As you can probably guess, I've spent a lot of time of late restudying some of my test results to get a better understanding of this chronic rejection issue. Here are some of my totally unprofessional, uneducated, and quite possibly off the wall thoughts and conclusions of some of these past results.
Again, this is just me thinking out loud and sharing my own personal data. Each of us on this journey has our own unique path.
The high point of my FEV1/FVC chart occurred in July 2016. The next data point is Oct '16. My annual exam in Jan of '17 shows the beginning stages of my rejection.
One of my favorite screenings is the Ventilation - Perfusion (VQ) Scan. The VQ scan looks at both air and blood flow through the lungs. One of the things I like about this exam is that I can watch the images develop while the scan is being performed. Another thing I like is that changes are pretty easy to identify. I've had four VQ scans, one pre-translpant and three during my annual checkups.
Here are some of the findings from my second annual post-tx VQ scan
FINDINGS:
On the ventilation images, there is inhomogeneous distribution of the Xenon-133 radiotracer throughout both lungs with decreased tracer distribution as well as air trapping in bilateral mid lung zones at 3 minutes .
On the perfusion images, there is heterogenous uptake of the Technetium-99m MAA radiotracer by both lungs. Matching perfusion defects are noted in bilateral mid lung zones, which appear more prominent than on the prior study. Another subsegmental defect in the left lung base appears unchanged since the prior study. No moderate/large mismatched segmental perfusion abnormalities in either lung.
There was no air trapping indicated my first annual exam. here is an excerpt from my third, and latest, post-tx VQ scan.
Impression:
1. Matching ventilation and perfusion abnormalities in the lungs in a nonsegmental pattern. There is retention of xenon gas seen in both lungs consistent with small airways disease.
Also noted in the perfusion findings: There are small stable "rat bite" defects at the lung bases bilaterally..
From what I understand, "rat bites" are just small perfusion defects and I'm not sure what they have too do with life, the universe, and everything. Here are a couple images from 2016 and 2017. I don't yet have 2018.
See what I mean about being able to see the changes without having to read through the medical jargon?
The main purpose of the VQ scan is to detect Pulmonary Embolisms (blood clots), and on that front I passed with flying colors. No blood clots in these lungs. What I find interesting about the scans is that I can see the changes in air flow. They are a nice visual representation of what's going on in there.
CAT scans (CT) of the chest are a common pre/post transplant scan. CT stands for Computed Tomography. I've had seven CT scans of my chest post transplant. CT scans are quick, noninvasive and give the Team a good snapshot of what's going on. I'm not very good at all when it comes to reading my lung CT's, but my Team does a great job of explaining them to me.
This is excerpted from my January 2017 scan:
IMPRESSION:
1. Status post bilateral lung transplant.
2. Areas of air trapping on expiratory images in both lungs and may represent bronchiolitis obliterans in a post transplant lung patient.
FINDINGS:
Lines and tubes: None. Lungs and pleura: No pleural effusion. No pneumothorax. Status post bilateral lung transplant. Linear band of scarring again seen in the lingula and anterior left lower lobe. Areas of air trapping are seen on expiratory images in both lungs...
This was the first time that Bronchiolitis Obliterans (BOS) was mentioned. We talked about chronic rejection during that annual visit, and several other times in 2017. We decided to hold off on the Thymoglobulin treatment (more on that here) as I had plenty of lung capacity available and we looked at other options. In April '17 we got things stabilized until January of '18 when lung capacity started to decline once again.
Excerpts from my January 2018 scan:
IMPRESSION:
My 1. Multiple punctate pulmonary nodules not significantly change.
2. Bibasilar air trapping on expiratory images. The differential includes bronchiolitis obliterans and a post transplant lung patient.
FINDINGS:
Lines and tubes: None. Lungs and pleura: The trachea and central airways are patent. There is mild bronchial thickening. The lungs are clear of infiltrates and effusions. There is biapical parenchymal scarring. The multiple punctate pulmonary nodules annotated on the axial MIP series these are without change. There is bandlike scarring and or atelectasis in the anterior-inferior lingula...
So I've got some air trapping and progressive scarring going on. The scarring is not nearly as predominant as it was pre-transplant.
Another test that I find informative for tracking my lung health is my DLCO (Diffusing Capacity of the Lungs for Carbon Monoxide). DLCO measures how well lungs transfer gasses to and from the blood stream. It was a good measure for tracking the progress of IPF prior to my transplant and I see a correlation with what's happening now. At the moment, I can't find my results from my 2017 annual visit and I have a request in for that data from my Team.
Here is a chart showing my pre and post transplant basic lung function testing that includes DLCO, FEV1 and FVC. I didn't start charting my tests until later in the progression of IPF, but I do have the records if you are interested.
My 2016 DLCO was 86.23% and this last one was 52.3%. The test summary indicates that I have "Moderately severe obstruction with impaired diffusion". I think I can remember what the 2017 DLCO was, but won't post the numbers until I get verification. I'll edit this post then.
I've been asked how I get all of my test results. My Team at UT Southwestern utilize MyChart to provide tests and lab results to their patients. There is also a MyChart app that provides a nice percentage of the functionality of the full desktop version of the program. For more in-depth data I utilize a service from PicnicHealth. By using PicnicHealth I have access to all my electronic health data including doctors notes, actual images from scans and x-rays, and pretty much everything that is available electronically concerning my health. My January data isn't listed there yet so I can't update my VQ images. If you have IPF, you can access PicnicHealth via monARC Bionetworks. The cool charts are from self entered data on PatientsLikeMe.
Those are the primary scans/tests that I feel show the progression of chronic rejection (BOS). Again, this is just my interpretation and I may be mistaken, but it is what I get out of my testing.
I also have plenty of data on blood chemistry, blood counts and immune system function since my transplant. If you are any labs that you are interested in knowing about, just ask.
With all of this talk about chronic rejection I'm sure some reading this have questions about my quality of life. I have to say that I feel great. Yes, I do get out of breath easily now, and yes my twice daily spirometry can be disheartening, but I feel great. Just this Spring our oldest grandson graduated from the Air Force boot camp and I was able to tell him just how proud I was. These lungs are still doing a great job of supporting the rest of me. I understood going in that a lung transplant wasn't a permanent solution and that every previous moment with new lungs was and is a blessing. I'm writing about this chapter of my journey because information about these issues from a patients point of view is scarce and hard to find. Hopefully this information will be helpful to someone who is on the same path.
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