I'm so sorry, will be praying for you.

Sorry the TX didn't work out. I pray the LVRD will come off. It's a far less complex and dangerous surgery...

Hugs,
Dennis

Good Morning Pat.
I just wanted to say that the lvrs surgery would not require any anti rejection meds I think, so you may still have that option.
Please do not let this send you in to a depression. Keep fighting this disease every day. Keep your options open, because you never know what God will bring you . I could not have the LVRS because my emphysema was all over my lungs, but if yours fit the criteria, that may be blessing in disguise.
Also talk with your doctor about other options, studies, new meds, ect.
Blessings to you and your family
Brenda

In both cases, they have to spread the ribs apart to get at the lungs, so I am not holding out too much hope for that either. Rehab will help, but they do not want me to exercise at home yet, until they find out much too up my O2. They had me on 15 with a mask and I still went down to 75 on the recumbent bike.
I am already on depression and anxiety meds as well as Calcium and Reclast once per year. I don't think there is much more modern medicine can do.
Has anyone heard anything about Peroxide? It seems you either inhale it or to a nasal spray.
Thanks for all your good thoughts.

I don't think the spreading of the ribs has anything to do with the rejection, so that shouldn't impact the LVRS. As Brenda noted, it has to do with where your lungs are damaged. I know it's hard to remain positive when you've just been shot down, but it seems like there may be still be a good chance of qualifying for LVRS.

If you're near a larger city, I'd also check the clinical trials web sites, too. I think the drug companies have finally decided that there are so many of us with COPD that there is a fortune to be made if they find something that keeps us going, so there are probably lots of new meds coming down the pike.

So sorry to hear your news. I am hoping and praying you will be able to have the LVR. You always have a family here. Don't give up hope. My heart goes out to you.
Love and Hugs

Pat, I am so terrible sorry. You will always have friendship love and support in this group. Don't give up yet. Please hang in there -- Take care, Bill

Pat,
I think we have discussed the peroxide thing before, maybe someone else could remember more than me, but it is not anything that helps copd or brittle bones. It could also be dangerous. If you are on 15 liters of oxygen, which is the way I read your last comment, then you definately qualify for something, and it will not hurt to persue the LVRS. Have your doctor explain exactly how it is done, and it might be something they can manage. Never give up honey, yes it is scary, dissapointing, and frustrating, but there has to be something the doctors could find for you to help you. Be as proactive as you can, and do what you can. If you can not exercise at home, that is ok, do what you can at rehab. Please keep us updated,
Hugs
Brenda

Pat, I'm sending lots of prayers your way and I hope that rehab helps. Hope that the Drs get the depression under control too since it makes everything feel worse I know.

Love and hugs, Cindy

I am very sorry that you did not get the news you wanted. Come on DS anytime and share your feelings. Blessings to you.

I am so sorry to hear about your rejection to the transplant team..I just have a few questions...Your age and what type of insurance do you have..The reason i am asking this is I have talked to 8 different people who have been rejected due tp brittle bones, not enough care givers and age.....This may be a blessing in disguise.keep up your exercise...shots and please stay away from sick people which includes sinsus infections..As I always say..I was given one year over six years ago..Do not give up ..When God closes one door he always leaves a window open..Take care Joanne..

i'm so sorry that you got bad news ((((HUGS))))
what is LVR?

Beechnutt, I hope you do not mind if I jump in here, I am 68 years old and my doctor said the age limit has risen to age 70. I know you asked Pat that question, but just wanted to interject that. I know a few folks that have been turned down because they did not have a good support system. I was told they were not happy with my support system, which includes 3 sane, sober, adults living in my house ready to do what ever I need done!!! Then they said I was not ready because I was to anxious, and worried about things to much. I never even made it to the board like Pat did!!!
But as far as the brittle bones, at my hospital the first of the test is a bone density, so you would think if someone had real brittle bones they could tell, and not wait until the very end to dis qualify them. Maybe I do not know how it works, but I know more now than I did when I started this.
I hope things are working out for you, and yes I agree it is probably, in the long run, a God send. These folks are professionals and know the before and after of transplants, and I guess they have to be certain of good results for them and the patient.
I am sorry, did not mean to sabotage the comment, and where you and she lives the age limit may be different, but I think this was set by UNOS. As far as the brittle bones, the mega doses of steriods that a transplant patient takes will make osteoporosis worse, so that may be their reason.
Thanks
Hugs
Brenda

Jarca, LVR is Lung Volume Reduction surgery, and it works by cutting out the infected top or bottom of the lungs and leaving the less infected. That only works if your emphysema is mostly all at the top or bottom. Mine is spread all over, so that option is out for me.
My research, when i was considering it, says it usually reverses its self in about 4 years, but that gives someone 4 years ....
Hugs
Brenda

ty brenda= once you said it i remember hearing about it. my pulm fibrosis is all in the bottom--does it work for that? ;)
---and to give me 4 years is what i've already been given so i guess i'll take the 4 without surgery recovery LOL
gwapo= i agree that it would be nice to have an open chat room that all could participate (not the one person at a time) sometimes i have so many questions and feel guilty if i make a post too long.
zenobiagar-i find it odd that they give people steroids that make their bones brittle, then refuse to do a transplant because of that---rather stupid when i think of it & once again my heart goes out to you,