one day at a time . . .

Posts tagged ‘transplant’

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…

Transplant Info…


I’ve been following Cystic Gal’s amazing post double lung transplant progress ( She is doing so well! Her most recent blog answered some questions from followers. I found them very helpful so I wanted to post them here so that I would always have them for reference:

CysticGal Questions – Answered (mostly)

Q:  Where should I send CysticGal get well gifts?
A:  Send them to her home, and CysticDad will bring them to the hospital.

Q:  What should I send?
A:  Anything except flowers.

Q:  How long will CysticGal be in the hospital?
A:  Maybe about two weeks.  Let’s look for her to get home on her birthday.

Q:  Why would CysticGal need a bronchoscopy after a lung transplant?
A:  Bronchoscopy is a useful tool post transplant.  It provides a way to look visually at the anastomosis (where the lungs are put together), the general look of the airways, a way to biopsy to check for rejection, and a lavage to check for bacterial infection, viruses, or fungus.

Q:  Do you know anything about the donor?
A:  It is actually quite a personal question to ask a transplant patient about their donor.  CG says that she knows nothing of the donor except that the size match was perfect.

Q:  How different does breathing feel?
A:  CG says her new breathing is “huge and weird like a big empty cave.”  She is still wheezy and having trouble coughing.

Q:  Do you still need to continue the daily CF therapies?
A:  For a few months tops, you will still have to inhale Tobramycin and perhaps another inhaled antibiotic.  You will no longer need Pulmozyme, or to do any kind of Chest PT.

Q:  Since you still have CF, how does that effect the new lungs?
A:  The new lungs will not have CF, and will not develop it over time.

Q:  What are the new meds like?
A:  CG says that the new meds are overwhelming but that they are still being managed for her.  Tomorrow she will start recording them on her own.  She thinks there are “so so many.”

Q:  How’s the scar?
A:  CG has not yet looked at the scar in the mirror.  She says it is very close under her breasts so she hasn’t seen it yet really.  She believes that she has received an accident boob lift.  For serious.

Eva – Celebration of Love

If you have followed Eva’s story, a Celebration of Love has been scheduled.


If you haven’t heard of her – check out her blog: Eva’s Blog. It chronicles her amazing journey pre and post transplant. A movie was made that was aired in Canada as well, and we are awaiting the movie in the US.

Take some time to view her blog and subsequently viewing the Celebration of Love that her family has planned for her. If you can’t make it, I believe it will be posted after the fact.

Love Love Love Eva!
You were a TRUE inspiration


I recently discovered 65 Red Roses’ live journal – A journal of Eva with CF. Unfortunately, I discovered it after she passed on… I’ve become addicted to the site and reading about her experiences and feelings. Today, this one touched me deeply


how courageous to put this one out there:


On my sickest of days, I’ve been here too:

She was strong, funny, and inspirational. A legacy has been left behind. This particular post is very scary as I know one day my lungs will get to the point where I need a transplant. Then what? The prognosis after transplant is not great – you’re just given some more time with your loved ones. The constant fear – when will they reject me? will I be able to get another set? how will my son be affected.

Oh, it’s all about my son. I so do not want to cause him pain. I need to be here for him, through school, college, marriage, and yes, I want to be a grandmamma one day. He tells me he and his wife will both work and I’ll watch the baby. Oh – to know he thinks that and for me to realize it may not be possible – hurts so much.

Please… CF… stay baseline… don’t progress…