I bet you feel shaken up, but why do you feel it is the only hope to live?? There are many of us who were declined or refused transplants like Brenda here......I was refused the first consult with my Pulmo....and yeah it shocked me.....He said 62 was the Maximum Age, PLUS.. I was not strong enough and needed to put on much more weight...My Lungs were riddled all over like a Sponge so there was nothing else available for me...Zero Options....That was Jan.2014 and i was sitting on 22%.

Then in 2014 they were trialing a new Valve called The Zephyr Endobronchial valve.....I got really excited, only to find that the 2 People that i spoke to in Jan this year ended up not too good...One Lady had them all removed, ended up on Oxygen and her condition went backwards....The other guy had 4 valves removed and had them replaced in Feb....His only report was a few words saying all went well and he felt OK....BUT then i found out i was'nt suitable for the procedure anyway, so why worry...HA

After 3 years at around 22% the two hospitalisations in Dec n Feb was due to blockages and not infections...SOOOO if i was a daily Prednisone Regime, i could have quite possibly avoided the Inflammation Culprit and loss of 4%.....

But i am slowly fighting back..I will never regain what i lost but i am coping well enough to enjoy my life...Who knows if i had an operation or not...there are no guarantees whatsoever....

Take your gift of a transplant and go for it but if you get refused..it isn;t the end of the road by any stretch of the imagination....

When your time comes then it comes....Until then enjoy the gift of life itself....Luv ya Peter xxxxx

BTW....Here is a Link that has most of the Current Options....
http://jtd.amegroups.com/article/view/3496/html

I haven't heard too many good things about the valves either. That is too bad.
I guess I feel i need help (transplant) because I am all alone (no family...only child) with nobody to live with except a nursing home and I would rather not live at all than live like that for the rest of my days. I am still very sick but I am getting a little stronger. Just walked about three minutes and even though it was hard I made it. I only dropped to 89 on 2 lpm setting. I have to kick up to 4 lpm now to shower though. Just had a big setback last Saturday but I am determined to build myself back up again. I haven't had a PFT in a couple of years and the last I heard then I was around 20.
My biggest concern about the transplant evaluation is all the IV steroids I have been on this week. They have regulations about how much steroids you can have in your system when they evaluate you. Maybe they will give my a couple months to get over this attack and then come back for the evaluation. Also I have lost a few pounds (down to about 125lbs...I'm 5'3") but I am making myself eat....hungry or not. My biggest complaint now is pleuracy pain
Yesterday I had my first blood gas drawn....my God that procedure sucks but they said I am NOT C02 retentive. Does that mean that something in my lungs maybe still works? I'm sure someone of you guys knows what that's all about.
Bless all who are suffering, confused and afraid this very moment. This disease is baffling.

Thanks for the info Peter. I hadn't heard of a lot of these therapies. I hope there is something to help me to remain independent. I am not afraid of not waking up....I am afraid of dying all alone in filth and dirt because I have no place to live and no physical energy to care for my self. I live in a senior apartment complex and I am one of the youngest residents but iI have no social life because when iI got home from work all iI did was sleep so iI could get up the next day...6 days a week. I can't afford cable or Internet because I was (note I said WAS) only a part time employee and USPS does not pay too well to part time employees. All I have is my paid for 60" TV and my paid for 2007 subaru Forester and my 3 precious kitties. My postal days must end...especially since I have been working in a moldy building for 2 years. All my money goes on medical bills and supplies and insurance.
I used to love to thrift store shop but I haven't been in one in ages because I don't have the energy. I miss the old ME. I was never the life of the party but the loneliness now is unbearable. I miss going to the grocery store and library and local animal festivals. I am only 62 but when I got sick in 2012 I sank very fast. I could no longer function as a wife so I was asked to move out. I can't even keep up with my 40 year old daughter who uses a wheelchair who has very severe cerebral palsy. I know even with a transplant I will never be like I was before getting sick but I refuse to continue this existence. Before my attack last Saturday i spent over three hours last Friday doing a half assed job sweeping and vacuuming a very tiny 1 bedroom apartment. That totally wiped me out. Next day back at work I almost bought the farm. I will miss my customers and the self satisfaction iI received from my job but I have faith that somehow I will come out of this and things WILL get better!
I'm a long winded old bag ain't I....teehehe. Also I LOVE to laugh! My favorite TV show is South Park. I am not a from depressing person by nature but this disease is changing me and I want the old Sandy back at any cost.

