Had my pulm appt. really feeling down.UPDATE

I'm not even sure why I feel depressed but I'll tell ya what happened. First my lung function used to be 23% now it's up to 29%. I was thrilled. He was not. He said I need a lung transplant. I have to go to hospital tomorrow for a ct scan of my lungs. He said if there is any lupus or scleroderma or anything in there he will see it. He's trying to hook me up with a transplant team in OKC Oklahoma city. He said that they may or may not except me because I have been on steroids and my bones are thinning. He said I would always have to be on autoimmune supressants if I got the transplant and if I have bone problems already it might cause them to think twice. Also he said my heart has some stiffening because of the blood trying to push into my lungs. I have to go to physical therapy every day. I don't have a clue where there is a place to get that around here. . I don't know. He really didn't tell me a lot of what I didn't already know but I just got really depressed over it.

Please either pray or send good thoughts. What ever your beleif system is that at least they don't find lupus in my lungs.

Thanks for listening

love and prayers

carol

Oh Carol ((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))))),

 

I just had a good long prayer and talk with God for you.  I do pray that you receive good news tomorrow.  I'm so sorry sweetie.  It's natural and okay to feel depressed and anxious about this. To not feel that way would be unusual to say the least. 

 

El said something very wise. We have to take our victories as they come.  I agree with her. The fact that it's not getting worse is a victory.  Maybe that means you don't have lupus in them!  We'll pray that you don't. 

 

As for the physio, I'd ask your doc for some recommendations on where to go. Use their resources to the max. Get as much out of them as possible.

 

I'll keep you in my prayers Carol,

 

Love you,

Ginny

((((((((((((((Carol)))))))))))))))))) Please know that you are in my prayers. I'm on my way to church tonite and will say a prayer for you! He is in control! Love ya, Judy

Hey Carol,

Prayers from my house to yours.  I agree that there is a victory there if your lung has improved.   Hope that things will go well for you in your physical therapy. 

Please keep us posted as to what is happening with you, and how you feel about it.  Sometimes if we can just name a feeling and tell someone, it helps.

Hester

Oh, Carol, I wish I was there right now to give you a hug in person and to help you through all of this and help you find a place to get physical therapy. I certainly understand why you would be depressed after hearing all of that. Even though you already knew it, it makes it really real to hear it from your doc. I pray that things are good enough with your lungs that they can do a transplant. Please call me if you need to talk. I wish I lived closer. I'm always here for you though - all of us here are. Take care of yourself. Since you already have Rosie's tea, I'm sending you some fudgsicles. Lots of love and hugs, hippo (oops, I mean hippi, even though I am as big as a hippo)

Okie, are you sure it's COPD that you have? If you have scleroderma, it could very well be pulmonary hypertension (NOT the same as your normal everyday hypertension), and there are several drugs used to treat that, none of which appear on your list. Sildenafil (yes, Viagra), is a first string treatment, or a similar drug, Cialis, is taken only once a day. There are other SQ and IV drugs that are used in more advanced cases and given via a pump, something like an insulin pump.

Hi RN,di,(welcome to the group),Ginny,Hippi, Pat, Hester,Robin, Judy, Rosie, El, I hope I didn't miss anyone. I wanted to thank everyone for the thoughts and prayers. It really helped me last night. I did go to chuch last night but I had a hard time concentrating. My CT scan isn't until 1:30 but the doctor office wants me to go in early for an alpha 1 test. I think i alredy had that and it was neg. but I'm not 100% certain but hey what's 1 more blood test right? LOL.
I think yesterday bothered me most because I had already been told I had 8 yrs. Well 8 yrs could be a life time. I think what scared(scares) me is what if I do get this transplant and somthing goes wrong? I could be dead 6 months from now. I kno I shouldn't think that way. And somtimes I'm so sick it almost sounds like a welcome thing but when push comes to shove it's scarey.
Well I'm going to lay back down for awhile. These tests are taking it's toll. and I have to leave in 2 hours. YIPPY.
I'll let ya know when I get back. I'm sure I won't know anything. It'll probably take a few days.
Love ya all
Carol

Ok update, I got the spiral ct scan done it was a piece of cake but the blood thing was a little worse. it took 4 tries to get a vein with anything in it. Not that that is uncommon for me. He finally took it out of my hand with a butterfly needle.

So I feel better today. thank you all so much for your love prayers and support. Even you hippo! I won't know anything until probably monday. I will let you know though.

I do have to share an experience I had today with you though. Iwas running out of oxygen at the hospital. So they brought me out some. It was liquid oxygen which is not what I use. So when I went in the back I sat down while the lab tech was trying to explain what was going to happen. I had the o2 on my lap. All the sudden I felt what felt like burning on the inside of my thigh. I jumped up real quick! For those who don't know(like me) liquid o2 is like dry ice. The tech started laughing once she knew what happened. It didn't burn me or anything it was just that sudden jolt and not knowning what it was. So anyway You know when you are standing outside in the cold and the breath looks like smoke coming out of your mouth? As she starts explaining to me again what's going on I have this smoke coming up from between my legs for about 5 mins. She couldn't even talk while I'm setting there trying to fan the smoke away from me. It was somthing I will never forget!

anyway thank you all again for your love and support

Carol

Carol, I'm glad that's finally behind you, and I'm not surprised that you found something to laugh about. That's our Carol. I hope you have a restful and pain free weekend. We'll all be anxious to learn what you find out on Monday. Hang in there and stay away from that crazy SIL and brother of yours!

((((Hugs))))

Pat

Carol,

   You gave me a good laugh just trying to picture your experience with the smoke..... . You always make us laugh even when you are going through a rough time.....((Hugs)).

   I hope you find out something soon. Take care and keep us updated. You are still in my thoughts and prayers.

                                                                 Love, Babs

Hi ya Bab's and Rosie, thanks for replying. Yeah it was pretty funny. I was hoping to get my results back today but I havn't heard anything. CT scan on thursday, tech said monday but . Oh well I'll call them tomorrow and see what is going on. I'm just going to believe that no news is good news. Than maybe I can get some more info on the hospital in OKC since I forgot the name of the place.

love ya guys, hope you are doing well