Monday, December 16, 2013

Today's update

I met with the transplant surgeon today to discuss a gastric pacemaker. I took notes so I'm going to just copy those. More train of thought than cohesive story, but you'll live. :-)

He said that the pacer won't improve my gastric emptying. It usually helps people with intractable vomiting but thats about it. He thinks I'm a high risk patient for the surgery and that the possible benefits are far outweighed by the risk of coplications. I guess because I've had previous abdominal surgery. I've already had a mini trial as to the success when I was on the domperidone. That helped with my gastric emptying but not the nausea and vomiting. The pacer would do the same thing as the domperidone - make my stomach move - and since the med didnt really help, he doesn't think the pacer would. He said that he is a very conservative surgeon and that he was sure I could find someone to give me a pacer, but his opinion is that I wouldn't benefit from it. I told him my goal was not to get a pacer but to find a solution and/or options to make me feel better. If a pacer isn't the answer, I'm not going to go running around to find someone who will tell me what I want to hear.

He did say that he thinks the gastroparesis is a red herring and he believes that my nausea is probably caused by something else. He just doesn't know what.

He was very impressed that I was looking at every option possible and was proud that I have taken the initiative to control my own medical care. If he only knew, eh?

He did give me the name of someone in Louisville who basically  invented the pacer surgery. This dr is now doing a noninvasive temporary pacer that he places endoscopically. If patients respond to that, it's likely that they would benefit from the permanent pacer. It's pretty low risk, so I'll probably investigate that path. It might be worth trying.

That's all for now. I'll post an update once I see the pain guys on Wed.

Where's the sun?

I am here in MN. It is cold.

I am seeing a transplant surgeon this afternoon to discuss a gastric pacemaker. Then on Wed I am seeing 2 doctors at the pain clinic. I'm really hoping that I can get some answers, or at least some new options to try to manage my pain, nausea and GI issues. I will update everyone at the end of the week. Keep praying!

Tuesday, December 10, 2013

Brrr!

I am going to MN on Sunday (12/15). It is -2 there right now. There are not enough layers in my giant wardrobe to protect against that.

I am seeing one of the transplant surgeons to discuss a cardiac pacer, but I don't think I'll end up going that route. We'll see. I'm also seeing the pain team there. They're good folks, so I hope they can do something. I'm pretty discouraged, though. I've come to realize there is nothing that can physically be done for me, so it's all up to my mental control. I'm not strong enough yet to overcome the (perceived) pain. Whether it's real or all in my head, it still hurts a lot. And I still have horrid nausea. Maybe the snow will freeze the puke out of me!

I have had my fill of tests. I had a gastric emptying study, which showed delayed emptying,  so they ordered an upper GI barium series to look for blockages. That showed a mass, so the dr ordered a CT scan to look into that. The mass was gone on the CT, but they found some irregularities on my liver, so ordered an ultrasound. That test just came back to say that they saw a growth on my liver, so now they want an MRI. Yeah, are you as dizzy as I am? I'm sure the liver stuff is due to my islet transplant, but my local doctors want to get an MRI so I'll indulge them a bit since they're also trying to figure out what's wrong with me.

And that's about it. I still feel lousy but trying to fake it since it's all in my head anyway. Now I just get to fake it in -2 weather. Brrr!