one day at a time . . .

Archive for the ‘Updates’ Category

Not doing so well…

I know it’s been a while again…I’ve been having a rough time lately. So I had 4 pneumonias in the 1st 2 years posr transplant. I has a great 2015 until Christmas Eve. I started with a fever and landed in the hospital on Christmas day with pneumonia. I completed 2 weeks of IV and was fine. I had started yoga the previous November and just loved it! I continued with that. 

This past July 6th I had a fever again. Ended up having pneumonia. I completed 2 weeks of home IV… felt great… went back to yoga… all seemed well. About 10 days later I was in Yoga and could not keep up with my breathing and had to leave the class after 15 minutes. I couldn’t believe how I was feeling. Was diagnosed with pneumonia again, as well as an 8% drop in PFTs. Not sure if the previous pneumonia hadn’t completely resolved. I was scheduled for a Bronchoscopy 3 days later and was only put on oral antibiotics. I suspected the bronch would show another bronchial narrowing, but instead I was very congested and they cleaned me out the best they could. 

That night I ended up in the ER with a temp of 102. They put me on a different antibiotic than last time, but until cultures came back from the bronch we wouldn’t know if the med choice was correct. I continued running a fever for several days. Culture results seemed to take forever! Bronch was on a Thursday and results came back the following Monday. Of course the med chpice was incorrect and they switched me to Zosyn. After a few days the fever went away. I was still having pain on my lower right side. They did another bronch and found a huge mucous plug in my lower right airway! They pulled it out and the pain improved. We’re still unsure if I have airway narrowing so they scheduled another bronch for September 8th, when hopefully the pneumonia will be gone and they’ll be able to see clearly.

I was discharged from the hospital to complete 2 weeks of zosyn at home. When I went in for my follow up on 8/23 the xray still showed pneumonia and I had an additional 4% drop in PFTs for a 12% total! My 10 yr old niece came to my visit and took this video:

I had to continue zosyn for another 2 weeks. I’ll be done by this Wednesday morning and my bronch is this Thursday. 

I am praying and hoping that I have a narrowing because if not, the other possibility is rejection. 

Please let this NOT be rejection…

TYB 💖💖 Donate Life


It’s official…

As of 3pm today, 3-6-12, I have been listed for double lung transplant.

Started ivs yesterday. Just short of 2 weeks after finishing my last ivs.

Thus is how it will be until the surgery.

It’s wierd waiting for some innocent person that was generous enough to sign up as a donor, to pass on.

I told my son, who’s a runner, that after I get my new lungs I want him to teach and train me how to run. I really want to be able to run! That will be my first goal! Running… Seems so simple, but I haven’t been able to in many years…


Here we go again…

Exactly one week ago I finished IVs and just like the past few times, I’m sick again. Woke up with a fever 101.6. One week free.

Started oral antibiotics.

Is this a sign that I just won’t improve?

Am I fooling myself thinking I’m too healthy for transplant.

I wish I knew what to do…

CF sucks even more…

This happened last night. Here’s the sequence of events:

> – hooked up tobra, still a bit cold

> – nebulized albuterol

> – started vest along with hyp saline

> – started feeling cold

> – nebulized dornase, still w vest

> – finished vest, very cold

> – nebulized colistin

> – thought maybe getting a fever, but it was 98.6

> – covered up w blankets

> – finished tobra, hooked up merrem

> – out of nowhere, while lying down I got real short of breath

> – couldn’t catch my breath

> – o2 was 77 w 3L !!!

> – called hubby, I felt like I was going to black out, lips white

> – had hubby put o2 on highest level

> – had strong urge to go to bathroom

> – hubby gave me 2 reeces peanut butter cups

> – my o2 finally went up to 98 on 6L

> – then I had a temp 100.5

> – took 2 motrin and still kept o2 on highest

> – my o2 is 98 and hr 112 and I think the fever is coming down 

> not as cold.

This was VERY scary. Gasping for breath is not fun.

Woke up evry hour during the night to cough. Woke up w 101.5 in the morning.

Doc said fever will drop O2.

Were upping my merrem and tobra dosage and upping Prednisone. She will also consult with infectious disease tomorrow.

This sucks!

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?

Scary next step…

Went to the doctor today. It’s day 13 of my 5th cycle of IVs for the year and my pfts suck… 34%…

So we’re going to try an IV medication I have never taken before, polymyxin. I need to start it in the hospital because there are many side effects and my kidney functions will need to be monitored. So I should be admitted in the next day or two. We will also schedule the insertion of my first port while I’m there.

This is scary because it just feels like everything is riding on this. If it works – AWESOME! If not, it means my CF has progressed and i’ll be that much closer to transplant.

I’m trying to stay positive. I worry so much about my son and how this will effect him. I worry for my parents – its very hard to feel helpless when your child is ill. I worry about my husband – he’s had enough heart ache – his mom died when he was only 11 – his dad died back in 93 after an infection from surgery.

Please God, I know you have a plan for me. I just hope its a good one 😉

CF really sucks.
It has taken over my life.
I want my life back!
Please let the polymyxin do the trick.

Scared Sick

I started IVs again this past Monday. I thought the last time I was sick 2 months ago was bad. Well… this is worse. Much more mucous. Pneumonia in my lower right lobe. Oxygen is also low. I’ve been wearing o2 on and off. I’m a little scared as to what’s going on. Worried I may be hospitalized. Worried things are getting out of control…

To all you CFers out there. Please tell me you’ve been here and have made it back to your baseline… I need some support..