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Just to share...the story angers me
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One of the things I have noticed, even more so in the sleeve communities rather than the RNY communities, is that sometimes people don't want to hear about complications. Sometimes I feel so angry, though, that I just want or need to share.
Everyone told me I had a great doctor, and perhaps he was if there were no complications. Who knows.
First as I waited for surgery they got a call that he had a personal problem and would be late, until the afternoon rather than morning. Right then I wanted to go home and reschedule, but the nurse said he was the utmost professional and would surely not come in if he wasn't fully ready to do a surgery. I should have gone with my gut!
First, I woke up in surgery. I realize this isn't the surgeons fault...it is the anesthesiologist, and it can happen. It didn't last long, but the pain was beyond anything I can ever describe. I heard the anesthesiologist, I assume it was, apologizing to the doctor, and then I was back out.
I woke up in recovery and was there for hours and hours, long after it normally "closed." I was in extreme pain and even their best drugs weren't cutting it, and as a result my blood pressure was through the roof. Finally, after five or six hours, and tons of blood pressure meds, I was moved to my room.
I conveyed repeatedly that the pain I had wasn't normal. No one listened, and I felt quite patronized. I was told over and over again that it was just gas. Finally a swallow test showed that my stomach was swollen shut. Doctor kept pushing me to drink, as the smallest trickle would go through. It would take hours to finish an ounce. Then I was sent home! Why!
I kept a log, drank as much as I could, constantly neverendingly trying to sip and walk. I had severe esophageal spasms that were excruciating. I timed them. After a couple days I was back in the hospital. Stomach was worse than before. Severe dehydration and extreme pain. Got drugged out. Was in for another week on IV. Discussions began that the sleeve may have been made so small it wasn't ever going to function and I would need to have my stomach removed. In the interim, we were going to do PICC and TPN for several months.
Finally at home, I looked at all the meds and the nurse trying to train me on how to do the PICC steps, and I just started crying. Let's not forget that I told them in the hospital I was sure I had a UTI. They did a test and then sent me home. Days later I told my visiting nurse there had to be a problem, and I was sure I had a UTI. She looked into it and it turned out that I had tested positive. It the hospital and doctor screwed up and never gave me meds or it. Any least it explained the fever.
Months on PICC, chronic pain, finally reached the point where I could get 50 oz of Water in if i drank constantly in tiny sips. PICC removed. Did I mention no weight loss as PICC was high calorie to help the body heal? So months of misery and no weight loss. Mind you, this is a short paragraph but represents months of absolute hell. I was also working full time and had three kids at home.
Doctor told me to try and drink Protein shakes and ignore my NUT as my stomach couldn't handle anything she was telling me to do. He told me just to get in my water and he didn't care about the rest.
Along the way, let's start with the maladaptive eating I developed...consuming liquid calories because everything hurt and by this time I was clinically depressed and didn't give a crap anymore if I ever lost a pound. I was not in a good mental place.
You are not suppose to drink with food, but my stomach developed such tremendously loud digestive noises that they could be heard 20 feet away every time I ate anything. The only way to get them to go away Is to stop eating a half hour before I see people and spend the whole half hour purposefully flushing the food out of my stomach with tons of water.
My hunger never went away, by the way, except when I was healing. So, I gave up on thinking I would feel full. Even if I drank no liquids, I was starving an hour later. I just accepted I would be hungry and learned to deal with it.
It is a year and a half later. I have enveloped such severe reflux that I aspirated acid every night even while sitting up. I stopped seeing my original doctor as he was awful, and moved on to care with a gastroenterologist who does NOT specialize in weight loss surgery. Upper GI showed severe stomach inflammation, changes in my esophagus, a nodule in the stomach wall, and a H Pylori infection. He seemed somewhat surprised my last doctor never checked for these things considering all the complications I was having.
So, why am I so angry? I realize complications can happen. None of us want to be that 1 percent, but some of us will and unfortunately I was in that group. I can live with this as I chose to take that risk. I am so angry because I felt a real sense in getting care that I was being patronized, told to wait and see if a problem went away instead of getting proper treatment, grated as if I was just crazy when everything I said was a problem turned out to have a definite reason. I feel it is a kind of unrecognized bias toward heavy and WLS patients.
So a year and a half later I am still suffering, but my gastro believes that the h pylori treatment will really help a lot of the things that have plagued me for the last year.
The problem is I have been left with a deep distrust of doctors. There were talks that I might need another surgery to correct the reflux, since my esophagus is developing abnormal cells that can lead to cancer. I think I may need to see a therapist for PTSD from all of this, but I'm pretty nonsensical about ever having another surgery....no way in heck. So we will treat the symptoms but I'm not going under the knife again short of death.
Sorry for the really long rant and rave. I just felt the need to share.
Take care all.