one day at a time . . .

CF Sucks …

Well, the Polymyxin was a nightmare.

> started on 12/8

> by 12/10 I was unable to walk! My knees would give out. My hands, feet and face were all numb. I was dizzy. Just feeling miserable. My calcium, magnesium and pottassium were all low, so I was given iv calcium and mag, and oral pottassium.

> by 12/11 I was able to walk with a walker, but all other side effects remained. Oh and itching also started.

> by 12/12 I started feeling better with breathing and the cough was practically non existent.

> the meds pretty much made me feel weak and miserable. By 12/13 it started to subside, but by evening got bad again. During the night I got so itchy that I scarred my arms and stomach from scratching. I was given benadryl to help, but it really did nothing. Plus, my doc told me not to take too much as it can dry up the junk in my lungs and cause plugging.

> 12/15, my pfts were 36% and my doc said I could complete the meds at home

> by 12/17 I could no longer tolerate the Polymyxin and we stopped it after 9 doses. I was just so miserable, numb, and tired.

Well, a few days later I started with a sore throat, my breathing began worsening, and my oxygen was dropping into the 80s, so I also started wearing o2 24/7. By 12/23 I started oral antibiotics. And on Christmas Eve, restarted iv meds. Back on tobra and merrem, but a slightly lower dose because of the effects of the Polymyxin on my kidneys. Oh, and i’d been running an intermittent fever as well! Also from the poly!

(i had paused here and saved it as a draft…)

Here I am, one hour after the times square ball dropped. I stayed him with my hubby and son. Just not feeling well. Although I’m no longer short of breath at rest, I’m still very short of breath with any walking. Still on 24/7 oxygen.

At this point, I’m a bit depressed. Scared for what 2012 will bring. I have a transplant appointment on 1/6. I’ve had most of the eval tests done while I was admitted. My gut tells me the time is coming, but my heart says NO, NOT YET! I have been lucky to have made many transplant friends on FB, and in 2011, 6 were transplanted and doing great! So, this has eased some of my fears. I just want to do whatever will keep me alive longest. My son, husband, parents, and family needs me. Most of all my son, 16 and thinking of college.

2011 just sucked! 6 rounds of IV, still infusing.. at least I got my port to simplify things…

2012… What’s in store?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: