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Diane Detmer
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Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
To Wrap or Not to Wrap
Bill Detmer
Bill Detmer
I struggled with the doctor’s recommendation to undergo the Nissan Wrap procedure. I had no obvious symptoms of reflux and was concerned about the repercussions of the surgery. As a result of my transplant, I have gastro-paresis, a condition where my stomach does not digest food at a normal rate. The potential for complications with the “wrap” seemed insurmountable. I researched alternatives, discussed the procedure with several people who had undergone it and read Dr. Palmer’s medical articles about the correlation between aspiration and chronic rejection. I also researched as much information on the topic as I could find. Still, I was not convinced. I asked for another pH Probe test post-transplant just to see if anything had changed; hoping I would not have to endure yet another surgical procedure.
I was convinced to go ahead with the procedure when Dr. Palmer told me that my pH Probe test results were some of the worst he had ever seen. While I had no noticeable symptoms of reflux, when I reclined I was actually experiencing acid in my lower esophagus more than 50% of the time and it was all the way up to my throat almost 25% of the time. Even though Dr. Marroquin still painted a bleak picture of potential problems, we agreed that the risk of complications, and it was only a risk, not a surety, outweighed the correlation data that Dr. Palmer provided regarding reflux/aspiration and rejection. While Dr. Palmer’s findings are not proven facts, the idea of sacrificing my new lungs to chronic rejection simply did not compare to the potential risks of the Nissen procedure.
Dr. Marroquin also recommended having a Pyloraplasty at the same time as the Nissen wrap. He wanted to go in and enlarge the opening between my stomach and bowels so that my stomach will empty more readily. Without that procedure, Dr. Marriquin felt that I might be a candidate for “Gastric Bloat Syndrome”, a condition where gas builds up but cannot be released. The problem with that is it required a traditional “open you up” surgery whereas the Nissen could be performed laproscopically. I opted to skip the Pyloraplasty and take my chances with the wrap only. I felt that if there were problems with Gastric Bloat, we could deal with that afterwards. No need looking for additional problems.
The surgery itself was relatively uneventful. I was in the hospital for about a week after the surgery because of concerns for my kidneys and other ongoing problems. I did very well overall but did develop pneumonia a week after going home and had to return to the hospital. That wasn’t normal either.
For me the post-operative requirements were difficult. With my CF digestive tract, I need an abnormally large number of calories per day in order to maintain my weight. The high calorie need complicated meal planning after the surgery. Because of the potential for developing Gas Bloat Syndrome I was required to have only liquid or pureed for four weeks after the surgery. The usual time for pureed food after the surgery is two weeks. The pureed food diet was very difficult for me. My wife, Diane, worked hard to add more seasoning to the food to make it more tolerable. I had to supplement that with several high calorie nutritional drinks every day to meet my caloric requirements. Nevertheless, the way I approached it was that it was only for a limited time. I kept my eyes on that light at the end of the tunnel. As I approached the end of my fours weeks, the pureed food became less and less tolerable. So did the high calorie drink supplements. But, I did make it.
I found and heard from others that it is very important to stick to the pureed food for the full two weeks and then slowly introduce small amounts of solid food over the next two weeks. Eating too much can cause nausea. When Dr. Marroquin instructs us to eat slowly and to eat small amounts of food, he means it. It is important. Food can become stuck and it takes awhile for it to move down and it is uncomfortable. It took several months, but I gradually increased the amount of food I ate. Now I eat well again. I have had some problems with hiccups if I eat too much too fast. The gastropariesis is helped with medications. Thankfully, I didn’t develop Gas Bloat Syndrome.
Overall, if it helps me keep my new lungs in good shape, I think it was worth it.
I was convinced to go ahead with the procedure when Dr. Palmer told me that my pH Probe test results were some of the worst he had ever seen. While I had no noticeable symptoms of reflux, when I reclined I was actually experiencing acid in my lower esophagus more than 50% of the time and it was all the way up to my throat almost 25% of the time. Even though Dr. Marroquin still painted a bleak picture of potential problems, we agreed that the risk of complications, and it was only a risk, not a surety, outweighed the correlation data that Dr. Palmer provided regarding reflux/aspiration and rejection. While Dr. Palmer’s findings are not proven facts, the idea of sacrificing my new lungs to chronic rejection simply did not compare to the potential risks of the Nissen procedure.
Dr. Marroquin also recommended having a Pyloraplasty at the same time as the Nissen wrap. He wanted to go in and enlarge the opening between my stomach and bowels so that my stomach will empty more readily. Without that procedure, Dr. Marriquin felt that I might be a candidate for “Gastric Bloat Syndrome”, a condition where gas builds up but cannot be released. The problem with that is it required a traditional “open you up” surgery whereas the Nissen could be performed laproscopically. I opted to skip the Pyloraplasty and take my chances with the wrap only. I felt that if there were problems with Gastric Bloat, we could deal with that afterwards. No need looking for additional problems.
The surgery itself was relatively uneventful. I was in the hospital for about a week after the surgery because of concerns for my kidneys and other ongoing problems. I did very well overall but did develop pneumonia a week after going home and had to return to the hospital. That wasn’t normal either.
For me the post-operative requirements were difficult. With my CF digestive tract, I need an abnormally large number of calories per day in order to maintain my weight. The high calorie need complicated meal planning after the surgery. Because of the potential for developing Gas Bloat Syndrome I was required to have only liquid or pureed for four weeks after the surgery. The usual time for pureed food after the surgery is two weeks. The pureed food diet was very difficult for me. My wife, Diane, worked hard to add more seasoning to the food to make it more tolerable. I had to supplement that with several high calorie nutritional drinks every day to meet my caloric requirements. Nevertheless, the way I approached it was that it was only for a limited time. I kept my eyes on that light at the end of the tunnel. As I approached the end of my fours weeks, the pureed food became less and less tolerable. So did the high calorie drink supplements. But, I did make it.
I found and heard from others that it is very important to stick to the pureed food for the full two weeks and then slowly introduce small amounts of solid food over the next two weeks. Eating too much can cause nausea. When Dr. Marroquin instructs us to eat slowly and to eat small amounts of food, he means it. It is important. Food can become stuck and it takes awhile for it to move down and it is uncomfortable. It took several months, but I gradually increased the amount of food I ate. Now I eat well again. I have had some problems with hiccups if I eat too much too fast. The gastropariesis is helped with medications. Thankfully, I didn’t develop Gas Bloat Syndrome.
Overall, if it helps me keep my new lungs in good shape, I think it was worth it.