My Latest Hospital Stay

Hey all, I know it has been awhile since my last post.  Things have been in a bit of flux and I wanted to wait until I got a bit of stability before posting.  That's not going to happen, so I might as well post away.

I had mentioned that my Team wanted me to have Extracorporeal Photopheresis (ECP and that UTSW was trying to be a part of a Clinical Study that included ECP for post lung transplant patients in chronic rejection.  Well that's not going to happen.  We didn't become a part of the study and ECP is not covered by Medicare for this application.

Events over the past few weeks may make that point moot anyway.

In late October I had some chest pain on the right side.  It kind of felt like pneumonia but only on the right side.  My daily Pulmonary Function Test (PFT's) showed my lung function had fallen off a bit. Went in to see the Team and found that the upper lobe of my right lung had collapsed.  We left the clinic and headed to the hospital for a bronchoscopy.   This was bronch #19 for me, and the roughest of the lot.  It was also the hardest my doctor remembers doing.  The docs who perform the bronch's are the Team doctors, so we know each other well and can have very honest discussions about what's going on. Getting six biopsies from the upper lobe caused a good deal of bleeding and I woke during the procedure gagging and coughing. On a happy note, the procedure, or the coughing, opened up my lung and things looked good after.

I was scheduled for a CT the 2nd week of November and a couple of days before the test my chest felt off again.  Not as bad as before, but off.  The CT showed that my that lobe had collapsed (Atelectasis) again, so I was off to the hospital on Saturday.  Now one really nice thing about being a part of this team is the fact that when you head into the hospital, whether it is to the ER or a routine admittance, they are waiting for you when you get there. So I checked in and whisked up to the 10th floor, our home away from home.

To make a long story shorter. We tried Intermittent Positive Pressure Breathing (IPPB), BiPAP, CPAP,  an incentive spirometer and the Acapella (flutter) device. We also did IV antibiotics and another bronchoscopy. And once again, I'm unique. The team hasn't seen a post transplant lung collapse like this without a physical cause.  We also couldn't get it re-inflated. So I'm back in the comfort of my own home, on a 60 mg Prednisone taper and three weeks of oral antibiotics.  I'm also using the incentive spirometer and the Acapella.

I'm feeling good, and my Pulmonary Function Tests (PFT's) are a bit better than prior to the hospital stay.

Just another paragraph in this chapter of my story.  An interesting one to be sure, and one that hopefully helps my team with future patients.  This paragraph has to include my CT (with contrast) from the hospital:

IMPRESSION: 

1. Redemonstration of complete collapse of the right upper lobe, no definitive endobronchial lesion identified. 

2. Grossly unchanged multifocal groundglass opacities in the bilateral lower lobes. Findings may represent infection/aspiration. 

Chronic allograft lung disease is also on the differential.

My next annual VQ scan will be interesting.

Edit: I forgot to include the leading 'best guess' as to what happened.  Back in April I underwent a Thymoglobulin treatment that dropped my T cells down to < 25 cells/ul. That is very low. To help prevent a serous fungal infection, I took Vfend, a potent anti fungal for 6 months.  Vfend has a large effect on how my body metabolizes Prograf, a major anti rejection drug.  When transitioning off of Vfend, the Prograf level in my body dropped low, this may have triggered a rejection event. Imaging does indicate that my chronic rejection is progressing.