I’m typing this from the hospital. I ended up in the emergency department on Sunday due to extreme abdominal pressure, bloating, and pain. The bloating, or pressure as I’m referring to it, was so severe I could feel it in my ears. There was also a burning in the back of my throat, but it was different than acid reflux. I hadn’t been able to eat in 5 days and was only able to take in little sips of water.
The ED doctor argued with me and told me she wasn’t going to admit me because I was clinically stable, yet she hadn't even ordered blood tests at that point. I asked to speak to a patient advocate who got the house manager involved, and suddenly blood tests and IV bags of fluid started happening. My potassium was very low, and there were several other indicators in my labs that showed I was dehydrated and anemic.
I was finally placed in a short stay unit, as I still cannot eat anything and can only do a few teaspoons of water at a time. Things with my hernia are changing quickly. Even a few months ago, I was eating a fairly normal diet. In March, after an endoscopy, I was told I had a medium sized hernia, then I was told my entire stomach is above my diaphragm. After another endoscopy this morning, I was told the hernia is well over 10cm, and that “about
half” of my stomach is in my chest cavity. I asked the doctors not to tell me anymore, because I don’t want to freak out about
the size of it.
I have had to be very pushy here to get this far, as I know something is seriously wrong because of how quickly I am deteriorating. The primary concern of the staff here is money/payment/insurance rules. The short stay unit is technically an outpatient unit, so they refused to call any surgeons or even GI to see me because they said they won’t get paid for it because I’m an outpatient. They won’t make me inpatient because they said there is no medical necessity to do so.
What really made me mad, is someone from the unit canceled my surgical consult that was scheduled for today, claiming if I go to an outpatient appointment, my stay here won’t be covered by insurance. This happened after I was told they were going to take me by wheelchair to my consult (which is just two floors down.) Instead, they showed up with a gurney and when I asked why I was going on a gurney they told me they rescheduled my consult for the end of August because they were taking me to an endoscopy instead and that the endoscopy takes precedence over the consult.
I completely freaked out, and demanded to know who canceled my consult and how they thought rescheduling it for a month from now was going to help me. The transport person actually interjected herseif and kept saying, “we just flipped the order, you’re just having the scope first.” Other staff kept saying, “your surgeon wants you to have this, he said you have to have the scope first before he will consult with you, he wants a complete picture when he sees you.” I finally agreed to the endoscopy because I thought they were telling the truth about
the surgeon wanting it.
After the meds from the endoscopy wore off, I called the house manager again. Shortly afterwards, the surgeon walked through my door. I can’t tell you how happy I was to see him. He was great. He said GPEH isn’t as rare as people think, and that GPEH runs in families. He said he has worked on hernias much larger than mine and does about
40 GPEH repairs per year. (I know he has written journal articles about
the condition and the repair process because I’ve read some of them.) He makes 4 or 5 small incisions, uses an absorbable material (not mesh) and relies on scar tissue to help keep the stomach in place. He does a full wrap but said he doesn’t wrap it too tightly. He doesn’t know if I will need esophageal lengthening and decides that once he’s in there. The whole thing from anesthesia to recovery room is expected to take 2.5-3 hours. He scheduled me for 3 days from now because he agrees things have gotten pretty bad for me and that I shouldn’t wait. He also said he does an endoscopy at the beginning of the procedure. I said that I thought that was why I had an endoscopy today, and he said he didn’t order an endoscopy for me. So, it seems I was lied to by the people that took me down for the scope.
I won’t say I’m happy to be having major, life altering surgery, but I am relieved it has finally been scheduled and that I will hopefully gain improved quality of life.