The journey

For many, many years, “breathing is overrated” was my favorite snarky catchphrase. But now I’m starting to think that I just might have been mistaken.

It’s so wild being able to breathe! So many simple tasks that were beyond me for quite a while are suddenly, wondrously easy. Things like being able to walk from one room to the next, or prepare food, or do dishes, or take a shower without being completely exhausted afterwards. It’s been months since I was able to do any of those things, and I’m so unbelievably grateful every time I’m able to get up and do something without having to calculate whether I have the oxygen and energy for it. It’s a whole new world, and I’m loving it!

Facebook tends to give a skewed impression of people’s lives, as we’re more likely to post the good instead of the bad. I think mine is a little more real, but at times I too will downplay things or try to make them look less dramatic. My previous health updates were definitely real, but I don’t think they fully encompassed how bad things got right before my transplant.

During the week and a half that I was home between admissions, things were pretty terrible. I just couldn’t get enough oxygen, and spent most of the time either sleeping or writhing and groaning in my recliner. The only time I got up was to use the bathroom, and that was a huge ordeal that sent my oxygen plunging and sapped my strength. I hope none of you ever have the experience of trying to decide whether it’s worth the effort to go to the bathroom, or if you’d rather just hold it a little longer because getting up and trying to walk is going to be so awful.

Things were even worse once I was hospitalized. At that point I couldn’t even manage walking the 5 feet to the bathroom anymore. My stubborn dignity refused to use a bedpan, so instead I had a bedside commode. And even on high flow oxygen, just getting out of bed and onto the commode was enough to drop my oxygen and utterly exhaust me. I pretty much spent most of my time looking like this:

During that time I started having “air hunger,” which meant I felt like I was suffocating even when my oxygen wasn’t too low. Thankfully they were able to treat this with oxycodone to make me more comfortable, but it was still a pretty miserable experience. I also came VERY close to needing to move to the ICU and be put on a ventilator, as my oxygen needs almost surpassed what could be provided on a regular unit via high flow. If the transplant had been even a few days later, I have a feeling I would have ended up in the ICU.

And throughout all of this, of course, I was coughing up huge quantities of thick, dark mucus. For almost 2 months straight I coughed up at least half a specimen cup every day, and some days came close to filling the cup. No matter how many treatments I did or how much I coughed out, there was always more. It was utterly exhausting.

Basically, things were really terrible. My discharge paperwork says that I came to the ER with “respiratory failure.” My lungs had just about given up, and I was – quite literally, and faster than anyone had anticipated – dying.

And then the transplant came through.

The before and after is absolutely night and day. Even while I was still in the ICU post-transplant, even with all the pain, I still felt SO much better! And as the days go by, as I continue recovering and getting stronger, things just keep getting better and better. I marvel at all that I’m now able to do, and can only imagine all the doors that will open for me as time goes on. It is truly miraculous.

Don’t get me wrong, coming out of a double lung transplant was no picnic. I woke up in the ICU with a ventilator down my throat, a nasogastric tube, 2 long, stapled clamshell incisions, 6 drain tubes coming out of my chest, a triple lumen catheter in my jugular, IVs in each arm, and a Foley catheter. I was also hooked up to multiple monitors and had wires going everywhere. Initially my hands were restrained to prevent me from pulling anything out. Once I was alert I wanted to communicate, but couldn’t because of the ventilator. We tried to use a letter board, but unfortunately didn’t realize that my vision was off. When I thought I was pointing at one letter I was actually pointing at something else, much to everyone’s confusion. Which is why that brief post I made post-transplant took 2 hours to write! Things went a little better when we got a pen and paper, and of course once the ventilator was removed I was eventually able to talk again.

Even once I got out of the ICU and onto the transplant unit, I was still very incapacitated. I was very weak and spent a lot of time sleeping. The painkillers often knocked me out or made me loopy, so I wasn’t exactly up for visitors. I had to relearn how to walk, how to swallow, how to be a basically functional person again. Breathing was absolutely wonderful, but it was still a very intense time.

I still have a long road ahead of me. It will take months for my incisions to heal, and some of the nerve damage may never heal fully. I will spend the rest of my life with the terrifying, unpredictable specter of rejection hanging over my head. My immune system will always be low in order to prevent rejection, so I must forever be extremely germ conscious and do everything possible to avoid getting sick. My days will be filled with pills and treatments to keep me going, including the whole new world of managing diabetes. And of course, though my lungs now have different genetic material and are completely CF-free, the rest of my body still has CF, so I still have non-respiratory CF symptoms that need to be managed.

But, hopefully, it WILL be a long road, with plenty of time for all kinds of adventures that I thought were beyond me. Hopefully I will have the chance to blaze through all kinds of open doors in joyous victory. And no matter what happens, however long I get, the breaths I’ve taken thus far make it all worthwhile.