I think I may have jiinxed myself on my last blog post. Nothing happening HA!
Yesterday something happened....something I wasn't expecting.
Clinic started out great. Weight was up slightly, my O2 was actually at 95% on room air for once, no temp. Then came PFTs. I started at 1.08L (36%) and ended at 1.16L (39%). I'm quite the jumper even on a daily basis as you can see. My baseline is around 1.31L give or take a few .01's. I was happy with it considering I have been junkier lately and last week I was streaking almost every day, all day.
My doctor came in a bit later and I told her about the junkiness, the streaks etc. I've been very tired lately, like all day, not just when I get up. Needing naps even if I can't take them. Using O2 at night again. She gave me an rx for oral Cipro for 2 weeks. We both hope it helps and that I can avoid IVs.
Then came something I wasn't expecting....
"I'm gonna give you the number for the transplant clinic over at *&%#(*%!@. I don't think they will want to start the evaluation process right away but I do want you to get in and get to know the team".
She then rolled over to me (wheely chairs lol) and explained to me why.
I can't use any inhaled antibiotics. I responded very well to Inhaled Cipro in the study but that was before my resistance to TOBI started. So the chances of me being able to tolerate inhaled Cipro are very slim (supposed to be out soon I have heard). Oral antibiotics usually don't work, but its fun to try. I do use O2 on a daily basis, be it sleep or exercise. When I get sick, I get SICK...numbers get low, but I do bounce back. However, only Prdnisone and IVs keep me above 40%. Neither of which I can stay on constantly. I asked about maintenance Prednisone and she said they frown on it because it deteriorates your bone density and you need to be on it constantly after transplant so they limit the use of it pre to what is needed.
So while I am not in dire need of being listed, I am a good candidate to at least start the process and get to know who will be cutting my chest open at some point.
I called my mom and boyfriend to tell them. I am hoping both will come to the appointment with me as I know I don't want to be alone when I go.
The phone call I am dreading is to tell my dad and my brother. I like to shelter both of them from the "trueness" of CF. Not that they can't handle it but I just don't want to "hurt" them. Hard to explain yet I am sure many of you know what I mean. At some point I will have to tell them both, seeing as they are both, hopefully, part of my support team.
I'm now at the stage where I kinda just wanna hide in bed and see if it all goes away. Good thing the social worker gave me a number for a psychologist yesterday (I had asked her a few months ago if she could find me one experienced with chronic illnesses and she came in before my doctor yesterday to give me the number). Not only do I need to make an appointment with the ENT and GI docs, I now need to make one with the transplant team and the psychologist.
Comfy bed? Lots of covers? Sure sign me up!