Hello, finally feel alive again

JustDucky

New member
Hello my friends...been awhile since I have been here. Been very ill since Thanksgiving and in hospital for about 3 weeks for severe flare up of my B. cepacia (other bugs had a party as well, but that one the docs worried most about). Needless to say, I have been thoroughly nuked by just about every combination of antibiotics. Some of them made me feel very toxic, my eyes hurt, my skin hurt so did my teeth not to mention my GI tract which felt like flames throughout. It was chaos to say the least. I was in isolation the whole time. My doc felt bad, he kept asking whether I would be offended if I was put in isolation. I of course said no, I know why I needed to be put in isolation...for other cystic's health as well as mine as I pick up everything as well. He even put me on a different floor than the regular cystic population, in the MICU because of my vent too. That made me feel good about him, that he was concienscious about other's wellfare.
I know some of you got packages, please let me know if you got them or not, my mom mailed some of them...I pray they got to you. If not, I will look into it and see what happened. Poor mom mailed so many things between Thanksgiving and Christmas, some things may have gotten confused. I spent my holidays in the hospital, it wasn't so bad though. The nurses were great and my family visited when they could. I was an hour and a half away, not too far but far enough to make it really tiring to visit sometimes. I made it home just before New Year's. My colony counts are down and I feel really good actually. My insulin dosages were tweaked while I was in hospital along with my enzymes. PT at home was restarted...it's amazing how deconditioned we can become with long hospital stays. I pray that this year is better than the last, but I know one thing for certain, I will not give up the fight even if it does turn out to be a struggle. To all of you, Happy New Year may all of your wishes come true. Also, to those who are having health issues, I pray that you recover. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jane

Digital opinion leader
Oh Jenn you've been through so much! I'm glad you are starting 2007 in a better, healthier way. Stay well.
 

Debi

New member
Welcome home, and I'm so sorry for the ordeal you've been through. I will hold good thoughts that 2007 will find you continuing to heal and get stronger. I'm glad you have a conscientious doctor. Hooray that everything ended up working out! I'll keep you in my thoughts!
 

Allie

New member
Yay Cepacia.< /sarcasm>

I'm sorry you've been through so much, but so glad you're back with us! Here's to a better year!
 

HairGirl

New member
Oh Jenn, you sound like my twin! I just got off 7 weeks of IV's! My B.Cepacia is really showing us whose boss right now! We changed up some of my meds this last time and I think it helped. I would be interested to know what you were on.

Welcome home and yes, after a three week stay it will take awhile to get back what you had before, take it easy!
 

JustDucky

New member
Hi all, thanks for all of the well wishes. Hmmm let's see, I was first put on pills...they haven't worked in the last year, but the doc wanted to try them again. Trust me, I am going straight to the IV's next time, I would rather feel crappy for a few weeks than feel like sh*t for a few months! I believe it was Vantin, TOBI and...doxycycline. That failed, another round began...TOBI, doxy and rifampin. That nearly killed me and then I was put into the hospital for intensive IV's, my cultures showed 4+ B cepacia, 2+Staph, 2+steno and 2+yeast (no surprise after all of the antibiotics I took previously)...so the docs put me on Tobra, cefapime, minocycline and my zithromax, all IV except for the minocycline. It turns out my B. cepacia was sensitive to minocycline and cefapime to some extent, the others were thrown in to augment their effects. Pretty resistant to everything else. All I did is vomit and feel nauseated the whole time I was on the meds. It was like I was pregnant and suffering from non stop morning sickness!!!! Phenergen became my best friend. Funny how they want you to eat, eat, eat when you feel like vomiting any time you smell anything, even if it is normally yummy. I got smart though, I ordered stuff that had hardly any taste or smell so that I could get some calories in me. I tolerated Boost Plus to some extent, it was really sweet though but I knew that I had to choke something down or the docs would have a cow.
HairGirl, what lovely cocktails did the docs give you for your cepacia? I hope you are doing okay now...it really knocks the crap out of you huh? Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

catboogie

New member
glad to hear that you are home and feeling better. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HairGirl

New member
Yes it really does knock the crap out of you! For years I have been doing: Meropenum/Ceftazidime/Amikacin(all IV's) and Zithromax. The first change they did was to take away the Ceftaz and add Bactrum, that was cool with me because then I only had one continous iv. Then they got my culture back where they were trying out 4-5 drug combo's so they did Mero/Amikacin/Minocycline/Levaquin/Zithro and like you maybe it was the Minocycline that made a difference. The thing that became hard on my body was I had been on the Mero/Amikacin since the beginning so in order to do three weeks of the new meds I had to be on those for 7 weeks! my body really started to react to that since they are such strong drugs. So right now I am taking a break and hopefully will last a couple weeks before I have to start again.

Isn't it crazy how cepacia works? I've really not had major problems like this before but since August when I was intubated for a week it really had time to settle in there and make a home and I haven't been able to get it out yet! I wish you the best, cough that crap out!!!! let's try and keep the cepacia at bay as much as we can.
 

Landy

New member
Jenn,
It's good to see you around here again<img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope this year is much better for you & like you said, don't give up the fight! You are one strong woman, no doubt!
 

Lilith

New member
Glad to see you back, Jenn! I've been having a pretty hard time with my bugs, too...since October, actually. May this year be better for both of us, eh?
 

kayleesgrandma

New member
Jenn, it is so good to see you back. This why we need to know about people when they are in hospital, and how they are coming along! Please keep up the fight as long as you can--what spirit you have. You were so sick, but you weren't going to let CF take you down! Helluva fighter you are! Hope things are better from now on. <img src="i/expressions/heart.gif" border="0">
 

kayleesgrandma

New member
Jenn, it is so good to see you back. This why we need to know about people when they are in hospital, and how they are coming along! Please keep up the fight as long as you can--what spirit you have. You were so sick, but you weren't going to let CF take you down! Helluva fighter you are! Hope things are better from now on. <img src="i/expressions/heart.gif" border="0">
 

JazzysMom

New member
I am soooooooooo sorry to hear you had a rought time, but soooooooooooo glad you are back with us. Here is to 2007 being a healthier one!
 

Jem

New member
On Jenn...what a rough way to end 2006 but 2007 is off to a great start! You are a major inspiration and your strenght and courage and compassion shines through all your posts. <img src="i/expressions/sun.gif" border="0"> I pray that this year will be a great one for you.<img src="i/expressions/heart.gif" border="0">
 

CowTown

New member
I'm happy ot hear you're back home! That stinks you were in the hospital over the holidays. <<Here's to a MUCH better 2007!>>
Thanks for letting us know. <img src="i/expressions/sun.gif" border="0">
 

beleache

New member
Hi Jenn, Wow you went through alot... I pray that you will have a much healthier year.. i think we have some very strong, brave and amazing people here... God Bless ... Joni 55 y/o f w c/f
 

Marjolein

New member
It's really good to see you here again Jenn! I'm sorry to hear you've had such a hard time over the holidays.
I hope this year will be good for you

Love and positive thoughts your way!!!

Marjolein
 
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