A few weeks ago I went in for a routine visit at my transplant clinic. Sitting in on my appointment was a doctor from another hospital who was being represented as the "Nissen Expert".
For those of you who don't know, a Nissen Fundoplication is a stomach surgery done to prevent any stomach acid from coming into the esophagus. This is a laproscopic procedure that is often done for people with debilitating acid reflux. In my case, and the case of many other lung transplant patients, this procedure is being performed as a possible way to stop stomach acid from going into the lungs and, thereby, hopefully reducing the chances of getting chronic rejection. Some docs swear by it and some docs think it's a gimmick--the opinions range on if it has been proven effective for delaying or preventing chronic rejection.
I was hesitant to get this procedure done, partly because it was experimental and partly because I already had a crummy stomach to begin with. As it turns out, my instincts were right, unfortunately, and I have many regrets about getting this surgery. I have many more stomach problems, some of them really impacting my daily life.
OK. Now back to the "Nissen Expert" sitting in on my clinic visit. I told the docs about my various complaints and we talked about how my symptoms were not getting much better, even now that I was 7 months post surgery.
The Nissen Expert chimed in and told me that what I was experiencing was better than possibly getting chronic rejection. Period. End. Statement.
Here is where doctors can miss the mark. No. That is not a statement of fact. In truth, it should have been a question, ie. "Does the fact that this might prevent chronic rejection outweigh the problems you are having?" I would have welcomed and appreciated this question but, instead, I tossed and turned that night (and other following nights) reliving that moment and getting more irritated the more I thought it over. I wish I had given him a much longer answer than my curt "no." The answer is a complicated one, and not the point of this post.
The point is, quality of life is a huge factor many professionals seem to discard. As long as the stats look good, as long as I can move around, as long as I don't die...it seems that this is all that they feel the need to consider. The reality is, there are many things I would rather die from instead of undergo the treatment. To live for the sake of living may not be worth it if the rest of the days are spent in pain or battling side-effects of the meds or procedures.
Don't get me wrong. I don't want chronic rejection. I've been there and it's no fun. That is the reason I ultimately chose to move forward--in the name of doing everything I could to preserve these lungs. That said, my side-effects really cramp my style.
Is it worth it if this procedure really does delay or prevent chronic rejection?
Is it worth it if this was an experimental surgery that turns out to not really make a difference in the onset of chronic rejection?
I think doctors need to understand that the nuances of living with illness are more subtle than they, as presumably healthy people, can understand. To the "Nissen Expert" I say; it may or may not be worth it--the jury is still out. Next time, please ask me the question instead of telling me how I should feel about my own sufferings.
As I write this, I feel what a tight line I am walking. On one hand, I am a patient who has benefited from some of the most extensive modern treatments known to man. On the other hand, I am a person who has faced death and understands that there are worse things.
I don't want to come across as ungrateful. I do want to assert my rights as a person, a person who is more than a patient.
In many ways, it feels as though I owe my team my life. Shouldn't I do whatever they want--they've gotten me this far? At the same time, I didn't live through transplant to suffer with unnecessary problems!
It's all a delicate balance. One I struggle with whenever things like this arise.
I guess the bottom line is what I always come back to: I have to educate and advocate for myself. Simultaneously, I will continue to ask docs to consider my perspective more closely before making assumptions or characterizations.
Is that fair?