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…
Hopefully real soon…