Hi guys. In my last post I mentioned that I was having issues with my new lungs, and asked if all y'all were interested in following along with this part of my journey. I received some great feedback in the comments to that post, on Twitter, and off line. The response was very encouraging so here we go.
Before I get started, I want to mention that the issues I am going through are part of the lung transplant process for many of us. I'm not talking about my transplant rejection to be negative, quite the opposite. I hope to get some helpful information out there for folks who are on this same path. If you are pre-transplant and reading this, hopefully I don't cause you any undue duress with my posts.
There are two basic classifications of lung transplant rejection, Acute and Chronic. Acute rejection is the most common and can progress over a very short period of time. Acute rejection often resolves with prompt and aggressive treatment by an experienced transplant team. Around one month after my transplant, I experienced an acute rejection. My acute rejection was brought on by a simple Coronavirus and it took an aggressive antiviral treatment and steroid pulses to resolve the issue. My FEV1 dropped from 77% to 61% predicted over the course of the rejection episode. That acute rejection was rough, but I recovered and my lung function continued to improve. I have plenty of posts about the exercise and diet regimes that helped me to eventually achieve a FEV1 of 126% predicted. That's a 5 liter FEV1, I was pretty proud of myself. It turns out that building up that extra capacity was a very good thing as it prepared me for the second type of rejection, chronic rejection.
Chronic rejection is a scary concept that folks don't really want to talk about. There's very little information out there on the subject and even less from the patients point of view. Chronic rejection is, very basically, a progressive fibrosis that can have an obstructive or restrictive component. The umbrella term for chronic rejection is Chronic Lung Allograft Dysfunction (CLAD). The obstructive form of CLAD is Bronchiolits Obliterans Syndrome (BOS), and that is what I am Experiencing now.
At my peak, my spirometry results were FEV1 of 126% and FVC of 113% predicted. This was in July of 2016. In October of 2016 my spiros started to decline. We did several different treatments to try and stop this decline. We adjusted my medications, performed a couple steroid pulses, and in May of 2017 I underwent a Nissen Fundoplication. My decline in lung function stabilized in June of 2017. FEV1 = 64% and FVC = 79% predicted. Lung function spirometry remained stable until this past January when they started to decline once again. The Team decided it was time for me to undergo a Thymoglobulin course of treatment. The treatment itself wasn't that bad, I experienced the common side effect during and after the first couple of infusions. Before starting the treatment I had to have a bronchoscopy and quite a few other tests to ensure that I had no infections or other issues. I developed a slight fever after the bronch that delayed the treatment for a couple of days while it was resolved. It would be a bad idea to further suppress my immune system if I had an active infection so I ended up staying 11 days at my home away from home, the 10th floor at UT Southwestern Clements Hospital. It took seven infusions of the Thymoglobulin to drive my CD3/CD4 T-Cells down to <25 cells/ul. It's a good that we seem to be past the most dangerous part of the flu season, doing this in November would be much scarier than it is today. I still have to be very careful about infection control and limit my exposure to the public, but the fewer viruses in the air the better.
Image from Trappancs
There are two basic classifications of lung transplant rejection, Acute and Chronic. Acute rejection is the most common and can progress over a very short period of time. Acute rejection often resolves with prompt and aggressive treatment by an experienced transplant team. Around one month after my transplant, I experienced an acute rejection. My acute rejection was brought on by a simple Coronavirus and it took an aggressive antiviral treatment and steroid pulses to resolve the issue. My FEV1 dropped from 77% to 61% predicted over the course of the rejection episode. That acute rejection was rough, but I recovered and my lung function continued to improve. I have plenty of posts about the exercise and diet regimes that helped me to eventually achieve a FEV1 of 126% predicted. That's a 5 liter FEV1, I was pretty proud of myself. It turns out that building up that extra capacity was a very good thing as it prepared me for the second type of rejection, chronic rejection.
Chronic rejection is a scary concept that folks don't really want to talk about. There's very little information out there on the subject and even less from the patients point of view. Chronic rejection is, very basically, a progressive fibrosis that can have an obstructive or restrictive component. The umbrella term for chronic rejection is Chronic Lung Allograft Dysfunction (CLAD). The obstructive form of CLAD is Bronchiolits Obliterans Syndrome (BOS), and that is what I am Experiencing now.
My hospital follow up exam at the clinic was this morning and it turned out very well. My spirometry went up a bit compared to my pre-hospital tests and lungs looked and sounded good. Today's Spiros = FEV1 - 51%, FVC = 71%. That is still plenty of capacity to be living an active and wonderful life. My SpO2 (blood oxygen) readings are between 96 and 100% so I'm getting plenty of oxygen even during light exercise. I do get out of breath much easier so pacing myself when doing chores and the like is now the norm. I am still in much better shape than I was for more than a year prior to my transplant. These issues really are a part of the lung transplant package, and will be until researchers can grow new lungs using the patients own DNA. Even better yet would be to find a cure for MS, IPF, COPD and the other diseases that require a lung transplant. Until then, we do what we can do and enjoy this wonderful gift blessed to us by a special donor and donor family.
A future post will include imaging and test results showing how my lungs are being affected. If there are any lab or test results that you are particularly interested in, ask about them and I'll include them also.
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