I'm so so sorry about this news and your lungs. It is awful to hear that kind of news. But docs can be wrong. They gave me year to live in 1993. Hah! but they did really mess me up by misdiagnosing me and giving me the wrong treatment, thinking I was dying.
I hate to say it, but your doc had no right to say such negative things to you and make assumptions about what the team would do. YOU ARE APPROVED! That IS GREAT! It means you get a whole new level of really really good care you never knew existed. You will be surprised about what they can do. These are docs that like a challenge!
He's probably just jealous. He sounded very negative as if he were trying to discourage you from even being evaluated. Maybe he'd rather have you rack up bills and expenses with him and believe he is the be all and end all, but you need to do that evaluation and start dealing with those docs and ditch this guy as soon as you can. How awful to say that to you. It's not over till the fat lady sings. After all, what was your doc planning on, waiting to see you after you got rejected for the transplant and telling you "see, I told you so"?
Sounds like mind games. Maybe he just wants you to be really happy when they agree to do it so you follow all the rules and don't goof up. Who knows.
Maybe when you see the transplant surgeon like I did, I had one evaluate me--they totally went against a lot of things I'd been told by my other experts. They are really good. They have to be. They may just say that your old doc was full of crap, you never know. Your doc might have just been having a bad day, maybe his wife left him and he took it out on you. I just can't imagine a doctor telling a patient what a transplant team will say before they have even evaluated you!!!!!
I would definitely want to hear this news from the transplant center, not from him. The way Mayo does it is you contact the transplant center directly and they do all the evaluation, not another doctor, because the transplant surgeons know what they need. Also, different centers have different requirements based on their expertise. Mayo for example prides itself on being able to use alot of donor organs that less skilled surgeons couldn't use and they do a really thorough scan and test and procedures. So one center might say no while another may say yes, once they figure out what it is and if it is a problem. They have much better equipment and they are the ones to make the decision. Remember that if they can do a transplant, they may be better at doing difficult biopsies or other surgery.
I go to a liver transplant surgeon for my liver now, and I don't need a transplant. but as my disease progresses he will be fully aware of my situation, and my liver.
My dad has a collapsed spot on his lungs. He is seventy and runs five miles. They are watching it. It hasn't grown or changed for years. He did smoke for a long time in his youth and worked around chemicals and pollutants. They don't know what it is, but it isn't changing. Possibly it is a scar from a past infection that is resolved and will not come back.
Lung pictures are not real clear, they make mistakes all the time, and without knowing what it is, how can they know if it is something ttreatable. Also, people with hep C get liver transplants all teh time. They know the virus will attacke the new liver. But sick people have a right to life too.
Please don't give up, Carol. There is a way. Docs have made mistakes before. Let them do their evaluation.
I'm so sorry I'm so bubble headed, Carol. I'm just all mad and sad and worried for you. But I know you will get to the transplant place and be okay.
I feel so bad this is happening to you and you deserve a big chance to cave in and realize what's going on and to deal with your feelings and I wish I could be there to comfort you or try to make a joke to make you smile but I'm half "duh" right now if you can't tell by this post.
Here's another (((hug))) and if you are interested, email, I know alot of people online who have had liver transplants and are sick with all kinds of diseases that are killing the new liver, but they get some time out of it. And there's no "what if" when it comes to this stuff. They WILL find out what it is on your lungs, its their job. I know you will worry, but try not to think the worst yet. You will be surprised about how cool the transplant place is. They'll find your lost car keys and everything. Just try not to worry.
I'm praying for you and all that stuff. Let me know how the transplant place is and anything else.
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn