Random Thoughts and my BO BFF Club :)

Lots of emotions over the past week. I'm feeling some what better from my latest hospital stay. My chest is still pretty tight and the nights are worse then the daytime for me. I'm also concerned now because I had to drop my prednisone pretty quickly. I've been on 20 mg for quite some time. When I drop to 15 I start to get achy and start feeling horrible and it seems that's when I end up getting sick. Well, my latest hospital stay I was given the IV steroids, which were mega doses...and was sent home on a taper. So I was to do 60 for 5 days, 40 for 5 days, 30 for 5 days, then 20 until told otherwise. This taper should've taken me until the end of June I believe. When my coordinator called me last week she told me I needed to drop sooner then that so I could be listed. I was almost on my last day of 40 but instead was told to go immediately to 20 for 5 days and then to 15. Today was my last day for 20 mg. So I am really dreading what is to come. I pray that it won't be as bad as I think it will be. :)

I feel cut off from the world most of the time and bound to the house with my 50 foot oxygen cord attached at all times. This weekend was our town's festival of Poultry Days and while most everyone was out and about enjoying themselves I was taking up residence on my couch. Not like I wanted to be in the heat and humidity over the nice AC...but the socialization is what I miss the most....and not like I can do a lot of that now because my immune system is so low and I don't want to catch anything that would land me in the hospital! So a little bit of depression here because my life as I knew it never was and never will be the same. Ever. Doug's sister and her family brought some steaks over last night and Doug grilled them and I even went outside to sit (under an awning and had a fan on me!) and eat. It was hot and stuffy, but I hadn't even stepped out of the house in almost 2 weeks! Can you imagine not leaving your house in that long? I couldn't go too far on the patio, but was able to sit outside for a little bit. I was amazed though that while my oxygen was pretty good sitting outside in the heat that my pulse was in the mid 130's just sitting there. When I did go back inside, my pulse did go down to the 110's which was much better for me. I ate too much for dinner; even though my portions are still pretty small. I can't eat a whole lot at one time. Anyway, I ate too much and felt sick for the rest of the night. I was able to get a good nights sleep for once though...probably the best in a long time really. I woke up later then usual and was still tired when I woke up but as the day wore on I felt pretty good.

I got online tonight after Doug left for work and started chatting with Brandi, whom I call my BO BFF. BO is short for my (our) lung diagnosis Bronchiolitis Obliterans. She is the same age as I am, and has the same diagnosis as I do. While I hate that anyone has to go through what I am going through and what she is going through, it is also nice to find someone else going through it to share it with. God blessed me with finding her so we can get through this process together. Someone had created a photo for her on Facebook to pray for her to get better...so I shared it on my wall too. She and I are chatting back and forth and along comes another "lung friend" from our Facebook lung transplant (pre and post) group whom also has BO! So chatting back and forth with her I have also gotten excited to have "found someone else". Although she has had her transplant and is 10 months out and thinks she is in rejection with BO. So this doesn't make me very happy. Especially for her...my heart goes out to her and I hope that things turn around for her and the doctors are wrong. One thing about after transplant is you can get BO as "rejection". That's usually how most people get BO...it's rejection from their lung transplant. There are some of us that have BO as our lung disease...and so there's the possibility of BO as rejection after transplant. This is what has possibly happened with Annette. (the"someone else" lol) In chatting back and forth with her, our stories are very similar. There's also Angela in the "BO BFF club" that I believe I may have started. haha. Angela is Brandi, Annette's and my shining star of hope. She is post transplant a few years and doing great! She's been there and done that and it's nice to be able to ask her questions on things I could possibly expect to happen or not to happen. These girls "get it" when no one else can quite possibly understand. We want so bad to live and we all have faith in God that He will take care of us and all will be as it should.

I was a little disappointed today though. I thought I was going to get an "official" call of being listed by today but I didn't. I can't say that I am depressed about it right at this moment because I don't feel that way at all. I know that I will be listed very soon here because they said I would be. I have no doubt about that. Just disappointed that there was no call. I told Doug I may try and call tomorrow just to check on things. But I don't know if I will. Maybe I will just wait it out. My coordinator said she would call, so I have no doubt that will happen. I did get my next set of appointments for Cleveland...I will go back July 2.

On a side note, Austin turns 15 tomorrow!!! I can't believe my oldest is going to be that old! I am so very proud of the young man that he has become. He does drive me up the wall quite a bit...what teenager doesn't, right?? But I couldn't ask for a better kid. He is loving and kind (when he wants to be) and a good brother to his sister and brother (again, when he wants to be, lol!) I have really missed out on his sports over the last 2 years because of my disease and I am just ready to be well again so I can go cheer him on with the rest of the parents. I hate not being there to support him. He is an awesome baseball player and found a new passion with wrestling in which he is excellent at! It's hard to believe he is going to be a sophomore next year and will be driving soon. Time sure flies. I am so very proud of him and love him to the moon and back.

Grandpa and Grandma Neff with

Austin, Alexa and Cameron May 2012

Just learning some more patience I guess until I hear I am "officially" listed. I do have a better inner peace about how things are and how things will be. I am still anxious about it all but am trying to get in a better state of mind and just trusting in God that everything will be ok and soon. I pray for my "BO BFF's" and that we will all be able to take a road trip and meet up when we all have our new wings and don't have to wear our oxygen or our masks!