ECMO to go please?

Two years ago today I was laying in a hospital bed in the IU Methodist intensive care unit on the second floor. Idiopathic Pulmonary Fibrosis has done a number on my lungs. Leaving them pretty much toast at that point. “Toast” may not be the official medical terminology, but it’s accurate.

We refer to lung scaring or “fibrosis” as “honeycombing” because of the way it makes our lungs look. Well… a whole colony of honeybees would have felt right at home in my lungs with the state they were in.

Since being admitting I had slowly continued… I say slowly because it was a matter of weeks. But I guess I should say I continued my rapid deterioration. Time is weird in the hospital. At least to me it is.

Weird or not… I remember the day my doctor come in and described “ECMO” to me. The long and the short of the matter was that without it…  I wouldn’t be around much longer, but it was my choice to try it or not.

Even with 60 liters per minute of 100% oxygen  being pumped into me (as high as it could go)… my lungs just couldn’t do enough on their own to keep me going.

ECMO stands for Extracorporeal Membrane Oxygenation. In the most basic sense ECMO is a machine that can oxygenate the blood when the lungs can no longer do so.

I remember telling my doctor, once he had finished explaining the situation to me, “Balls to the wall lets do this.” without any hesitation. At that point, keeping with the bee theme, it was like someone had kicked over a nest.

The song flight of the bumble bee would have been totally appropriate as nurses went into high gear making preparations.

Not to be dramatic, but merely to be honest, I don’t remember much after that. I often jokingly describe my situation as reaching the point where, “I had two feet in the grave and was just waiting to lay down.”

But the way that day is described to me, by those who were there… It was much more like I had already laid down and was waiting to close my eyes.

I don’t recall much of the controlled chaos that ensued after I agreed to try ECMO. It is mostly flashes of blurred motion and still images. Its a moment that is hard to put into words. I don’t know if I was slipping away or was just getting real close.

But I’m told one of my nurses saw something that didn’t sit right with him. He went to my doctors and asked how soon the ECMO procedure would be. My doctors informed him “1 o’clock.” Apparently my nurse’s response was “He doesn’t have that long.”

My doctors hurried to bedside to check on me, agreed with the nurse, and I was rushed away to be worked on. Which is yet one more reason, among oh so many reasons, that I love my nurses.

My last coherent memory, before being hooked up to ECMO. Where I still felt 100% all there and alert. Was telling my doctor, “Lets do this.” Everything after that gets blurry and dream like until waking up with a chest full of tubing.

I lay there in my bed on the ICU. My midsection, just below the pectoral muscles, looking like a bandaged porcupine’s back. One clear tube lead from my chest to a large cart with a machine on it. Another tube traveling from different point on the machine, back to my chest.

In that tubing, so thick it made me think of a transparent garden hose, flowed my blood.

De-oxygenated blood was being pumped to the ECMO machine. Where is was oxygenated, pumped through a heater to warm it back up, and then back into me. From that point on, until I either got a transplant or I passed away, an ECMO technician would be at that machine 24/7.

That very next day I was up and walking. It probably took close to half an hour to get me up and moving. With another half hour after my short walk to get me back into bed.

I remember that I apologized, because it took so many people so much effort to go on such a short little jaunt. I’m sure I apologized a lot for this. As walks became a daily event, if not a twice daily event.

My shuffling posse consisted of a technician monitoring the ECMO machine, someone pushing the ECMO machine, someone all my medicine pumps, a person pushing the portable oxygen unit, someone pushing a chair behind me just in case, someone pushing or holding the vitals monitor, a therapist, and my assigned nurse if they weren’t tied up with another patient.

ECMO definitely saved my life and sustained it long enough for my to be transplanted. I think in more ways than one. I believe that my willingness to be placed on ECMO along with my determination to keep fighting afterwards helped my Doctors make the decision to go to bat for me when my time was pretty much up. ECMO or no ECMO.

I simply didn’t meet the qualifications to be transplanted. I was a walking skeleton. I weighed about a hundred pounds. Which was weeeeeeeell under my body mass index requirement. Feeding tubes going round the clock just couldn’t add any weight to my frame.

But my doctors saw me walking with all those tubes and my entourage in tow. They saw how much I was willing to fight. They saw me using that ECMO machine for all it was worth and I think it payed off.

My docs presented my case, got me listed, and ECMO kept me going until my donor’s lungs could be found and then installed.

So today, on yet another anniversary of sorts… I say thank you to the ECMO team at IU Methodist hospital. Thank you to the ECMO technicians who sat beside that machine for hours on end. Monitoring my blood, adjusting, calibrating, watching for clots, etc.

You all probably don’t get as much daily recognition as the more often seen Doctors and nurses. But wholeheartedly from me to you… Thank you so very much. I would not be here today if not for that amazing machine and you amazing folks operating it.

Thank you for being willing to do a job that requires you sit for hours in the same spot. A job that required you to operate that life sustaining machine as you followed my around the ward. Watching for clots that could kill me before my lungs had the chance. Maintaining oxygenation that would keep me alive. Thank you…

Sincerely, I am eternally grateful to you all.