Friday, February 16, 2018

1st GI consult

 In anticipation of my appointment with a gastroenterologist, I was feeling a bit anxious, as I have no idea what experience she has with this gene.  The idea in my head is that it doesn’t really matter how much she knows about it, she can still perform my EGD and follow the guidelines by doing a ton more biopsies.  She came very highly recommended by a couple people and they are confident if she doesn’t know about this she will advocate and research for me.

Well, Matt and I were very underwhelmed after meeting with her today.  She has never heard of this gene mutation and shows no interest in trying to figure it out with us.  She, like everybody else, was shocked that they are recommending a PTG and suggested getting a second opinion (which as you know from a previous post we have done).  This Dr is close to our house so I figured at least she could do my EGD so we wouldn’t have to travel as far.  But after meeting with her we just did not have a good feeling about it and decided to just make the drive for somebody who has actually had patients with this gene mutation.

Thursday, February 1, 2018

I’m going to tell my story, even if you didn’t ask to hear it

I feel this strong need to tell everybody my story. I somehow feel the more people know the more likely I will be to find somebody who can help me.  Just telling my story will help me emotionally and psychologically.  And I think it will help with finding the right healthcare team to care for me.  Most people in my life have been very supportive.  The reaction of shock has been very common for almost everybody I’ve talked to.  The shock is quickly followed by a ton of questions. Such as ‘how will you eat?’, ‘will you need a feeding tube?’, ‘should you get a second opinion?’, ‘do your kids need to be tested?’ And the list goes on and on. 

So, I will eat just like everybody else, through my mouth 😜.  But will have to eat slower, more frequent smaller meals. 

I might need a feeding tube depending on my surgeons preference to help prevent too much weight loss in the beginning.  

I have gotten many opinions as I’ve talked to a couple genetic counselors and several doctors and surgeons and their opinions are unanimous in that I should have a prophylactic total gastrectomy.  

My kids will need to be tested at some point when they are older.  My husband and I will talk to them as they get older to determine at what point we should test them. We both want them to be involved in this decision as much as possible when they are at an age they are able to be. 

I’ve also been trying to read as much as possible in research and guidelines so I know what questions to ask potential surgeons.  From my research I’ve learned I want to know a surgeons anastomosis leakage and stricture rates. And I want to know how long my roux limb will be.  And again, the list goes on and on.  And this is where my obsession starts to come in. I know I’m probably over the top with wanting to every little detail of the surgery, but this is my way of coping and feeling as if I have some sort of control in all of this.  I want to feel 100% comfortable with the surgical team I choose and being well informed is how I accomplish this.  

A Day in the Life - seahorse edition

I’ve gotten my eating and drinking routine down pretty good now. I have a really good grip on what helps me feel my best and what doesn’t. T...