one day at a time . . .

Losing Control…

It’s been a while since my last post. Been trying to get things back to normal after 101 days on IVs for 2010. Also attempted to wean off the prednisone since October of 2008…

Well this past Saturday was 2 weeks off the prednisone and I was going through pretty bad withdrawals. Very achy and it only got worse by end of day, feverish at times, and slight breathing decline. Then Sunday, started with a cold. Off to the dr Monday, and my breathing got real bad, and I blew a 33% PFT! 33%!! Haven’t seen that in 20 years!

So, back to the drawing board. Started oral antibiotics, and only 10mgs of prednisone. Had a long talk with my dr. Took bloodwork, key number to check is the IgE. I suspect it’s elevated again, which of course is treated with — prednisone. We plan to stay the course until Friday, and if not better, re-start IVs. Well my IgE did come back in fact elevated – but she chose not to up the prednisone until we retest it on Friday. We also discussed my sinuses. About 20 yrs ago, the ENT suggested surgery, but once I got my firm CF diagnosis it was determined it was not necessary. Then, back in 2008, when I had my 3 month migraine and saw an ENT, and had a sinus CT scan, he found chronic sinusitis and a deviated septum. He recommended surgery to clear out my sinuses as well as correct the septum. My CF dr decided against the surgery since my sinuses have not been causing me any problems. Now, she wants to repeat the sinus CT scan, have me visit the ENT again, and evaluate any progression. She’s not pushing the surgery, but wants to cover all bases now that I’ve had 2 bad years. She also suggested, as a precautionary measure, to get back with the transplant team over the next few months… “just in case”… I hate going there…

Deep down, I am so scared. On the outside, I am smiling, and believe I can fight through this like I always do. Just typing that brought tears to my eyes. No one really knows what the future holds for me besides God. I fear for how all this will effect my son. Takes me back to the day he was born and I realized that my CF may one day hurt him so deeply. I can’t do this to him. He needs me. He’s only 15, almost 16 and so anxious to get started driving. More fears for me.

Please, I need to find the strength. I have the best family support system anyone can ask for. My fight is just getting harder. Tears are still rolling down my face. Then, there’s the prospect of transplant. After befriending quite a few transplantees, that really scares me. I cannot believe the myriad of problems that exist. Every one different than the other. I just don’t want to go there. Sorry to you transplantees that are reading this, it’s just how I feel.

I realize, in order to be ready for transplant you have to be very sick, and it will be another chance at  more time. I just can’t get out of my head that once transplanted, my days are numbered by ridiculous statistics out there.

It’s so hard. It’s so scary. I’m a control freak. I feel like I’m loosing it. It doesn’t feel good.

Please God, help me to heal… help me to get back to a manageable baseline… help me to be there for my son…

I apologize to anyone reading this for the negativity… I just really need to get this off my chest and cannot burden those close to me with this. It’s therapeutic to get it out and write it down.

Off to the dr on Friday, and we’ll see where my CF Journey will take me.

Best wishes to all you CFers out there…

Advertisements

Comments on: "Losing Control…" (2)

  1. I’m sorry you’re going through a rough time. I’ve been in a similar place emotionally, especially when I start thinking about my kids. Sending lots of love your way…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: