I need to first apologize to my followers… I know it seems like I dropped off the planet. I recently read some of my last posts and I’m so glad I wrote those. It makes me appreciate where I am today. I did not die! I am no longer suffering!
I received my Double Lung Transplant on June 6, 2012 ! ! !
As you know, I was very sick, on very high oxygen by the end, and hospitalized often. I was suffering every day. And it seemed everyday I was declining. On June 1st, I was hospitalized as I had gotten to the point where just standing up made me so out of breath. They had to put me on high flow oxygen and attempted bi-pap but I couldn’t tolerate it. I was on 100% o2 at 25 liters. They placed me in the ICU to focus on my breathing.
I was told I would not be able to leave the hospital until new lungs came in. Very scary!
The days after this are a blur to me. I guess I was so sick that my mind just shut down. On June 5th I was told that lungs became available and was later told they were good to go! I was scheduled for surgery on June 6th at 2am.
I was told that when they were taking me in for surgery, the first thing I said to everybody was: I understand you’re all excited for me, but please take a moment to think of my donor family. They are going through a very sad time tonight. Then when I was almost in the ER they told me that I was sitting up on the stretcher saying “why are you all crying! This is a good thing! I’m getting new lungs! I’m going to be able to breathe!”. I was so happy… I have no memory of any of this. I so wish I could.
The surgery took 11 hours! My old lungs looked horrific. I was told I was very sick – duh!
Apparently I was septic and was kept intubated for about a week. I don’t know much of the details as I was highly sedated. I remember my husband asking me to squeeze his hand, and I did. I remember hearing some things, like I was running a fever and they needed to figure out why. They removed my port thinking it could be from that. I miss my port. I spent another week in the CCU and then finally to the transplant rehab floor. I was hospitalized for about 3 weeks. When I was finally able to get out of bed, I had extremely weak legs. I couldn’t believe it. Here I had new lungs and I was ready to use them and I couldn’t walk! It took a while along with physical therapy to get me going. I also lost 25 pounds sitting in a bed! My leg muscles were all flabby. When I got home, I continued with home physical therapy through the end of August and I also spent a small time on my treadmill.
My recovery was very slow. The one noticeable issue I had was that I wasn’t myself. I didn’t smile much, I slept a lot, I stopped watching my Days of Our Lives, which I had watched for over 30 years, I stopped participating in Facebook, I was just blah. I didn’t want to go out (although the 1st 3 months I stayed in intentionally as it was a sensitive time and I was most prone to catching something). I wasn’t gaining weight, no matter how I tried. Time passed.. Then finally I discussed this with my dr seriously in December. She brought up the possibility of depression. She said I could have some form of PTSD, since I was listed for such a short time (3 months), I didn’t have much time to process what I was going to go through. She explained that I went through a very big surgery and my life suddenly changed. I met with a psychiatrist and in January I was prescribed medication. By my March visit with the dr, I had gained 15 pounds and I was much more happy. By April, I was feeling like my old self again. It was just amazing. I’m back on Facebook. I’ve become addicted to some new shows, namely Revenge! I’m back to fundraising. I’ve had 3 dilation procedures to open up my airways. My pulmonary functions peaked at 86%, but dropped to 68%. Hopefully my next PFT will be better. I’m doing very well on my treadmill. I did have a little bump last month – I had pneumonia in my lower left lung and was placed on home IV for 3 weeks. I’m all better!
Organ Donation is a Beautiful thing. It can save multiple lives!