one day at a time . . .

Posts tagged ‘prednisone’

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…

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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!

Prednisone Tips

I wish I had known what I know know when I first tried prednisone over 10 years ago. After many high dose to low dose tapers, these are the things you need to be aware of:

1. Salt will cause you to retain even more water. Prednisone bloats you, salt amplifies it! So, cut down your salt intake.

2. Have your doctor prescribe you water pills to help with the water retention.

3. Keep exercising, it will help you to keep your weight down.

4. As hard as it is, I KNOW, try not to give in to the constant cravings. If you must eat – make it a healthy snack – carrots, fruit, veggies, salad.

5. I’ll say it again – watch your SALT!!!! I know as CFers, we need increased salt, but when I’m on prednisone, I DO cut down.

I hope this helps you!

Feelin’ Fine

Haven’t posted in a while.

With me,

that’s GOOD NEWS!

It means I’m up and about and

feelin’ fine… YAY !

My prednisone is nice and low and

I’m finally losing weight!

Also busy busy busy preparing for my

Team’s CF Walk on the 16th!

We’re up to 29K – need to get to my goal of 35K!

WE CAN DO IT ! ! !

IVs… PFT Rollercoaster…

Hello!

I went to the dr today, my 37th day of IVs. I was sure I would have great PFTs – like 47% or 48%. The past 2 days I finally felt better – not winded anymore and not junky.

So, I blew a 44% – but the blowing sound was awesome – no junky or wheezie sounds – just clear air! So why only a 44% – I don’t know – but what matters to me right now is that I FEEL better. The PFT roller coaster can be very frustrating, especially when it doesn’t go in the direction I’d like it to.

Dr said my right upper lobe was FINALLY clear.

The decision is to infuse my last 2 bottles of IVs, which I am doing right now – then I can pull the peripheral out!

WHOOOOPIEEEEEEEEEEE ! ! !

I am down to 7.5 mgs or prednisone and will keep it there for about a week then touch base with my dr again and hopefully drop to 5mgs.

I had  my last xolair injection today. Not sure if I’ve mentioned this before. She tried it as a long shot – but after 6 doses, it didn’t really seem to do anything.

So for now – I will enjoy my IV freedom and hope for 3-6 more months of this freedom!

IVs………

Looks like switching one of the IV meds made a difference. I’m not winded. But, I’m still junky. My PT told me my upper right sounds much better so that’s great news.

Anyway, since I’m still junky and I won’t see the dr until Thursday, instead of ending the IVs at the 5 week mark tomorrow, they are being extended until Thursday. Hopefully by then all will be well and she clear me from these IVs

I cannot believe how long I’ve been on them! This is a first! I hope I’ll be free for a good 3 months after this – 6 months would be awesome! A little part of me wonders if getting off the IVs might just result in everything starting again… Hoping it’s just paranoia.

I AM still on the prednisone. Only 7.5mgs. Not sure what we’re gonna do with that yet.

One step at a time ♥

Prednisone Reduction

OK… SO tomorrow I am to drop from 15mgs a day to 7.5 mgs a day.  I so want to be able to wean off this crazy pill, but at the same time am nervous, as for the past 18 months, every time I tried, my shortness of breath came back. And, this is a bit of a dramatic drop.

Hoping the IVs that I’m on will help combat the symptoms and aid in the weaning off of prednisone.

Wish me luck!