When does it finally become enough? When do you finally ask it all to stop and cry “uncle”? I’m at a place where I am asking those questions. Why? My feeding tube is loose again. As I write this I am fighting that strange sensation that comes with the displaced tube. I am fighting nausea, knowing vomiting is the worst thing I can possibly do in this situation. I emptied my stomach—which is every bit as gross as that implies, but the nausea is still there. It’s caused by the tube that enjoys wandering. I realized it was out of my intestine about one this afternoon. I think I actually knew earlier, but I couldn’t face the reality of what that meant. I found my courage and checked—I will spare you the details—and discovered the key factor that meant it was in my stomach again. I called the doctor and then played phone tag all afternoon. I spoke with one group who is unsure what to do—replace it again or move the site. In other words, cut me open and try again. Finally, the call came back from the provider and for some bizarre reason, they scheduled me for a simple x-ray. I suspect the nurse did not relay the bulk of my message again (see previous blog) and the doctor assumed I was just being overly sensitive. I know I am not. I know I am looking at getting another tube, or another site—or maybe another solution. The problem is, we are running out of solutions. I am at the point of questioning why I even allowed this in the first place. Sure, I was slowly starving, but maybe I could have figured something out. Yes, there were other reasons as well, but maybe I could have figured those out too. I trust my Gastroenterologist. I know he wouldn’t have recommended this step lightly. I know he could never have foreseen this mess. It’s just becoming too much. I feel like the patient in a hospital drama. No, scratch that, I feel like a character in a fanfic story where the poor characters have hurt piled on hurt until you wonder how they can possibly come out of it whole. I admit I’ve written a few of those over the years, and more than once they didn’t come out of it the same person they were going in. How can you be unchanged? I don’t know if I can face it again. I don’t know if I can live anything like a quality life with the shadow of a new feeding tube every week or so, which is what is happening right now. I am struggling with the quality of life versus the quantity life question right now. I’ve heard from, more than once, “If you were a dog, they’d put you down”. That is not comforting, especially when I know for a fact for most people that would be true. They would end the suffering of the poor animal that couldn’t eat, that was in continual pain, that was nauseous all the time, that couldn’t star correctly hydrated. Where does that leave me? There is no cure for gastroparesis and esophageal spasm. There are “comfort” measures—like the amazing migrating tubes. Only they are not comforting. They are making me question my own decision making. They are making me ask myself “What is the life I want to live?” It’s a hard question. Where do I draw the line between living a quality life and living a longer life? Right now, though, all I want to do is cry uncle. I want to find the one writing this story in the comfort of their office or bedroom and tell them to stop. Let the hero rescue me, let me drive off into the sunset with hope and the music blaring. I know that is unrealistic, but sometimes it comforts me to think it could happen. Especially now. What do I do? I don’t know, this time I really don’t know.
6 Comments
Bonny
13/8/2013 13:24:37
We all have to find our own reasons to fight or not, and it's understandable that you are so, so tired of this. My heart truly aches for your suffering. I would totally get it if you said F THIS and checked out. However, for whatever bizarre reason, sometimes things can get better when we don't expect them to also. A different doc or facility might offer a different approach to the placements, but I also know its hard to even look when you are not well. I'm praying for you, to get whatever you need for some peace. Perhaps it will come in the form of a different set of eyes looking at your case.
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Muffy
13/8/2013 16:07:41
Thank you so much. I know thinks will look up, at least I hope so. This is turning into less of a solution and more of a nightmare. I am hoping that my doc can consult with the IVR doc and find a solution that won't end with a bad situation like the last attempt at a solution. Knowing people are out there holding me up keeps me here. Sometimes I dispair, I just need to remember the beauty in the world and people like you.
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Margaret
13/8/2013 20:59:45
Ah, Muffy. Wish I could help you through this. I can't understand why your tube would migrate so often. Is it not long enough or not placed in the optimum spot? Don't give up yet. Call up your inner Fenfyr and hang in there. It's not easy having a tube, with all the things that can go wrong, but it can save your life. Hoping things change around for you quickly.
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Muffy
18/8/2013 06:41:35
I am not sure why it migrates. I am trying to be brave through this all, but it is getting hard. I am going to conquer it, but maybe all of this is pointing to a need to move a different direction. <3
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Cathy
14/8/2013 10:10:20
I am so sorry you are going through this. Maybe you should talk to your gastro guy because you said you trusted him. Maybe he could help you figure it out. You are such an awesome person. I have been following you for awhile. I promise I will be praying for you to feel better. There may not be a cure for it yet, but don't give up hope. Amazing things are happening in medicine. The cure may be around the corner.
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Muffy
18/8/2013 06:43:59
We are going to have a long talk tomorrow. I have reached a decision. I actually had something bad happen again, which I will chronicle in my next post. But I have decided, and I think it is a path towards life.
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Muffy MorriganMultum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days. Archives
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