Congratulations on the call! Good luck!

Sandy I pray you get to feeling better and are able to get through all this. Living alone with no help is so very hard. I know that because I live that way.

hi sandy. it was good to see you back on this site, but sad to read what you are going through. i always check in on this site to see what`s going on but seldom comment on anything because i usually don`t have much to add to most discussions. i feel compelled to share some thoughts because what i read about your feelings about life { and death } and this horrible disease were once my feelings also. you once commented that you liked my " blunt honesty. " i hope that is still true because.....here it comes.....just remember, this is how I am dealing with this life. take what you will and leave the rest. you said you " want the old sandy back at any cost. " well, that is NEVER going to happen! i felt the same way about MY old life until i accepted the fact that the person i was before this disease DIED! it took me years to realize that until i could get out of the " anger " stage of the grieving process, i would be stuck wallowing in self pity, unable to move forward. my life motto has always been..EVERYTHING CHANGES.....IT`S ALL A MATTER OF PERSPECTIVE.....LIFE GOES ON.....now, it was the PERSPECTIVE part i was having the hardest time with. so until i could CHANGE my perspective on this LIFE, i was going to continue being miserable. our minds are a lot more powerful than we realize. if we THINK this disease is going to kill us, it probably will. BUT....the opposite is ALSO true. the power of positive thinking? maybe. i guess some people call it " PRAYER. " whatever you want to call it, try it. i am not a positive person, by any means. i am a realist. and the reality of this life really does SUCK! BUT.....i ALSO realize that the power of my mind can make my life tolerable by seeing each day as gift. as cheesy as that may sound, it works for me. i am also not religious, { although i do believe in a higher power universal energy that we can connect with, } i am now re-born! the person i was does not exist anymore. i am now creating that person which i will become. good bad or indifferent, and that choice is mine alone. my hope for you is that when all the " matters of consequence " are taken care of that the NEW sandy will GO to the thrift store and animal festivals and grocery store and library and anywhere ELSE with a smile. { and portable oxygen tank! HA! } BREATHE IN.....BREATHE OUT.....

As usually the case oxyman you are correct. I am coming out of the back side of this attack and laying in a hospital bed for 10 days has made me see almost exactly what you have said. What I talk transplant to the professionals here I can see in their eyes that they know it's not gonna happen but as I feel a little stronger and appetite returning and pain subsiding I realize what time I do still have can be much more than just work and sleep. I am very young and I will most likely get screwed out of a lot of good times but I'll be damned if I'm gonna throw away what I do have left with both hands. And yes oxyman as before I do love your brutal honesty.
As far as the "churchanity" crap and the God of my understanding again you are right on the nose. I still have a will of steel and there are many more laughs and good times a coming....hell it's almost time for a new season of South Park.
Love ya guy!!!!
Sandy
>^..^<
PS thanks!!!!!!

Great Post Oxy.....you ain't dead till you are dead and who knows then...you may graduate to wings and a harp and a fluffy white cloud or you may be playing the fiddle for eternity with you know who..

Enjoy this life while you can....says me..LOL

Hi, Boy I have been reading a lot of posts from you today!! So your call to see transplant team is in March? , not to long now.

When I was in the program, one thing they stressed very quickly was you will have to have someone to take care of you for the first 6 months, and depending on how it goes, maybe for a year.

Some one has to make sure you take your meds, and on time, check your vitals or watch you do it, each day, make sure you are eating the foods that transplant people are allowed to eat, (no more cafeteria style buffets)
and someone has to be there to get you to and from appointments usually 2 times a week for 6 months, and all people being different it may be more or less
. I am happy you got the call and I want you to be very serious about this so every thing will work out for you.

I am glad you are out of that moldy post office, and you should be drawing disability.

OK enough downers, I hope this Easter Holiday is especially happy , and the love of the Risen Christ surrounds you.

HUGS BJ

all my hopes & prayers are with you tomorrow.
whatever happens with the transplant; i wish it leads you to other alternatives.
this is a scary disease, but you have gotten great advice. Keep the positive thoughts going & don't give up!
praying ((((HUGS)))

ps. after re-reading this the thought came that getting out of that dusty moldy workplace may be a blessing in disquise. all that dust & mold couldn't help your breathing.
there are many of us that live alone...thoughts and prayers are with you. :)