Back to Normal?

Well, waking up at 4 a.m. and waiting for labs is normal, right?

So, on day two out of the hospital I had the privilege of interacting with Allina's finest EMT's again. A ride with lights and sirens down 35W to UMMC was once again in the cards for me. This time? Totally random emergency: My Hickman catheter, the catheter that has been delivering life-saving Remodulin directly to my heart for the last three years fell out in the shower. It wasn't pulled. It wasn't snagged. I looked down and it was lying on the floor and my heart was pumping blood straight out of the hole in my chest. What the hell? Grabbing a bunch of gauze and holding it to my chest to try to stave the flow of blood, pulling some clothes on, running a comb through my wet hair and I was ready for the ride. No chance at sitting through a 3-hour play at the Guthrie for us tonight.

The wound clotted nicely and then the only thing to worry about was getting that life-saving elixir into my heart -- a 4-hour half-life for safety, but I start feeling symptoms after 60 minutes. It took about that long to get to the Emergency Department and get a peripheral IV started for the Remodulin. A peripheral line is good in a pinch; however, the Remodulin is so caustic on the veins, it is essential to get some kind of a central line going as soon as possible.

Getting a Hickman catheter in my chest requires more resources than are readily available on a Saturday evening, so a trip to interventional radiology to put a PICC line in my arm was called for. The downside of a PICC line is it is hard to disguise. The upside? They put in a dual line so I won't have to get needle pokes for labs! Yay for me!! I'll take these small victories wherever I can find them and after three weeks of twice daily labs, my veins were completely worn out.

I'm hoping to get another Hickman -- I'm accustomed to disguising the IV and they will want a central line for the post-transplant administration of medications, so that means another overnight stay at the hospital, but it will be worth it. I'm hoping they can leave the PICC line in too so I don't have to have any more needle pokes, but that may be greedy of me and too much of an infection risk.

Hoping the rest of the week is fairly quiet - I'm trying to get back to a normal routine and I only have one more hurdle (an angiogram tomorrow) to clear to be officially listed. Fingers crossed that that will happen on Thursday when my case is presented to "The Team."

Normal at my house is only a setting on my dryer.