decisions for her in the past and now she should have her say. Should I continue to bring this up with her or should I just respect her choice? Either way, I'm damned if I do and damned if I don't!!!!! I hate feeling so helpless and would give anything to trade places with her, I even looked into giving her part of one of my lobes, but she won't hear of that! I do have faith, but trust me this dilemna sure tests it! I'd appreciate hearing from anyone going through something similar. Thank you, K.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[anonymous]

Hi K, I understand that you want your daughter to live as long as possible. First, give it some time. Spend time educating yourselves together as a family. There are plenty of people here post transplant who could share their stories. You're daughter is most likley afraid and none of us like to hear that we're getting worse. Tell her that you know that she is a smart, responsible woman. Let her know how important it is to you that you find out all the facts and then make a decision, and that you will respect her decision. It's hard to sit back as a parent and watch your child make decisions about their own health, but it is something you'll get used to. Each time we go to the doc, we get told how someting new is wrong, how a med we've been on for years is doing more harm than good, that there's a new bacteria, new meds to do, ...ect, ect. It's really, really hard to deal with. Keep communication open and try to stay calm. Let her know about this site. It's really been great getting to interact w/ other folks who understand.Debbie23 w/ CF

 

[AbsintheSorrow]

It's a hard choice. In the end, you're right, the decision is hers to make, but at the same time, it sounds like she isn't giving you guys any time to voice anything good about it. I've always said that once I get down to a transplant, it'll depend on how much extra time they give me, what kind of odds there are, etc etc. And I don't love the idea, but I won't shut it out either. See if maybe she'll talk to someone in the CF clinic about it, or the website is also a good idea. And as much as I'd say keep the topic open, don't push too much either, or then she might feel attacked. So it must be a hard place to be, but try to keep the idea open without being too pushy, I guess. I don't know exactly. Ahhh!!

 

[anonymous]

you are right (as others have reiterated) it is her decision. BUT dont panic, i cant remember the statistics, but the majority of people say no or dont want to hear about Tx when it is first brought up. so this isnt the be all and end all. maybe she could speak to other people, on the list, or who have had transplant. its true the earlier you get on the list the better, but at 1 tune up a year and with an LF of 40% i dont think that there is a dire rush. my LF is 35% at the moment, and i have IVs about every 3 months, and i have been told i dont need assessment (hopefully) for a year or 2 yet. being approached for Tx is a very frightening thing; you are forced to see (maybe for the first time) that you are mortal, and that this disease could well beat you. that is very hard to accept mentally. she may just need time. i would be honest with your feelings on the subject, but be clear that you value her opinion equally. keep us updated, hope things work out <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mustangmousa]

Hi, I'm sorry to hear that you're having to deal with this difficult decision. I myself am going through some hard "transplant" times. I was listed on a transplant list in 1996. At the time I was not all that sick, getting cleanouts once a year, my FEV1 not too bad, maybe around 40%. My CF doctor wanted to make sure I was on the list accumulating the 2 years or so BEFORE I got sick enough to need one. I stayed on the list for a couple of years and then was called by the transplant center. They told me I was near the top of the list, was I ready for a transplant? I was still way too well for one then, so I said no. They sort of sidelined me, so that I still had my 2 years of waiting time, but I was inactive on the list. They said when I became sick enough for a transplant, I would become active on the list, and would be near the top because of my 2 years already accumulated. Many years went by without me ever even thinking about transplant. However in the last couple of years, I have gone downhill. My doctor mentioned that he thought I was getting close to transplant. I freaked out, thinking no way am I ready, I still feel ok even though I'm on oxygen all the time, even though everything is a challenge, getting dressed, taking a shower, walking, bending down, you name it, my FEV1 is now around 23%. The transplant center thinks I still have another year, hopefully, but I am scared to death!! I think, is this really what I want?, the statistics don't look that good, how long am I going to live?, i don't want to die. But then I think, if I don't get a transplant all I have to look forward to is getting worse than I already am. At least with a transplant, I have a real chance at having some good years (however many that may be) possibly living a longer life. Every day they get better at transplants, and they develop better treatments and drugs. I wanted to tell you too, that my transplant team has told me that most people make it through the surgery, the majority of problems faced by cystics is rejection and infection of the new lungs. I just wanted to tell you my story to let you know there are other people who know what you're going through. I still feel totally lost and unsure of it all. Some days I think, no way I want one. I think it is a personal decision. It may not be the right choice for everyone. Let your daughter think about it, maybe she will come around. Doctors don't want to give you false hope, so they tell you the bottom line, but there are lots of cystics who have lived a long time with transplanted lungs. There are lots of support groups out there to help you too. Good luck, I wish you and your daughter the best.Martha 29, CF, CFRD

