My Journey with Cystic Fibrosis

How things have changed.

cfjourney — Tue, 17 Jan 2012 21:53:05 +0000

It’s been over a month now that I’m on oxygen 24/7. I started my 6th round of IVs for 2011 on 12/24 and will be completing them later this week. After all this, how do I feel???

Just walking down the hall in my house makes me run out of breath
I need to raise the o2 when I go wash up in the morning because I run out of breath
Basically, everything makes me run out of breath
Looks like I will be on o2 continuously going forward
Bottom line: my CF took a drastic turn south in November/December

What now?

finish up my transplant evaluation testing
probably get listed for double lung transplant
may require IVs often
pulmonary rehab at a local hospital

Boy how things have changed.

I was always so fearful of the transplant option. I always felt like it meant that I would only have 1-3 years post transplant to live. But, now I understand that when you are ready for transplant, you are in fact extending your life as my life as it is now is numbered and is no way to live. I am so thankful for all my CF Transplanted friends! They are doing so well and are living into 5 and 10 years post! I even met someone that was 20 years post! I am definitely scared. I don’t know if I’ll be part of the good statistics. But I WILL DO WHAT I HAVE TO DO TO STAY ON THIS EARTH WITH MY FAMILY. Part of me hopes that I will start to improve and will be able to postpone the whole transplant thing. Oh how I wish this to happen. Only time will tell.

OH, How Things Have Changed. . .

One step forward… Then two steps back…

cfjourney — Fri, 13 Jan 2012 01:18:27 +0000

Yesterday my o2 improved a bit, and today it went back. I was so short of breath today. Every effort had me huffing and puffing. Then when PT came to clap me I coughed up so much mucus! It had been getting better, now worse. But, afterwards my breathing eased up a bit and my o2 improved.

So this suggests the infection is still brewing. So, tonite I had to up the Polymyxin from 50mgs to 60mgs. My doc didn’t want to up it too dramatically since my kidney functions have been doing well.

PLEASE let this work. I need a break! I need to feel normal again. I really hate CF.

My CF Journey … Yup… What a journey…

cfjourney — Thu, 12 Jan 2012 01:12:25 +0000

This past week has been probably the worst in my CF Journey. 5 days ago I had an appointment with transplant. My hubby came with me. I needed a wheelchair and oxygen. The meet with the transplant doctor was very informative. I love her personality, empathy and frankness. So I’ve had several of the transplant eval tests done while I was hospitalized. I have a few still to go. Basically, at this point their is a high level of concern with regards to how quickly I have declined and where I’m at now. She suspects my transplant score will be in the 30s, and people usually get called when they’re in the 40s. We won’t know my score until all tests are complete.

I had another incident, and it was at transplant. They needed a urine sample. My hubby came in with me, o2 and all. So, hovering to pee in a cup took too much out of me that my o2 dropped and was about to feint again. My hubby took me outside into my wheelchair and quickly obtained an o2 tank that went to much higher levels than my portable. He pumped it to 12L and I eventually came back to normal. It is so scary to feel like you can’t get enough air! Oh, and I forgot to mention that when they took my vitals when I got there, my 5 ft walk to the chair dropped my o2 to 75, while on 4L! Again… Scary…

So I’ve been huffing and puffing with any effort, wearing o2 on 4-5 liters 24/7. Yesterday I was able to drop to 3L. Today my resting o2 w/o o2 went up from 78/80 to 85.

I have had so many people praying for me and prayer chains in progress. It seems to be working. I hope it continues.

My hubby is still not able to accept the idea of transplant. I can understand that. If you felt as bad as I do, I think the prospect of transplant can be accepted a bit easier. Of course I hope and wish I can recover and postpone the transplant option! So, 2 days ago my hubby decided to bump up my o2 and put me on the elliptical for 5 minutes. He helps with moving the arms, to ease it up for me. Now, this was very hard, but necessary! I haven’t been moving much. He had me do this yesterday for 5m and today for 6m. Still very hard, but nice to have a live in coach.

Oh, and last Friday I was put back on the Polymyxin iv at half the dose from before. Its more manageable. I can walk! I have the numbness in my face, fingers and toes. Who cares? As long as it helps!

I don’t know where this journey will take me. I just hope I can fight my ass off and get to an acceptable baseline so I can enjoy life again.