Re: VAL HUDSON READ RE: /MRSA/VANCO = hospital &kidney damage

[Guest guest]

HI ,

I am sorry you and have been having such a hard time. I added Val

Hudson's name to the subject line so she reads your e-mail, since I don't know

enough about GSH to tell you anything.

I have to ask why wasn't someone following 's levels? I realize that

the CF clinic is far away but a local hospital can draw blood with her ped or

MD's request and check the levels. When the doc gets the results they just

consult with the CF clinic for adjustment of the dose. This is what we did when

started on Tobi. We found out quickly that a full vial of the inhaled

Tobi was way too much for and the dose was cut in half. We re checked

her " peak and trough " levels and they were fine. I am shocked that they didn't

do this for , It is just so common sense. And now she has kidney damage

because someone didn't think about it.

I hope is feeling better very soon.

Mom of , 4 & 3/4 with CF

RE: /MRSA/VANCO = hospital & kidney damage

Hope this e mail finds everyone doing well. I am wondering if that can really

happen in this world of cf. Don't take me wrong tonight. I am depressed,

angry at cf, and very tired.

I am trying not to be negative but after the past 10 day hospital stay, all I

can say is someone better do something to put a stop to cf.

picked up MRSA approx. six weeks or so ago for the first time. Thanks

to all who answered me back regarding MRSA.

Well, after four weeks of IV's my daughter was extremely ill. She was on oral

Zithromax, IV Tobra, Vanco, and Zocyn. She got to the point that she could

barely walk, or move, all of her joints were in extreme pain, she was

continually running 102 fever and finally had to pack up for the six hour

drive once

again.

By the time we got to Sacramento, she was crying from her pain and I was

really scared. was admitted to the hospital to figure out what was

going on

with her. An infectious disease specialist was brought into the picture, a

bronch was done, and tons of blood work.

The next day, we find out that the Vanco was causing kidney damage. The Vanco

level was up to 88 in her blood and wasn't to be over 10. Her creatinine was

up to 4.4 and quite frankly just about everything in her blood work was either

double high, high or low. Her cf doctor, whom I feel is one step under GOD,

took her off of Vanco and Zocyn immediately.

To make a very long story short, now has kidney damage. Every time she

gets sick from now on, we will have to drive the six hour drive and be

admitted to regulate the IV meds and her kidneys.

I have asked and asked anyone and everyone I can about GLUTHONIONE. Something

inside of me is telling me this is the answer to wonders of help with this

terrible disease but yet NO ONE will tell me I can give it to her.

Has anyone that is taking GLUTHONIONE stopped culturing psudo and or MRSA

since inhailing it????

I will not loose my daughter to cf. I have to find out how to help her. If

Vanco can cause such harm, how couldn't it be ok to take GLUTHONIONE?

I just got home, I am beat, I probably don't make since, I should probably

write more in the morning.

Love you all,

Lorenzen, distraught mother of , 16 wcf