We are in the hospital in New Orleans for a "tune up" and Parker's doctor is talking about having him evaluated for a lung transplant once he is doing better. He wants them to make the evaluation to see if it is time to start looking at those ideas or do we still have some time to wait and see if we can move on without needing a transplant. Does anyone have suggestions, ideas or feedback? I am not even sure where to go from here other than collecting information from every possible source I can find.
Doctor suggesting evaluation for transplant
- Thread starter jimiv
- Start date
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Mommafirst
Guest
I really don't have any personal information but I know there are a few moms that used to post on here whose kids were young when they went through transplant. I also believe Amber (beautifulsoul) was young and may be able to give you some insight for your son. There are many adults on the site that will probably be more helpful than some of us parents can be.
So sorry that this is the step your doctors feel should happen next. Getting lots of information is probably the best idea.
So sorry that this is the step your doctors feel should happen next. Getting lots of information is probably the best idea.
farmfamily
New member
We were in your shoes exactly a year ago. We still haven't gone for evaluation but getting ready too. In the past year I have really educated myself, a lot of reading the transplant forum on this site. It really took awhile for us to wrap our heads around this. my son is older than yours, he is 19 and had just made the transition from pediatric to adult center.
Mom of three two with CF
Mom of three two with CF
I have started working to wrap my brain around this. We have felt like we are in a hopeful foot race with research to out run the transplant option. VX-809 can not come to market fast enough. We are hopeful. One thing that helps me is my son's godfather is an ER doctor who gives me unpolished information about my options so I can try to look at things clearly. Right now his pulmonologist are suggesting the first places we consider for evaluation is Ochsner in New Orleans (start here since we live only an hour away), Baylor Medical Center, and Pittsburgh Medical Center. I think I need to learn a lot more to see what makes sense. The other wrinkle is his mother (we have been divorced since he was 6 months old and he has lived with me since age 5). She is a Canadian Citizen living as a resident alien here. She has been trying to talk him into moving to Canada. He does not want to go so in my mind that ends it. More to come.
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semperfiohana
Guest
Which Ochsner are they suggesting? I only ask because I go to Tulane and my doctor goes between Tulane and Ochsner. My doctor, I don't know if he works with peds though, does lung transplants at Ochsner.
Well, Parker is responding to treatments and the doctors seem to be backing off of the "transplant" talk. they are going to keep him in the hospital for another week or so to see how much more can be done to improve his lung function. I really get tired of this roller coaster of moving from needs for serious care and pushing the 'drama" button to more routine care. i guess this is trudging the road for happy destiny.
beautifulsoul
Super Moderator
Hi there,
This is Amber (Heather mentioned my name on the first post) Keep us posted about your son's progress. I hope he is able to re-gain enough strenth to back off the transplant process for at least a while longer. I was transplanted when I was 15 years old. I'll be 21 this summer. But, I will quote Jonathan <strong>"'Also, keep in mind that they like to list early, as it can take years for a match to be found. I know people who have been listed and then gone "inactive" as they either stabilized or improved.'" </strong>I waited around 2 years for my transplant. In addition, I was on the "inactive" list for 4 months. If you get to the point of transplant talk again and would like someone to speak with about questions, concerns, etc. feel free to Private Message me on the site or e-mail me at: newman.a710@gmail.com
Best wishes to you, your son & your family
Keep your head up <img src="i/expressions/face-icon-small-smile.gif" border="0">
This is Amber (Heather mentioned my name on the first post) Keep us posted about your son's progress. I hope he is able to re-gain enough strenth to back off the transplant process for at least a while longer. I was transplanted when I was 15 years old. I'll be 21 this summer. But, I will quote Jonathan <strong>"'Also, keep in mind that they like to list early, as it can take years for a match to be found. I know people who have been listed and then gone "inactive" as they either stabilized or improved.'" </strong>I waited around 2 years for my transplant. In addition, I was on the "inactive" list for 4 months. If you get to the point of transplant talk again and would like someone to speak with about questions, concerns, etc. feel free to Private Message me on the site or e-mail me at: newman.a710@gmail.com
Best wishes to you, your son & your family
Keep your head up <img src="i/expressions/face-icon-small-smile.gif" border="0">
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cfowler
Guest
I am curious as to the "do it now" statement noted above. I flucuate around %25 to %28 FEV1 and doctors suggested going to talk to DR's about an evaluation for lung transplant. The Dr's at shands told me they would not do the evalutation until its definitely time fora transplant.
I asked about just having the evaluation done now and be inactive and they said no, because I would have to be revaluated if it was still several years beforeI need a transplant. So they wont do the evaluation unless I have to have a translpant right away... this is at Shands hospital in Gainesville. Even though my FEV1 is low, its stable and my quality of life is still good and I still work a full time job without any issues. I am in the hospital about every 6 months now.
But I was definitely taken back by they wouldn't do the evalutation until its absolutely necessary, my thing is it might be too late if we wait that long.. :-(
I mean at that low of FEV1, it could possibly only take one real bad episode and I may need a transplant... you never know, but they dont want to do eval until its time becuase they said if I did the eval and didnt get lungs within two years, I would have to do the evaluation again.... Thoughts?
I asked about just having the evaluation done now and be inactive and they said no, because I would have to be revaluated if it was still several years beforeI need a transplant. So they wont do the evaluation unless I have to have a translpant right away... this is at Shands hospital in Gainesville. Even though my FEV1 is low, its stable and my quality of life is still good and I still work a full time job without any issues. I am in the hospital about every 6 months now.
But I was definitely taken back by they wouldn't do the evalutation until its absolutely necessary, my thing is it might be too late if we wait that long.. :-(
I mean at that low of FEV1, it could possibly only take one real bad episode and I may need a transplant... you never know, but they dont want to do eval until its time becuase they said if I did the eval and didnt get lungs within two years, I would have to do the evaluation again.... Thoughts?
Getting the assessment/tests done doesn't mean he is necessarily going on the list soon. there is alot of the early testing that can be done and held for quite some time. This has been one debate I've been having my self, but I've got a ways to go be-for they start talking transplant with me. I also don't have the issues of being a teenage and have completely stopped growing. So that in and of it self may make the tests more time sensitive to getting them done the closer be-for you end up on a transplant list. I hate to say this and I'm vary likely out of line here and if I am I'm sorry, but at 14+ odds are your son may have his own opinions on things. In any case its alot to think about and I wish you the best of luck.
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RytheStunner
Guest
Every center likely has different policies. I've been on the transplant list for over 7 years, and inactive for 5. My center has never said anything about being re-evaluated again if I was inactive for several years. I still see the team once a year and we do the critical evaluation tests (6-minute walk, ABG, etc.) to keep my records updated. It only takes the matter of minutes for a person to be reactivated from the list, there's really nothing special that needs to be done. A quick call to your coordinator and you can be reactivated immediately.
Well the good news is that Parker was discharged from the hospital Friday. He is tired and worn down but his lung function is better. His pulmonologist is going to qalk over his file to the transplant specialists after the 4th to see about setting up an assessment. More to come as we go.