Continued from my gastroparesis story…
I met with my GI specialist and had my horribly painful NJ tube removed. We finally agreed to have a tube put in surgically. Now I needed to meet my surgeon.
Surgeons are different from any other type of doctor I’ve met. Before I got sick I had a primary care and a gynecologist and had occasionally seen a dermatologist. Now I have a whole team of -oloigsts, and doctors from each specialty really seem to act differently, have different personality types. Maybe that’s just me, but I’ve noticed it pretty consistantly. Surgeons really seem to be more analytical, practical, and somewhat colder. No-nonsense. Don’t get me wrong, I respect and like my surgeon and would recommend him, but I think sometimes they lose a little bit of the human element. I met with him December 20, 2013. I definitely felt like he knew what he was doing, but he didn’t try to counsel me or give me any insight into life with a feeding tube. Considering that it really is a life changing surgery I do think some level of counseling should have been involved. He just explained the procedure and listed a number of truly frightening side effects – problems during surgery that would require them to do open abdominal surgery instead of the planned laproscopic procedcure, the tube migrating back into my stomach, bowel obstructions that would require emergency open abdominal surgery, the tube clogging, infections, the whole thing not being viable and having to have another surgery to put it in a different spot… I pushed for some sort of reassurance but didn’t get any. We set a date for early January, I went to my pre-op, all the while going back and forth on my decision, terrified of the surgery and of having to feed through a tube for the rest of my life. I couldn’t get basic questions answered like would I be able to go swimming? What was it like to live with a tube? The surgeon gave me a lot of worst case scenarios that terrified me. Everything on the internet was worst case – infections, rejections, tubes getting pulled out, surgeries going wrong, chronic pain or leaking, multiple surgeries to fix it. I was exhausted mentally and slowly starving to death. I went to my pre-op finally accepting the fact that I would have the surgery to save my life.
However, just when things seemed like they couldn’t get any worse, they did. I got a call two days before my surgery date telling me the surgery was cancelled and my surgeon wanted to see me. I can’t really explain the terror and frustration I was going through. There was no explanation. I placed frantic calls to every doctor involved. Finally I got an answer – my surgeon had decided my weight was too low to do the surgery safely. It was the second time I almost totally lost all hope. I hung in there and my wonderful father stepped in, made some calls, and took me to see me surgeon, who explained that he wouldn’t do the surgery, it was too dangerous with my current weight and severe malnutrition. Even though we were doing it to fix those problems. Even though none of my stats, including my weight, had changed since he had seen me and approved me for surgery two months ago. I started to become hysterical and lose faith in the doctors. So now they told me I had to have another NJ tube placed to help me gain weight and fix some of my malnutrition markers (electrolytes, etc) to avoid something called “refeeding syndrome” (more on that later) and make the surgery safer. He finally convinced my father and me and we were taken down to radiology to have another NJ tube placed. However, while we were waiting, I lost it. I was crying inconsolably and begging them not to do it. I couldn’t face that pain again. I was literally terrified just thinking about it. It’s things like this that show the difference between medical and patient perspectives. My surgeon saw it as “most people don’t have trouble with it, you should be able to do it with no problem, even if it hurts it’s a means to an end.” I saw it as screaming pain with no relief for an unspecified amount of time, something I’d endured twice before and had almost broken me. Doctors don’t see pain as a real symptom. I wanted them to see it as something that was unbearable to me, like having anaphylactic shock from a drug. The nurses and doctors were not happy with me, but my dad stepped in and helped. We agreed that I wouldn’t get another tube, but since I had to do something to be approved for the surgery, they had to put in a PICC line and feed me intravenously, directly into my aorta. Seemed like a better option to me, I could deal with a line in my arm, anything but the nasal tube. Even though I would have to have it in longer and they couldn’t tell me how long.
So began some of the worst months of my life.
Click here to read about my experience with my PICC line and TPN.