one day at a time . . .

Archive for the ‘IVs’ 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: https://youtu.be/jOFpNqCupcg

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

As time passes …

I know it’s been a while since my last post. It’s been rough. I’ve been on and off IVs and am now on the worst one ever, the polymyxin.  Started it Wednesday night after a little over a week on another IV med.

I did get a CALL for lungs on Wednesday, May 16th. It was a very bad breathing day for me. I woke up breathless, it was very scary. My husband had to get me the liquid o2 so I could put it up to 15L. It was a scary episode. And when the call came at 4pm, I just didn’t know how to feel. Just anxious I guess to get to the hospital. I was so short of breath, it was hard to change, and even just move.

When I got to the hospital I actually had to wait for a bed! Wait! What! Lungs can’t stay out of the body for very long! But what I hadn’t realized is that my donor hadn’t passed yet. It was a cardiac death, which means they were brain dead and the family decided to pull the plug. The “pulling” of the plug occurred much later. What happens in a cardiac death donor is they pull the plug, allow their heart to stop on it its own, the doctors CALL the death, then they get rehooked up and brought back to life to ensure the organs are still working and they now have time to harvest the organs.

I was in a room for a couple of hours, had my blood drawn and ekg. Then a call came in to the dr and they literally ran me in my wheelchair to the ex-ray floor. Literally running! I thought – this must mean it’s a go! I was the primary for the lungs! Then they ran me to the holding area and took more blood. After about another hour we were told that the lungs were no good and we simply went home. So I got the call at 4pm and was told it was not a go at about 10pm. All the family that had gathered at the hospital were disappointed, but for some reason, I was OK with it. I felt that I didn’t want any old lungs! And I still had so much to do in preparation for the Great Strides walk that was the following Sunday! We ended up raising over $50,000! Unbelievable! I had 89 team members at the walk. It was awesome, however I was declining.

Now, 5 days after the walk, and with this horrible medicine, I am now truly anxious for a suitable donor. I am so hoping I get the CALL this weekend. I am asking for prayers and prayer chains from anyone that can!

End stage lung disease is truly ugly. You are so limited. Coughing like crazy, breathless all the time, attached to an oxygen leash, and so many worried family and friends.

Please… Let this end soon… I need my new life to begin…

I can’t wait to take a deep breath… to run… to play with my niece without running out of breath… to show the world what I can do with the donated gift of new lungs…

one day..

I will..

Hopefully real soon…

Waiting for the call…

It’s only been 3 weeks since I’ve been listed, but it’s amazing how I just continue to decline. I’ve been on several different IVs for about 3 weeks now. I’ve been bumped up on the list for my blood type and I’m next in line for my size. I never thought I’d move up the list so fast, but I’m at the point where each day is such a struggle. Breathing has become so difficult. It’s so hard to just get out of the house for pulmonary rehab. I can remember when I used to say I don’t ever want to have to have a transplant. But, getting to this point, I understand that it’s now my only hope. I feel like a shell of a person, just surviving day to day waiting for the phone to ring. My quality of life really sucks.

I hope that call comes soon…

I hope I don’t reject…

I hope I live for many years and learn to enjoy the simple act of breathing…

I want to learn how to run… to move… to just be free…

I think of my unselfish donor daily. It’s weird waiting for someone to pass on, but I keep telling myself that they would have passed regardless of my need for a transplant. They we just unselfish enough to save the lives of several strangers while their family and friends are mourning their passing.

Until next time…

 

LISTED

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…

* 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…

So TORN…

One step forward… Then two steps back…

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…

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.