 

[anonymous]

The options given to me were simple... Die trying to save my life, or Die and doing nothing to stop it. With the first it was explained to me in the clinic, that a very small percentage actually ends up dying on the operating table. Personally, to me just giving up wasn't an option. My doctor told me that basically if I wanted to live to see my 18th birthday this is what I had to do. I do it or I will die. Since I really don't like the thought of death my only option was transplant. It's been a year now, and I'm better than I ever was before. ~CandiceImmortalGoddezz

 

[RadChevy]

K, Your daughter is having a very normal reaction to the subject of transplant. I know that when I heard the word tx, and it was not referring to me, but another woman I knew, it sickened me. I said to myself "never would I do that". But as time went on, my lungs got worse and when my doctor said the words to me "transplant, you need to get your foot in the door, or the door will shut on you", it wakened me up, but I was still "never". But the words coming from my doctor were reality and it slowly began to sink in and I started asking about tx, reading about tx, investigating tx. About 6 months after my doctors said those words to me, I was listed for lung tx.Yes it is up to her whether she will do a tx. But the important part is getting listed. Get listed and then think. You can go inactive on the list, you can remove yourself from the list, but at the present time, accumulating time on the list is the important step. ( Lung Allocation may be changing in the next year, but that is just a proposal).There are many sad stories about lung tx, but more HAPPY stories. I put together a book about lung tx success stories ( I will include my web site and the book web site below). Also, learning about the process, asking questinos about what fears you have, move you forward. Your daugther is worried about dying on the "table". That does occur, but very rarely. Doctors don;t want you dying on the table and more deaths would occur later on , by infection, or rejection. But again, the majority of the folks get through the surgery, recovery and go on to lead wonderful lives, lives they cannot even dream of pre tx.Being your daughter is at 40% right now, she is really too high to get listed, unless you find a center who would do it. But most lung tx surgeons know the wait is anywhere from a few months to a few years. They do not want to put anyone at risk too soon, and they will not list generally until 32% is reached. So your daughter has time on her side. Also living lobar is a possible choice, should things decline fast and her wait is too long.Be sure your daughter is doing all her treatments, doing the newest and most proven drugs ( like zithro, colistin etc) and that should help keep her healthy longer. Also physical therapy of some kind. Volleyball, walking, biking, whatever she can tolerate and try to improve on will help her keep her lung function.I had a lung tx in 1997 and my sister in 2001. Doing great and doing stuff we never thought we could.Happy to chat anytime with you or your daughter, just email me any time. The info on the web sites is below.luckylungsforjo@aol.comJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/

 

[EmilysMom]

We have always left most decisions up to our daughter....Emily is almost 21...Since it's her life,we have always felt that when she reached the age of majority, it should also be her decision. She asks for our input and our opinions on everythng, but then makes her own decisions on things. She has made many choices on issues already dealing with her death....She wants to donate organs and tissue and whatever they can use for research, no one is to wear black to her memorial service...rainbow colors only (anyone with black is to be turned away), she will have in place a DNR order, etc.So when the topic of transplant came up, the obvious path was again to talk about it and then the choice wil be hers to make, dependent on her health at the time, how much ectra time she'll get, whether it will be valuable time, etc. etc. etc.I think the choiceof transplant is an individual choice to each person, each family.<img src="i/expressions/present.gif" border="0"><img src="i/expressions/heart.gif" border="0">