one day at a time . . .

Archive for the ‘PFTs’ 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 πŸ’–πŸ’– Donate Life

* * T O R N * *

Since my last post…

  • I made it one week off IV, then started oral antibiotics, then started IVs again on February 3rd. I had to start this one in the ICU since we are trying a medicine that I had a reaction to a few years back. As it turned out, I tolerated the meds and was transferred out of the ICU on the 2nd say.
  • While I was in the hospital, more transplant eval tests were completed: 6 minute walk, pulmonary stress test, and hearth cathedorization.
  • Continued to require 24/7 oxygen.
  • I came home on IV 4 days ago. My activity around the house is better than it was on my last post, yet still limited. Need to up the o2 to 5 or 6L for activity and whatever exercise I can fit in. When I go out, I use a wheelchair.
  • Went to the hospital 3 days ago to complete my eval testing – the complete pulmonary functions “in the box”. My fev1% was an all time low of 29%.

My case will be presented to the transplant team this coming Friday, and my doctors expect that I will be listed.

Now what?! Should I? Am I ready in “my” mind. What’s even more tough is my husband does NOT believe I am ready. He believes he can get me better. He’s been putting me on the elliptical doing 4 sets of 2 minutes. Today I did 2 sets of 2 minutes and 2 sets of 3 minutes. My “gut” says I should list before I get TOO sick. His gut says we can get more years if we hold off. I’m sure part of it is denial. But, he’s had such heartache in his life – his mother dies when he was 11, and his father died after having a simple surgery back in ’93. He does not trust doctors. I understand where he is coming from. Part of me wants to believe I CAN get better. But part of me is very skeptical. I’ve never been this sick! I feel like I’m just stuck at home trying to get better, avoiding going out to avoid contact with people. I’ve shared with him the success stories of other transplantees, and his response is – “where are the stories from those that have died?” How do I respond to that!

I’m so TORN…


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 πŸ˜‰

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

It’s Been a Long While…. Sorry!

I know I haven’t posted in like forever… It’s been a rough several months…

In 2010 I was on IV meds for 101 days.

So far, for 2011, here’s what’s gone on:

  • 26 days: 3/11 thru 4/4 – on tobra, merrem, and midway added ceftaz (aso had my sinus surgery on 3/30)
  • 19 days: 6/22 thru 7/10 – on tobra and merrem
  • 19 days: 9/7 thru 9/25 – on tobra, merrem and levafloxicin – had to lower the merram dosage due to major headaches – took lots of percocet to combat the headache pain

So, that’s 64 days so far, and here we go again… My last day of IV was 9/25, and one week later I started with shortness of breath as well as thrush. This was my first time with thrush – I guess it was just so much antibiotics in such a short time.

My PFTs just aren’t doing what I’d like them to do. My 47%/48% baseline is a distant memory, and now it seems to be at 41%/42% – although right now it’s 36%, as I am not well.

Before I start IVs yet again, we are trying inhaled TOBI to see if that helps. I started that today. I’ve been on oral cipro/bactrim since 10/9.

I have to say I am extremely tired of being short of breath. It takes over my life. I can’t even exercise!

Here’s an updated view of my PFT history. As you can see, it’s on a slow decline.

So I’ve been a bit nervous about my CF future. Hoping to reach a good baseline for another 20 years!

Oh, and have I mentioned I haven’t been able to successfully wean off of prednisone since October 2008!

Well, that’s it in a nutshell…

Losing Control…

It’s been a while since my last post. Been trying to get things back to normal after 101 days on IVs for 2010. Also attempted to wean off the prednisone since October of 2008…

Well this past Saturday was 2 weeks off the prednisone and I was going through pretty bad withdrawals. Very achy and it only got worse by end of day, feverish at times, and slight breathing decline. Then Sunday, started with a cold. Off to the dr Monday, and my breathing got real bad, and I blew a 33% PFT! 33%!! Haven’t seen that in 20 years!

So, back to the drawing board. Started oral antibiotics, and only 10mgs of prednisone. Had a long talk with my dr. Took bloodwork, key number to check is the IgE. I suspect it’s elevated again, which of course is treated with — prednisone. We plan to stay the course until Friday, and if not better, re-start IVs. Well my IgE did come back in fact elevated – but she chose not to up the prednisone until we retest it on Friday. We also discussed my sinuses. About 20 yrs ago, the ENT suggested surgery, but once I got my firm CF diagnosis it was determined it was not necessary. Then, back in 2008, when I had my 3 month migraine and saw an ENT, and had a sinus CT scan, he found chronic sinusitis and a deviated septum. He recommended surgery to clear out my sinuses as well as correct the septum. My CF dr decided against the surgery since my sinuses have not been causing me any problems. Now, she wants to repeat the sinus CT scan, have me visit the ENT again, and evaluate any progression. She’s not pushing the surgery, but wants to cover all bases now that I’ve had 2 bad years. She also suggested, as a precautionary measure, to get back with the transplant team over the next few months… “just in case”… I hate going there…

Deep down, I am so scared. On the outside, I am smiling, and believe I can fight through this like I always do. Just typing that brought tears to my eyes. No one really knows what the future holds for me besides God. I fear for how all this will effect my son. Takes me back to the day he was born and I realized that my CF may one day hurt him so deeply. I can’t do this to him. He needs me. He’s only 15, almost 16 and so anxious to get started driving. More fears for me.

Please, I need to find the strength. I have the best family support system anyone can ask for. My fight is just getting harder. Tears are still rolling down my face. Then, there’s the prospect of transplant. After befriending quite a few transplantees, that really scares me. I cannot believe the myriad of problems that exist. Every one different than the other. I just don’t want to go there. Sorry to you transplantees that are reading this, it’s just how I feel.

I realize, in order to be ready for transplant you have to be very sick, and it will be another chance atΒ  more time. I just can’t get out of my head that once transplanted, my days are numbered by ridiculous statistics out there.

It’s so hard. It’s so scary. I’m a control freak. I feel like I’m loosing it. It doesn’t feel good.

Please God, help me to heal… help me to get back to a manageable baseline… help me to be there for my son…

I apologize to anyone reading this for the negativity… I just really need to get this off my chest and cannot burden those close to me with this. It’s therapeutic to get it out and write it down.

Off to the dr on Friday, and we’ll see where my CF Journey will take me.

Best wishes to all you CFers out there…

My Latest IV Experience

This coming Monday will make 3 weeks on my IVs. Not sure when I will be done.Β  This was a scary IV experience. I haven’t been this sick since 1999. My oxygen went below 90, my breathing was horrible, my mucus production more than ever. I ended up on triple IV antibiotics, and IV prednisone before I started to feel any relief.Β  High blood sugars were also added to the mix. My dr wanted me in the hospital, but I insisted on staying home.

Scary. While going through this all I could think of was, is this ever going to turn around; will my doctor start the transplant discussion again; will my breathing ever get better; will I have to stay on o2 long term…..

Now things finally turned around πŸ™‚Β Β  …. no transplant discussion…Β  breathing improving … no more o2 needed … what a relief. And my sugars returned back to normal!

My concern now is will my fev1% ever return to baseline. It hasn’t over the past year. I’ve been on prednisone since October 2008, unable to wean off. Through this my fev1% has declined.

Please Please Please let me get back to at least 45%… My last fev1% prior to being sick was only 37% 😦

2011 BETTER be a better year. I’m sick of IVs – four times this year alone – ugh!