What's up Nina? Thoughts from a Cystic Fibrosis Survivor & Lung Transplant Recipient

My Transplant Story: Part 3 – Waking up in ICU

I went in to surgery with the plan to ventilate one lung and transplant the other, ventilate the other lung and then transplant the second, but since my lung function (17% a month or more before) was not strong enough I had to be placed on a heart lung machine. In doing this they were able to, and they took BOTH LUNGS OUT, yes, I was laying on a table with NO LUNGS. Awaiting the surgeon to put the new lungs in, that to me, is just CRAZY… actually, crazy doesn't even begin to explain that.

I also got to meet some awesome cystic fibrosis and post transplant people while I was in the hospital!

Now waking up in the ICU was a whole other story. I was still vented when I woke up. Which is sometimes common but they said you would get off the ventilator in usually a few hours to a couple of days. This was not the case for me. I was handling things somewhat well so the started taking me off the sedation pretty quick. A couple times I sort of panicked on the ventilator. But after a few days I was going better. Every once in a while I would have a hard time or hard day, but I have to say, NOTHING about being awake on the ventilator is fun. Since I had been awake on the ventilator for 3 weeks I was going back an forth with my ability to handle the huge scratchy tube down my throat and the machine breathing for me. Sometimes I would gag and vomit nonstop. Once I started having trouble it was almost impossible to get my bearings back.

One of the reasons I was on the ventilator for so long was due to a perfusion injury that the new lungs suffered before or during the surgery. The other reason was because I had to start breathing on my own before it could be removed, so they would slowly change the percentage the machine was breathing for me and sometimes I had setbacks where I almost had to start over. At this point if it wasn't for my mom being at my side everyday coaching me to breathe I might still be on that thing!!

The reason I was awake the most of the time (as they would normally sedate you) was mostly because they had been trying to keep Ventilated ICU patients awake and walking so that they would not have problems from being sedated, bedridden, and that kind of thing. So yeah, I was up and walking, which I am thankful for everyday they made me do it! Because it made all the difference in my recovery. Even though it was HARD, and I really did not want to walk with all those tubes hanging out (we counted 8, 4 chest tubes, neck IV, ventilator, catheter, Port IV accessed, feeding tubes, among other things), I did it, and I believe it is the only reason I am able to run as much as I have 6 months post transplant.

Above: Walking in the ICU on the ventilator.

Initially lung transplant patients would wake up already off of the vent, if not a day or two at the most, and probably sedated, besides this ICU was trying to keep people awake, they sedate you at first to see how you handle the vent. So this is not what I was expecting, waking up to 3 weeks on a vent was a lot to sit through, especially with limited communication ability AND NO FOOD OR DRINKS. All I have to say is, extremely frustrating!!! I was NOT PREPARED for this, I am not sure what could have been done to prepare me, but it was a shock to say the least.

Read part 4 of the story tomorrow!!

If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.

My Transplant Story: Part 2 – The Call.