More bad news/ not much left to try

I hate to dump this on you but I am so upset I just want to say this and get it out and over with. My appt was today with the pulm. He said I had more than 2 spots on my lungs. once looks like a small area that has collasped but nothing I would even feel. I also have one very close to my heart and one very deep. My head was spinning and I wish i had not been alone because someone needed to be able to ask questions and remember answers. He show me the paper that was approved by the plantsplant team that they would take a look at me. Than he hit me with the rest of the story. They will not even try to get me listed with spots on my lungs. because what if it's somthing that will attack my new lungs. Than he told me that any biopsy would have to be done from the outside because of where they were located. Unfortunately even if he could find somone that was willing to do the biopsy my chances of living through it were very low. He told me that because of where they were my lungs would probably (drop) whatever that means. and as bad as my lungs are it would take 30 mins. to repair and he would give me 60 seconds survival rate. The only thing left to do is a PET scan. I have to have that on monday. Even a pet scan won't get rid of the spots but I'm just doing what ever I can. He said that even if we can prove they are scar tissue or something that the transplant won't be hurt by they still won't take me but they will just come up with some other excuse. So basically I walked out being told I am gonna die and there isn't any thing that can be done.

I didn't even know how to write this and I will try to hang in there and do what I can. I just feel so bad for my son. He's 28 and already lost he dad when he was 19. I hate to be a drama queen or a downer I just felt I needed to let everyone know what was happening.

Love ya guys

carol

Sorry you have to go through this, but don't give up.

I'll keep you in my thoughts.

This sounds like the most frustrating thing in the world. You are very strong. I hope that everything works out. Best of luck to you and your family. Be persistent and don't give up!

(((((Carol))))) I'm sorry you are going through this. I will keep you in my prayers.

((((((((((((((( Carol ))))))))))))))) OH NO!!! OH NO!! OH NO!! Oh Carol . . . I am SO sorry you got SUCH difficult news. I'm absolutely breathless. Carol, I know that you are a believer . . . I hope that you will feel the prayers being offered on your behalf from each member here who is also a believer . . . I pray that God will give you peace. A peace that will absolutely bathe you in warmth. There is a little saying that I tell my grand when she is terribly frightened by a thunderstorm . . . . "Sometimes God calms the storm . . . but sometimes God allows the storm to rage, and He calms the child." Carol. . . you are such a blessing to so many on this forum. I really want you to know that we are praying for you sis. Hugs, prayers, and . . . Blessings!

I didn't even know how to write this and I will try to hang in there and do what I can. I just feel so bad for my son. He's 28 and already lost he dad when he was 19. I hate to be a drama queen or a downer I just felt I needed to let everyone know what was happening

I do not even know what to say.  To me you are holding up pretty good with such bad news.  Thinking of your son instead of just yourself, tells me that you think of others before you think of yourself.  But you know what they say about crashing in an airplane.  give yourself the oxygen mask first, and then place one on your baby's face.  You may have to do something similar to this.  Today you have been given news that anyone in the world would be devastated by.  It would have me so devastated that I probably would be speechless, thoughtless, and emotionless.  I would probably find myself with a mental shutdown.

I am so sorry for this news.   And if anyone in the world has the right to rant, it is you.

Please keep us posted as to how this progresses.  Will send prayers your way.

Hester

I have found out that the people on here really do care for everyone on here whether they know you well or not. Carol your not being a drama queen your being a person who is scared and needs someone well I don't know you well but I am here to listen if you need someone..You are in my thoughts.

((((((((Carol))))))))) I'm sitting here in tears for you right now. I wish I could be there with you to go to your appointments with you for some moral support. I like Patty's idea about a second opinion. You are certainly not a drama queen. You are such a wonderful person and very loved by people who have gotten to know you on this forum and we will always be here for you. I hope you can feel all of our positive thoughts and prayers that we are sending to you. Lots of love and hugs, hippi

Hippi and ginny, I'm sending you huge hugs! Thank you so much for your friendship and for your prayers. Yes please continue with your prayers. I hate to say this but I am afraid. I just need to figure out how to deal with this better than I am. The dr. called today and they rescheduled my pet scan for the 29th because they said they couldn't get my insurance taken care of in time. So now I have to wait an extra week. I have a dr. appt on the 30th but I don't know how long it takes to get the results of the pet scan done. Well I am notthinking to well right now so I'm gonna go. I am just so greatful to have you all to help me get through this. if there is anything I can do for you please let me know.

love ya

carol

Hi Carol,

I hope you're making it through these days ok. Are you sleeping well without your pain meds? I know it's going to be a long weekend for you till your scripts come in on Monday and I'll be thinking about your more than ever.

It's really lousy that you're going to have to wait another week before you go in for your pet scan. You'll get the results as soon as a radiologist reads the scan and writes his report. I hope he doesn't waste any time. Wat is the appointment on the 30th? Was that already on the books or do you suppose that's to give you the results of the pet scan.

Hang around here Carol and let us be here for you. Let us know how you're doing and how you're feeling. I'll call you this weekend

(((((Hugs)))))

Pat

((((((Carol)))))))
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.

I'm there, Stacie. Sending you good vibes Carol. I'm so relieved you are approved for the evaluation. This is such good news. Much love to you Carol. I'm rooting for you. You'll get through this.

Marji, Stacie, Oldrebel, Thank you all so much. Marji you really said alot of things I really needed to hear. Thank you for sharing you experience and your strength with me. Stacie and OHR, thank you for your prayers and kindness. Please also prayer that I can find another place to live really face. If I stay in this house I will go absolutely nuts. My SIL and I got into a real ugly fight again yesterday.