one day at a time . . .

Posts tagged ‘Feelings’

Regaining Control…

So my attitude is better now than it was a few weeks ago. After hitting a low on my PFTs at 33%, it went up to 37% a week later, then 40% a week after that. However, I didn’t feel my oral antiobiotics were doing what it needed to, and once my dr saw the color and thickness of my mucus, she ordered IVs.

Ok, so 101 days of IV in 2010, and here we are in March of ’11 and I’m back on IV. I started them a week ago, and I’m already feeling improvement! I got on my elliptical for the first time in a LONG time yesterday and got through 15 minutes – that’s great!

The other thing I did was get my very first PICC line. Yes, 43 yrs old, and this is my first time. I love my PICC – what was I thinking doing peripherals, and having them changed every 5 days! The only annoyance is the wrapping for the shower. I found this product and think it’s awesome. To the CFers reading this that use PICCs, you might be interested: I ordered it through since there was a 20% coupon 🙂

This is my PICC:

Also went to the ENT at Columbia Presbyterian for an opinion on my sinuses, then went to a top notch guy at the NY Eye and Ear this past Monday. They both recommended the surgery. That was no surprise to me… I’ve been told that several times, but my CF dr never recommended it because my sinuses hadn’t seemed to be contributing to my infections. But after the past 2 yrs of craziness, it was worth a look in to.

Went for my 2nd opinion to a dr at the NY Eye and Ear, and he is able to perform the surgery under conscious sedation! And has experience with CF patients. So no worries about any difficulty that may arise from weaning off the breathing tube from general anesthesia. He will be correcting my deviated septum, amd “cleaning out my plumbing”. When reviewing my cat scan, it shows a lot of disease/inflammation. I even have bone that wore away! So my anatomy is not classic. He will perform the surgery with guided radiology. There’s also a section where my brain comes down further than expected – so the guided help is needed in order to map everything correctly. I expressed concerns about so many CFers having multiple sinus surgeries. He explained how many surgeons correct portions of the sinuses, leaving it vulnerable for future problems. He will be improving the drainage of all 8 sinus cavities and hopefully this will improve my drainage and hopefully decrease infections related to  my sinuses.

I realize there is NO guarantee. But, at this point, I am willing to try anything that can possibly decrease my IV occurrences, even if only by a small percentage. The way I see it, I’ll be awake, it’ll be about one hour to do, and it’s not a drastic step. Scheduled my procedure for the 23rd. I’m very anxious! I will still be on IVs and that’s how my CF dr wanted it.

So, after feeling like I was losing control,

I now feel like I’m picking things back up.

The roller coaster joys of CF 🙂


Having an emotional day…

I’m not one to break down.

I’m a control freak.

Always have a plan… never weak…

For whatever reason, today is weird.

I’m so emotional, just crying. The prednisone is not working and it always does. I am so scared for what is happening. Awaiting some blood results and a call from my dr. I know I have beat the odds at the age of 43, but am NOT ready for things to turn…

So many people need me, my son most of all. He’s 15 and at a vulnerable age. He needs my guidance, but lately I feel like I don’t have the strength to do what I need to. My husband needs me… He cannot do this without me. He’s lost too many loved ones, both parents at the top of the list. It just wouldn’t be fair to him if I k now go south.

Hoping that some meds will turn this around, it’s just that when you’re feeling the way I am right now, it’s just so scary and there’s nothing I can do! I can’t control it. IT’S CONTROLLING ME!

So many say, “I have CF, CF doesn’t have me”… Well, CF has me right now and I DON’T LIKE IT.

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…

Reflections of 2010

So much happened in 2010. Reflecting back I can remember the negatives. I will attempt to remember positives as well. So here goes…


NEGATIVE: So many IV treatments… 4 x !! And where I always used to do 2 weeks, I have graduated to 4 weeks! It also seems I may have lost lung function. I haven’t seen 47% since October of 2008. My highest this year was 45% in April. This past week I hit 42%. I am happy to be back in the 40s – but I can really feel the difference. I’m pretty much short of breath doing anything, which is annoying. This is scary as well. I will try hard to get more function back.

POSITIVE: Although I may have lost lung function, I should be very thankful that I maintained my baseline for over 20 years! From what I understand, that is not the norm for CFers. So I really do appreciate that!


