Going Down the Road Feeling Bad

Tuesday day started off like any other day. I woke up, showered, did my treatments, surfed the internet, and got ready for my day. However, the day was most certainly NOT like any other day.  Who was I kidding? It was the day University of Pittsburgh Medical Center (UPMC) would be meeting to decide if they would take me as a candidate for lung transplant.  After being declined by Duke University in December, UPMC was the center that might take me when no one else would. Yes there were interviews with other centers (IU & UK) lined up, but honestly if UPMC didn’t take me who would?  UPMC is well known for taking the sickest of the sick, the riskiest of the risky, and doing it all with better than the national average outcomes. During my visit it seemed that everyone I talked to reassured me that “Oh our son/daughter/spouse (insert name of really sick person) was turned down by center (insert name of one or more transplant centers) and UPMC was willing to take him/her.

What makes my case complicated? Well I have a history of rectal cancer. Thankfully that has been cured for more than two years and no nodes were involved. Two years out is enough for most centers. Also, I have multi-antibiotic resistant pseudomonas aeruginosa (MARPA). If these resistant bugs grow in your lungs then it can be another reason to be turned down. Lastly, I have esophageal peristalsis and reflux. This means that my esophagus has little movement and also that stomach acid comes up my esophagus and damages it’s lining. It can also damage the inside of a new set of lungs if left untreated. This is the reason Duke declined me. They thought my case was too severe. However, UPMC was willing to evaluate me.  During my visit, the head of the program Dr. Pilewski assured me that he knew all my issues and wouldn’t have brought me there if he didn’t think I could be a good candidate. Of course that was with the reservation that hopefully none of my other tests during evaluation showed anything weird. Since most of these tests were repeats of ones I had at Duke, I was feeling good on the road home from UPMC last Sunday.

So back to my day on Tuesday… I left home on the way to pulmonary rehab. I was really glad to have rehab as I needed the distraction to keep my mind off the UPMC meeting. Rehab went fine but I did need four liters of oxygen for some of my exercise which is more than what I’m used to. I left and drove north to run a few errands. At my first stop I thought to check my oxygen tank. I’d forgotten to refill it at rehab and noticed I was running low. Of course my thought was that I could squeeze in a quick lab draw at IU North Hospital before running out. At the hospital I started walking to the door and did not get far before feeling pretty short of breath. The weather was wet and cold so I decided to abandon ship and head for home. I started heading south on very busy Meridian street in rush hour traffic.

Then I really was headed down the road feeling bad. I started feeling light headed. A quick check using my pulse oximeter revealed an oxygen saturation of 72. YIKES!!! Anything below 88 is not where you want to be without oxygen. Obviously my supply had run out. In a panic I dialed 911 and told them my location. But then I got so short of breath I thought just the act of talking would possibly make me pass out. Would the EMTs get there quick enough anyway if I pulled over? Would they find me unresponsive and blue in the face? A mind without oxygen starts to get a little weird and I was starting to really freak out. Imagine having someone suffocate you with a pillow while you are driving during rush hour. That was me Tuesday.

In a flash of brilliance, my mind did remember where I could get oxygen close by. My mom worked at a surgery center less than a mile away. They did surgery so I knew they would have oxygen for sure. I got in a left turn lane to head that way. The left turn light was read. In a flash of stupidity mixed with fear, I slowly cut across three lanes of oncoming traffic while beeping the horn constantly to avoid collision. All the while 911 kept redialing me constantly trying to locate me. Thankfully I made it to the surgery center and laid on the horn again. A nurse getting off duty helped me. I told her to get O2 and that my mom worked there. Minutes later nurses descended and hooked up to O2. Then the ambulance came. They had been driving up and down Meridian looking for me. I’m still not sure how they found me. It might be that the nurse answered my phone calls from them. Honestly, my mind was reeling so much some of the experience is a little foggy. My mom came out next and joined me in the ambulance. My blood pressure was 200+ over 100+. Normally it should be 120 over 80. My O2 saturations did return to normal. We went back to IU North Hospital to get checked out just in case. Maybe I should never have left there???

The rest of the evening I felt pretty ragged. It felt like I sprinted a marathon. By Wednesday morning my body was back to baseline and I kept busy trying to keep my mind off the UPMC decision. They are supposed to call by Thursday and let me know. So here I am awake at 4:00 on Thursday writing this blog. It’s way more therapeutic than tossing and turning in bed. Between the prednisone I’m taking and the heavy things on my mind sleep is not the easiest thing to come by these days.  Here’s to hoping for a day of good news and safe travels. IU Medical Center is my next stop.  Leave the light on for me and remind me to pack some extra O2.