my prayers are with you as you go thru this journey.
interesting, as my dr's have never given me that option (or lung reduction)----as many of things i am learning there are options on this forum not from my dr;s
i was told there was no "cure" for this and i just had to consider myself "terminal".
i also have never been told what "stage" i am in, just that i'm moderate to severe.
thank you for the info you can give.
if you don't mind my asking, what "stage" are you in and what is the cut off limit? is there an age limit?

I agree! Prayers are with you --- it's very nice to journal this -- alot of us want to know-- the good, bad, & the ugly

I was also being evaluated for Lung Transplant. Gone through all the testing twice now. I have severe COPD but doctors at the Cleveland Clinic say I am not bad enough yet. One of my problems is I am over weight. They say I have to lose 15 to 20 pounds before my next visit. Bad thing is I start losing have a flare up they put me on strong doses of steroids and back up with weight and extra pound or two. Can't win.
I wish you the best of luck and look forward to your journal..

I wish you the best in your journey thru this. I have finished all testing and was told I was not ready, that I was to nervous a person, and they did not feel I had a good support for aftercare. So I will not be getting my transplant. Also another DS sister was refused at the last moment because of brittle bones.
They are very strict, and I pray you get there. Keep all appointments, make sure you have a good support group at home to care for you afterward and get you back and forth to appointments . I did, but ......
Also make sure you understand all the things that could go wrong, and are strong enough to handle them. I have read and researched enough about lung transplants to probably assist the doctors. lol That is one thing that got me in trouble, because me doctor said I had trust issues and should listen to only what they say and not be doing research like I did not believe them. He also told me to give up my daily strength support group because reading every day about people I have come close to hurting and dying, keeps me upset and worried. The cut off age is usually 65, but this hospital goes to age 70. So he has given me 6 months to "convince him" to give me the transplant. then I will be 69.
I am not trying to take over your post, just be careful. Mine started out great, and turned into a power struggle of sorts.
I do pray you make it, just do not tell your doctor if you do any research. God bless you
Brenda

I read your journal and I wondered from now until you get on the list, what is that time frame? Thank you letting us take this journey with you.

Can't wait to read. Being evaluated for lung transplant at Duke University in NC. I have bronchiolitis obliterans My interview is Nov. 1rst. Nancy

Hi Kyleesnan,

I spent time reading this blog. Its actually made me think about getting this procedure. Hope it helps. The best of luck.

copdandlvrs.blogspot.com

have a blessed day...

Keeping you in prayer and thought.
Prayers and good thought for all of our members going through this.
With much love,
Linda In CA

May have to get rid of that bird Gray Parrott if you decide on a lung transplant. I have no idea if I will make it completely through the process, they have a lot of hoops for you to jump through. One thing in my favor is my pulmonary doctor here in Portland did his training at the University of Washington (where my interview was). He would not have sent all the gathered information he obtained if he hadn't thought I might be a successful candidate. It is scary. I am in late stage COPD very severe. I was diagnosed as very severe when first diagnosed in 2007. I have forced myself to remain active and because of that have done fairly well. I have just refused to let this disease completely rule me. To answer some of your questions, I don't know what the cut off age period is. They didn't say. One lady at the support group said she had been on the waiting list 6 years. She was the only one with a long wait time. Don't know what her story is. Sherry and Brenda, my prayers are with you, let me know how it goes. They let me know that right now they wanted to complete the testing to see if I was ready now or whether they needed to watch me until I was ready It sounded like they weren't going to drop the ball on me even if it isn't a go right now. Who knows what will pop out when they test those 20 test tubes, lol. Ladybug, keep me posted! Captstt, when my doctor started this lengthy process he had LVRS in mind, when evaluated I didn't qualify for the LVRS so he decided to send my records to the UofW for their input. UofW called me and told me I needed a lung transplant. Thanks for your support Granny. More will be revealed. Hang in there all. Sounds like several of us may be going on similar journeys.

thanks for sharing with us. wow bj, doctors can be so egotistical. i think you are all very brave to take this on.

I applaud your decision to go for it. I know that you have researched this thoroughly and know that there are land mines along the way.

If I had not been passed over because of age and circumstances were different, I would be doing what you are and that is trying to gain a little leverage with this situation.

I will hold you close to my heart and hope that this is a successful journey and that you do make it to the "ring" for your most important fight.

Love you,
Anna

How many years do they tell you that you can gain with a LT? My Dr. mentioned it to me. I researched some, and from what I seen, most people gain 5-7 years of life from a LT. That is with no rejection issues...
Am I right about only gaining 5-7 years?

Answer to livnnirnin,
A person COULD gain 5-7 years, but nothing is promised. When I went thru evaluation, they stressed that this is not a cure, but rather trading one set of problems for another.
The younger and healthier you are, the longer you might survive. I have pen pals that are still going after 5 years, and can live with the side effects, and others that are sorry they ever did it, because of the side effects, and other diseases that can crop up.
Rejection is an everyday fear, as that could happen anytime, but for the first 6 months to one year, you are closley monortered by your doctors so they can head it off , if possible.
Your chance of skin cancer and lymphoma goes up drastically after transplant because for the rest of your life you have to take anti rejection meds, which totaly supresses your immune system. You have about an 80% survival rate the first year, then it decreases to about 50% or less the 5th year.
My doctor said "no promises" but he can say I would have a better quality of life for as long as I survived, if that were a year or how long. With all the bad things that could happen, I was still willing to chance it, but they said I was not ready.
It is not a decision to take lightly, it is major surgery, and for double lung, takes about 12 hours and you would be on a heart lung machine. And, after it is done, it is done, you can not change your mind.
My problem was I was to worried about things, according to the doctors.
I also applaud any one that is brave enough to be willing to do this, and hope and pray she makes it to the "list".
It will be an entirely change of lifestyle after surgery, and you need to know the risks that can come up , and be close to your doctors. Most problems , if caught on time, can be dealt with, with a hospital stay and meds.

So GO LONG KyleesNan!!! Hang in there and never give up.
Brenda

Thank you very much for your reply bjrapp. It definitely is a hard decision to have to make. I, too, wish anyone that makes the decision to have a LT all the best. You are all in my prayers daily. I read alot here. I just don't post often.

KyleesNan, I don't qualify for a lung transplant, it was never on the list of potential solutions for me. But for folks such as yourself this will be a long and sometimes painful journey. Remember each step of the way you have your friends here on the list that will give their complete and total support. I wish nothing but the best as you go down this path. Please take care, Bill