​Like any one who is struggling with some health issues, life begins to take shape around a new kind of cadence––that of tests, waiting for results, and doctor’s appointments.
 
The last two weeks have seen that rhythm repeated a number of times. The beginning of the month began with a CT scan, then waiting for the results from that and the inevitable appointment with a doctor to discuss said results. Adjustments were made to my meds, and then we waited another week for a follow up appointment from another doctor to go over those changes and review any further results. Then the wait was on for my bronchoscopy, which happened this past Monday. And now we wait for the microbes and all the stuff that could be growing in my lungs to grow out in a lab somewhere, and then in short order we will have another appointment to review those results.
 
I am not complaining, it is just always amazing how being sick can keep one so busy.
 
So, what are the result of these most recent tests? Unfortunately, it appears that the two infections that my body was fighting, and which seemed to have caused my acute rejection, are still down there in my lungs. My doctors were hoping that the long course of medications I was on from April to June would have killed them off, but it appears we fell short. From what I understand, the infections are not totally active doing damage, but they do pose a threat. I’ve therefore been restarted on some of the meds I was recently taken off of.
 
Overall, I am still feeling good. My weight has plateaued as I am more active now, my energy is up and I feel I am still gaining muscle.
 
Carrie and I find the disparity between how I’m feeling and the state of my lungs to be quite interesting. Because I am feeling well, we kind of allow ourselves to think that my lungs must also be improving, but when we get test results back and speak to the doctors it is still mostly a litany of bad news and confirmation that these lungs are shot.
 
We are incredibly grateful for how I feel, and the doctors see it as very good that I am feeling well and gaining strength, as they want me at my strongest going into transplant.  Once again, thank you for all your support and prayers during this journey. We feel your love, and we know that in all of this we are resting in the hands of God.  

Last week was another good week with continued progress made. Slowly packing the weight on, although still another 10-15 pounds short of where I was before I started getting sick; and slowly gaining some muscle back in my legs and upper body.
 
The highlight of the week was getting back on the bike and going for two bike rides. It felt good to be able to cover some distance, and to be able to get around and see nature without the hum and puff of my oxygen concentrator.
 
The main event of the week, however, was our transplant clinic visit and CT scan on Thursday. I forget if I mentioned it before, but back in April it was discovered that I had a 4cm hole/cavity in the middle of my right lung. This was caused by an infection and obviously gave us and the doctors quite the scare. The team has been monitoring it closely by way of CT scans and Thursday’s scan showed that the hole has significantly reduced in size. It won’t be viable lung tissue, but at least it is closing up and doesn’t pose as great a risk as it once did.
 
The doctors feel I am in a good position to continue on at home, just doing what I have been doing. They are not putting me on the waitlist yet, but we did talk about the timeline a bit more, trying to nail down what the right timing for being waitlisted will look like.
Even though I am feeling stronger and my body is getting more efficient with its oxygen use, my breathing tests did drop a bit in the last two weeks. This will probably be par-for-the-course going forward. My doctors don’t expect a sudden drop in my lung function, like what happened in May, but more of a consistent gradual decline (barring any infection of course).
 
The conclusion of the matter is that though I am feeling well and getting stronger, we are still firmly on the road towards another transplant. We are incredibly grateful for each day that I am feeling well and able to be at home. If I am able to remain stable I don’t need to go back to clinic until the end of the month, which in itself is also an encouraging sign from the transplant team.