NEGATIVE: The tragic accident that my 4 aunts, all sisters, were involved in. One aunt, my godmother, passed away. Two of my aunts are still recovering. The accident happened August 19th! The driver is physically well, however suffers from the guilt of being the driver.

POSITIVE: The survival of my 3 aunts. They surpassed every doctors expectations. Although I feel so sad that they still suffer daily and will never be the same, I am so thankful that they are here. This may be selfish on my part. I just hope that 2011 brings them some more pain free days and happy days.


NEGATIVE: My godson fell at school resulting in bleeding in the brain.

POSITIVE: My godson is fully recovered!


NEGATIVE: My dear friend had a grand mal seizure while shopping at Kohls. Out of nowhere! She ended up in the hospital, they discovered a golf ball sized tumor and she had brain surgery 4 days later!

POSITIVE: Her tumor was benign and she is recovering!


NEGATIVE: My cousin’s 6 week old son was diagnosed with a fused skull, requiring brain surgery to avoid his brain not having room to grow.

POSITIVE: I am hoping that the surgery of this precious baby is a success in 2011!


POSITIVE: Here’s a positive without a corresponding negative 🙂   My CF Fundraising team raised $37,000! Awesome!


POSITIVE: I started this blog and as a result connected with so many other CFers. It’s so comforting being able to connect with others that are going through the same thing and understand!


NEGATIVE: Still not being able to get off of prednisone. I’ve been on it since October 2008! Ugh! Weight gain and puffy face is the worst side effect for me…

POSITIVE: This is tough – I guess it does help me to breathe – so I am appreciative of that!


That was 2010.

Onward to 2011!

I truly hope this will be a better year…

My Latest IV Experience

This coming Monday will make 3 weeks on my IVs. Not sure when I will be done.  This was a scary IV experience. I haven’t been this sick since 1999. My oxygen went below 90, my breathing was horrible, my mucus production more than ever. I ended up on triple IV antibiotics, and IV prednisone before I started to feel any relief.  High blood sugars were also added to the mix. My dr wanted me in the hospital, but I insisted on staying home.

Scary. While going through this all I could think of was, is this ever going to turn around; will my doctor start the transplant discussion again; will my breathing ever get better; will I have to stay on o2 long term…..

Now things finally turned around 🙂   …. no transplant discussion…  breathing improving … no more o2 needed … what a relief. And my sugars returned back to normal!

My concern now is will my fev1% ever return to baseline. It hasn’t over the past year. I’ve been on prednisone since October 2008, unable to wean off. Through this my fev1% has declined.

Please Please Please let me get back to at least 45%… My last fev1% prior to being sick was only 37% 😦

2011 BETTER be a better year. I’m sick of IVs – four times this year alone – ugh!


I just read a post from the mother of a 7 year old with CF:
A Mother’s Feelings

I am amazed at how strong she is
I am mad at the fact that she has to go through this
I hate that Conner has to suffer like this
I sit here with tears in my eyes – how can I ever complain about my suffering? I’m 42, he’s only 7 and has been through more that many ever go through…

I don’t understand why people don’t get it
CF research and development can come so far if people would only make a donation
I’ve spent countless hours since January, reaching out, reaching out
Many have been generous
Many gave whatever they can
But so many more simply chose to ignore the call for help

I don’t understand it
I’m not asking for $100, i’ll accept ANY amount – $1, $5 – anything
It’s not too much to ask for.. right?
Also, I’m reaching out for a cause that personally effects ME
Shouldn’t that make it easier for them to support me?

If only everybody would give a little, maybe we can put and end to any more CONNER stories.

    My prayers are with you Conner

But you look so good…

You know how you can tell someone is sick simply by looking at them??

You know how disabilities are usually visible??

Well – CF is not, unless you are in critical condition, in a hospital, on oxygen, with not much hope.

I went out yesterday – put makeup on – pushed myself out – even though I am on IVs and having breathing troubles. Although I do not like to burden anyone with how I feel, I have to say, it bothers me when someone says to me – but you look so good. Hello – I have an IV line in my arm, my breathing is labored. My disability is inside my lungs and it simply does not show on the outside. Why can’t people get that?

I suffer every day – some days more that the other.