Like a Rubber Ball.

So I started this post last night before I went to sleep and when I came back to it things had changed so much that I had to throw out the old one and start again. I won't give you a play-by-play of this week, partly because I've been running fevers and there are parts that are a bit blurred, partly because I've been on an intravenous dilauded pump that gives me .4mg every time I hit the button, and mostly because it will bore you. So let me tell you where we are today.

The infection in my lower abdomen is gone. My belly is still a little sore and a little fatter than I remember it being, but otherwise, back to normal. So that's alright. Except the fevers haven't gone away completely and they think that I have pneumonia.

In the last 24 hours, my condition has gone from scary and uncertain to stable and steadily improving. Last night I was on 100% oxygen by non-rebreather mask and my arterial blood gas readings were still showing a drop in the oxygen in my blood. They were getting constantly closer to having to intubate me and put me in a ventilator. Instead they tried a PH drug called Flolan or epoprostenol. When inhaled, it works to dilate the blood vessels that it can get to, so with the pneumonia blocking a portion of my lung, this drug is working to maximize the potential of the remainder of my lung tissue. Usually this this drug is given by way of a constant subcutaneous infusion pump, but they wanted a concentrated rather than systemic effect, so I've got an awful, heavy, awkward mask on that I might be able to take off for more than ten seconds sometime tomorrow. But it's working! I'm down to only 40% oxygen and my blood gasses are looking great. I have a PICC line and a direct arterial line so that they can take blood gasses frequently without needing to keep stabbing me. It's nice being stick-free. By Sunday my veins had become so inflamed that they weren't able to get a line in one at all and they tried everywhere; I had an intra-juggular IV for about ten minutes before it just failed

They're not actually sure if this is a pneumonia. It could be also be inflammation of my lung tissues. There are several big problems standing in the way of us figuring out the answer to that question. The first is that they would need to do a bronchoscopy. I'm not breathing well enough for bronchoscopy without a ventilator, which can be very dangerous and difficult to get off of, so that's not an option.

The second complication is that they've discovered that the small a hole in my heart that's been there my whole life has now started shunting deoxygenated blood from my right atrium to mix with oxygenated blood in the left, lowering the oxygen concentration for the entire combined volume of blood. This was apparently caused by the pressure in my heart becoming high enough that it further opened the small PFO that was there, and formed the shunt. The PFO can't be fixed now though. If they repaired the damage and blocked the hole, the blood would go back into my lungs at a high enough pressure to do some real damage.

So since they can't truly assess what the real problem is and because they can't repair the damage to my heart yet they're attacking it from three sides: the Flolan to open up my airways and decrease the pressure of the shunt, intravenous antibiotics for the possible pneumonia, and prednisone for the inflammation. I'm also on IV heparin to maintain anticoagulation, IV dilauded, self-administered up to once every ten minutes, for pain, IV zofran for nausea, and all of my regular pills.

So that's it for now, I'm going to go take a nap The doctor just informed me that because I'm down to only needing 40% oxygen they're going to start weaning me off of the Flolan and I may be done with this damn mask sooner than we'd thought. Yay!

1 comment:

  1. Hey Rachel,

    We have not heard from you in a long time. Have been very concerned for you and now starting to think the worst could have happened.
    If anyone else has info can you please post.

    Sheila (from PHA website)