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".
WHAT?!?!?!?
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!
I hope everything goes well. Keep us posted and let us know if you need encouragement!
ReplyDeleteOh man, I'm sorry, Amy. Getting crappy, unexpected news is the worst. I totally get you on the wanting to shelter your loved one's. I used to tell my parents NOTHING about my health, or really down play it. When I started blogging I started getting worried calls from them. They never really knew the gory details. I continue to have them read my blog for health info. I just can't stand to hear them worry or make them upset. Especialy my dad. I think he feels some guilt about "giving" me this disease and he is so nervous about my health. Good luck with those calls. I'll be thinking about you...
ReplyDeleteHi, you don't know me, I have CF too and follow your blog but don't think I've ever commented before..
ReplyDeleteHearing the word 'transplant' is a scary and shocking thing, you can never truely prepare yourself for the reality that you are really sick! It's good they are mentioning it to you now, my team didn't mention tx until my lung function was 23-25% and I need to gain a stone before I can be listed, if it had been earlier I'd probably be listed by now!
Hope the appointment goes well, all my love. Kerry x
Wow...I know that was a shocker for you. I was like you initially.....I usually always bounced back from being sick, so wasn't really interested in the transplant. Didn't even want to think about it. But then I became resistent to most antibiotics and nothing was helping me, and i kept going downhill, so I did get evaluated then listed. I think it's good that at least you can meet the team, etc. without them making you jump right into the evaluation process. I'll be praying all goes well.
ReplyDeleteThat's interesting about the predinisone and your doc not wanting you to be on a maintenance dose. I do understand the complications, and I don't have the best bones because of it. But before my transplant, our CF docs put most of us on prednisone all the time. I think i was on prednisone daily for about 1-2 years before my transplant. Occasionally I would do a Prednisone burst, but was on a maintenance dose of about 25 mg I think. The maintence dosages they use after transplant average 5-10 mgs daily (I'm on 5 mg)...so it's not a huge dose. Anywhoo...just thought that was interesting opinion.
Praying you feel better and that the Cipro works!
thank everyone I appreciate the comments :) <3
ReplyDeleteI'm not looking forward to that day, if it comes, either. I'm not on O2, but I haven't been above 40% in at least 5 years. Makes me wonder when they will take similar action....
ReplyDeleteStay strong, cyster!
Hi! I just read this blog, and I can't tell you how much of a familiar feeling I had. In Oct. 2010, I was going in for a regular visit with my Dr. I had been working out really hard for a couple months prior and was feeling good. That visit changed my life, as the T word came up. It had been mentioned before in passing, but we had never dove into a discussion like this head first. I felt like I jumped off a diving board expecting a large pool of water, and found only cement. (weird analogy??) Anyways, it scared me, my husband and my parents...but in the end after the initial shock phase, it changed me for the better. I try to take better care of myself, workout a lot, rest...and overall it has changed my mentality for the better.
ReplyDeleteJust trying to shed some light on a not so light situation. So hang in there and keep smiling, things will work out. :)
Hey Cyster, Sending you some strength {{{hugs}}}. I'm not near your numbers yet so can't really say I can imagine what you're feeling, because I can't.... but if you need someone else to help with support, (from Maryland!!) you can count on me! Take care, ~Juliet
ReplyDeleteHope all goes well.
ReplyDeleteI told my dad and brother and it wasn't nearly as bad as I expected :) My dad asked a few questions and got to learn a bit. My brother said better now then when its too late. So my anxiety was all for nothing :)
ReplyDeleteThanks for all the support everyone!!!!!
And don't forget about your HUGE support system on here! xoxo
ReplyDelete