Tuesday, April 5, 2011

"Rolling with the punches": An exerpt from Julie's Journal

March 31, 2011

I received a double lung transplant on March 5, 2011.  It was successful and for that I am very grateful.  I am still recovering, but am doing great.  I can't complain, although there are bumps in the road I have to deal with.  For example:
1. In the hospital, I had a stomach ache so bad, Dave had to come up at like 2:00 in the morning to be with me. (Please excuse my sloppy handwriting, I just did an albuterol treatment).  This stomach ache was from the antibiotic Cipro (taking it without the anti nausea med Zofran).
2. Not being able to be with my babies, or hold them. Ben and Jack have had coughs and runny noses.  Walking around the house with a mask on and trying to stay away from them has been extra hard.  Thank goodness for our nanny Mary.  She has been our saving grace.  And my husband Dave; He has been wonderful with taking care of the boys and doing the grocery shopping.  He does so much for this family. 
3. When the pain pills wear off your body is trying to protect itself so I would get a purr like sound in my lower airways.  It felt like mucus was in there and it would create a little bit of a collapse.  Early on after the transplant, my x-ray showed I had a little collapse up by my right shoulder.  They had to do a couple bronchoscopies to clear out the big airway so the little airways would be able to open back up.  When you have a collapsed lung that sounds scary, but really they can fix it & there's nothing to worry about.
4. Prednisone makes me have all the side effects: water retention, moon face, protruding stomach, depression, mood swings, and high blood sugars.
5. First bronchoscopy with a biopsy at day 21: Lower airways are inflamed, no rejection, but treated like it.  Intravenous Solu-medrol was given Thursday, Friday, and Saturday for 50-60 minutes.  Its a steroid in the same family as Predisone and has the same side effects only this was about 50x my daily dose so they were amplified.
6. Bypass during surgery: This was unexpected but my CO2 levels were too high.  They had to cut the end of my sternum off and bypass my lungs for over 4 hours.
7. My knee hurt from "water on the knee" but after the Solu-medrol, the pain has left.

At the same time, things have gone extraordinarily well too:

1. The lungs were a perfect fit.
2. The surgery was a success.
3. My incision is healing up great.
4. I have had a fast recovery and was only intubated for 24 hours post op.
5. I had my first walk only a few hours after I was extubated.
6. I was in the hospital for only 9 days, and they could have discharged me in 8 days. (Sometimes things move slow up there)
7. My first PFT's on day 19 were 68%; I was most likely around 25% prior to surgery
8. My PFT's on day 21 were 71% and that was the "Best they've seen" (for a cystic fibrosis patient post op) said the Lead RT in the CF unit.
9. The bronchoscopy on day 21 showed pink lungs and Dr. Cahill said, "I'm bored."
10. During rehab I am able to advance and work up a sweat every time I go.  Before, I didn't have the lung function to even break a sweat.
11. The first time I went to rehab my O2 sats were at 99% when I got there.  I used to always desaturate when I would go down there.
12. I was discharged from the hospital without oxygen.

1 comment:

  1. this list is so interesting to me!

    your recovery is a marvel. wow. life is pretty sweet. xox