More bad news/ not much left to try

Carol, I want to drive up there and just slap your SIL. What is her problem! I'm glad you have a good plan for leaving and for moving to Arizona where you'll be in a healthier environment, both physically and emotionally. What I don't understand is why on earth don't they want you to leave? Are you doing too much there, like cooking, and making them more comfy? Three months will pass before you know it and then you'll be on your way. And you won't be any farther away from all of us cyberbuddies. You have enough to worry about without having to deal with them Carol, and I'll be so happy when you have moved.

I hope you can get some peaceful rest today.

Love,

Pat

I can't say don't worry Carol, but going to a transplant center for eval has helped so much and they will figure out exactly what's going on! I know you can do this. You have my email if you need anything. If you run into problems with having someone to take care of you or something or logistical problems as a factor in your care, please let people know. Even if the problem seems insurmountable, it can be overcome. There are whole networks of people in the same boat, and there are good decent people who will go above and beyond the call of duty to help someone, because someone did the same for them. Im' praying every day for you and it's gonna work out. You will not only get better care for your disease and real diagnosis and testing, but you will get what you need for your lungs. they will send you for so many consults with really good people and do really sensitive testing. I'm so glad to hear you doing better. I'm just so glad that finally you will get a good evaluation and care. We don't even know how good care can be, most of us. Listen, on the SIL, you need to be in a stable place near the transplant center, if you can swing it. Or with a good relative that is dependable and will be willing to do some sacrificing. Sometimes teenagers or older people can be the best because they really try and take it seriously, whereas busy working people get burnt out. I don't know about your brother, but you need to have a talk and repeatedly, to drive home how serious this is. It might be time to find a lung transplant forum, and there are ones. I found a liver one. They can tell you about benefits and stuff available for people who are single and are in need of a transplant and need support. I can do some asking at the liver forum, but like one thing that came up is that a man was frantically trying to find a place to live with his wife near the transplant center (as near as possible) and people stepped up and helped. One story popular is that a man needed a transplant, but didn't have a relative that would or could commit to the care he needed. So on the forum, he met another man in the same boat. They made a contract with each other that the one would take care of the other during his post transplant time, and when the other man needed help, the one who'd had the transplant would come help him. Over this, they became friends, like an old married couple, both had faithfully fullfilled the contract and were there for each other. There are lots of people in this same situation. Relatives tend to flee or become psychotic during these times, so many people with family even have trouble. Talking to people facing your same situation, and it is complex, is really helpful. I thought it was like a tonisilectomy, but there are whole lists of requirements they want you to fill to be eligible. The main one is that you HAVE to have a no-nonsense decent caretaker whos going to take care of you after. And things could happen fast or slow, you don't know.

Here's some lung transplant forums:
http://www.transplantbuddies.org/html/forums.php
http://www.chestnet.org/about/links/lungTransplant.php ---Important resource site
http://copdforum.portalone.us/

There are programs available to help transplant patients, I just don't know about them. Like I said, please let me know if the living situation gets bad and be sure to keep positive during the evaluation about your living situation. I would go without the SIL or anyone that might give the impression that they might not help you properly. Better to go alone back into the treatment room to talk with the doc if your sil is with you. Please communicate with us if you are having problems. There are really decent solutions, and everyone here I know is rooting for you and will do what we can. And, there are resources out there. Much love to you now and lots of prayers, Carol. I hope you checkout the sites I posted. You will find lots of specific answers there and maybe even some people who are ear you going through the same thing.

Hi Carol,

What part of Arizona are you moving to? I just recently moved from there, and I had a great rheumy in the Phoenix metro area. If you have not found one there yet, I would like to suggest to you to check into Arizona Arthritis & Rheumatology Associates. They have a great group of doctors that don't treat you as though you are a hypocon., and will do everything possible to help you.

(((Carol))) I wish you all the best.

Robin

www.azarthritis.com

(((((((((( Carol )))))))))))) I was away for a couple days, but am back home again. Of course you are still in my prayers sis. I think about you often. It's like a butterfly lands on my shoulder and I say a little prayer for you sis. I imagine you resting in God's mighty palm. Very peaceful indeed!! Some hot tea for you!!! I'm sorry you have more waiting to do *again*. * sighhhhhhh * That waiting is such an energy zapper. I hope your brother and sil will make plans to attend your dr. appointments. That was a great idea. Yes!! A nice pot of hot tea!! It's beautiful china Carol . . . . red roses! Sip carefully so you don't burn your lip!! I made some pecan sticky buns for you too!! Enjoy! Hugs, prayers, and . . . . Blessings!

Good morning Carol!  I'm sending you cyber hugs and prayers.  I hope your day is better.  In-laws are a pain in the patootee. 

 

Love

ginny