Wednesday, February 16, 2011

The Good, Bad and the Ugly

The good...
I am not in the hospital! My PICC line was taken out at my Monday appointment! It did however want to stay with me awhile longer and took heat pack time and finally a PICC team nurse to get it out. I had a lovely bath last night and thoroughly enjoyed immersing my whole arm in the water. It had been 6 weeks since I could get my arm wet, so lovely, lovely...The other good thing is my littles were here awhile yesterday and I had great fun reading books to them and we all laid on the floor playing with the train set. I was hugged, kissed and loved on...

The bad...
My PFT's at my Mon. appointment showed that my lung function has not improved one little smidgen, after all this time. It is down from where it was when this all started on Jan. 2. I still have very little energy and still short of breath, although that is better than it was. My lungs were still wheezy all over. My creatinine level has been elevated, which is one reason for no hospital and continued IV's...they don't want to see me have kidney problems, which can be caused by the one IV I was on. They did another blood draw to check. I also had a hearing test done at my ENT last week and the tobramycin has done some damage to my hearing. It's just frustrating, because I'm having problems with side effects and it didn't really help my lungs a whole lot! I'm now on a higher dose of prednisone...60mg. They are hoping that this will help the lungs. I really really hate being on higher doses of this! They are also going to send me to Cleveland Clinic to an immunologist to really work on the low t cell thing I have. Yesterday, my NP called and said my creatinine level was elevated even more and they scheduled a kidney ultrasound for today, so I did that. They are going to send me to a nephrologist (kidney specialist) too, they are working on scheduling that. I am used to doing IV's and bouncing back and being good to go for awhile...this time, it's not working like that! I think between the more mild CF and whatever the t cell thing is, my doctors are puzzled. I AM a puzzle. Or shall we say special...For sure unique. Anyways, that's pretty much it with the bad.

The ugly...
I just threw that in, sounded like it went together. Is that the name of a movie? Although I could for sure say it has been my hair and make up... I haven't really cared much about either! Oh well...

8 comments:

The Starr Family said...

We will pray, pray, pray for you! Adam and I just returned from Sarasota today, and I was talking about how special you are to Nonnie! She thinks so much of you and continually prays for you & your family!

He certainly brings healing, and not just to our health! Keep your spirits high!

Stacey said...

Yay for the good...but boo for the bad! It really stinks when the treatments don't meet our expectations. By the way, I have low t-cell counts too. I always have... What do your doctors think about causes them to be low?

Katey said...

Glad you got your PICC out...i know that feeling. But I'm sorry about you not feeling much better and your PFTs not improving. Hang in there. Hopefully your kidneys will be ok!

I supposedly have mild hearing lost in one of my ears due to so much Tobramycin IV abx before my transplant. Although, I can't really tell...but do know it's there. Can you actually tell you have hearing loss?

Praying you feel much better SOON!

Blessedmom's Simple Home said...

Special for sure :-) I'll continue praying too.
Blessings,
Marcia

Susan Mathis said...

I just stumbled on to your blog tonight... Wanted to leave this with you Isaiah 41:10 and let you know I am praying too.

65 Roses for Marcia said...

Stacey, I would love to ask you some t-cell questions, but don't have an email. Would you mind emailing me?? marcia3345@gmail.com

Keetha Broyles said...

I am thankful for the "good."

I'm very concerned about the "bad."

And there is not ONE thing about you that is ugly because you have a beautiful heart and THAT is true beauty!!!

Somer Love said...

Oh nuts!! I hate wheezy lungs ugh!! I hope you start being on the mend ASAP.

I hope your kidneys figure things out asap too! Thinking about you and sending you good vibes!
Xo