So I received some not so great news from the doctor. While they still have no clear answers to why I keep getting intestinal blockages, he’s leaning towards acute rejection in some area of my intestines, but this is only a guess due to there being no evidence proving it.
But what the actual bad news is, is the evidence of donor-specific antibodies (DSA) in my immune system. These are a natural defense mechanism the immune system develops to go directly after the transplanted organs. This is not something that the usual anti-rejection drugs can handle, which is why they are still likely to form despite being on medication, and many patients already have them in their system pre-op. Luckily, for new transplant patients, they can now test for these antibodies and give a probability of success before the operation.
For those of us post-op, are three ways to deal with these:
The first is an aggressive method that uses dialysis to filter the blood of both the DSAs and the platelets that create the DSAs. However, the studies have shown this to require a long term treatment of dialysis, as it doesn’t attack the source of the problem. My Dr. feels that this is unnecessary and too aggressive of an approach given that I’m 16 years out, and he’s just unimpressed with the results.
The second method is a direct attack with medication on the DSAs. This is effective, but only temporary as the platelets can simply recreate the DSAs over time.
The third method, and the most likely for me, is several infusions of the DSAs. Yes, the same DSAs that are the potential problem. What studies have shown, and the doctors don’t exactly know why, is that the high level of DSAs ‘shocks’ the immune system and causes it to seize all production of the DSAs. Tests are run a couple weeks after each treatment, and once the DSAs die off, the treatment is stopped.
And then, of course, there is the option to do nothing at all. With me being 16 years out, and the fact that these antibodies are only now showing up, they may just not be a big threat for my body. This is a huge gamble though, because if they are a threat, it can lead down a road of rejection and irreparable damage to my transplanted organs.
My primary transplant doctor is discussing things with the others to see what route is the best to take. One thing that was said at this checkup was a bit of a reality check: that there is a possibility that my intestines could simply be reaching the end of their life. Every transplanted organ receives some level of damage, whether it be just the act of transplantation, or rejection, or something else. This damage means that they may no-longer have the life expectancy we’d hope they would. I guess I just assumed this was more of a solution rather than just a temporary fix to buy more time in life.
It certainly puts the little things like my stressful 3hr drive this morning into the ‘less than unimportant’ bin.
Overall, I am doing well other than these random hospital visits, so for now I just wait to hear what the doctors think should be done and then go from there. If all continues to go well, we hope to get another 16 years out of these things, and many more.