LIVING BY FAITH

So, I have diagnosed myself. I know that I have Budd Chiari syndrome, affecting one in 100,000. I just spoke to my cousin, who is a Dr. at the Cleveland Clinic in Ohio, and that is also the first thing he asked. No one so far has told me that I have it, but I just called 2 physicians and am awaiting their reply. The only thing doubting my mind, is why haven't they said that if it such a common disease involving blood clots, wouldn't they know that by now?

I spoke with my liver surgeon the day after getting home from U of M. He told me "lets sit back and do nothing, go on your vacation, and we will see how it goes." Then after alittle while he called me back and said to expect a call from the radiologist b/c my surgeon wants to put that shunt in, the whole original plan. My Radiologist told Steve and I that he did NOT want to put a shunt in and that after my procedure on Monday he would be seeing me before the 11th b/c he needed to get those clots outta there, like he did 6 months ago, b/c they are so bad. I also called my Gastroenterolgist and he said to do nothing. What?????

I talked to Steve and he said no way. So I called my surgeon back and asked him if he even talked to my radiologist b/c according to him, I would be back there within a week. He had NOT talked to him, he "tried". I basically started crying and told him "look, you need to figure this out. Think about me! These clots are not going to go away by themselves just like they didn't last time. We took them out! If these clots are so severe like the radiologist said, then think about the pressure they are placing on my veins in my throat, I could hemorrhage anytime, and basically am a ticking time bomb. He said I am a ticking time bomb either way. Then I said "You need to talk to my Radiologist and figure out what you guys are going to do!" His reply, I will try but he is busy, unlike me (haha he actually laughed). I told him "if he's not that busy then I will give you something to be busy about, figure out what is wrong with me and figure out what we are going to do about it!"
He then told me "well quit being so complicated." (haha again.)

I had enough that day. Sometimes you just need to be persistant I am learning b/c if I am not, I will never get anywhere. I am just a number there at U of M. I am not a person with a family, a wife, friend, mother.....
They don't care. Like Steve and I both said, you just get so sick of it, that you start becoming numb and not caring. Throw up your arms and say to yourself, Who cares? They don't, and I am starting to not either. Thank the Lord I am in the medical field myself b/c I can only imagine what would have happened to me already! I cannot imagine what people that don't have any clue have happen to them. The medical world makes mistakes, and they would have done plenty on me already if I hadn't known enough. It is soooo scary to think about and like I said, Thank God, I know enough not to just go with the flow and do whatever these Dr's say.

So what are we going to do? No one knows. No one has said. My surgeon called again and told me to expect a call from my radiologist b/c he wants to take the clots out. Great! That is what I want too. After reading up on it, and learning, I do NOT want a TIPS shunt like I was supposed to get on monday. The Dr's all have their own opinion and I see the facts behind their view, but I just don't know which one is right. THEY don't know.....

I am thinking about getting a second opinion. As for now, like my title says, I am living by faith. Scared? Not really. Nervous, worried? Not really anymore. I started not caring. Maybe that is all the prayers working on my heart. The Lord has my life in his hand, he has a plan and path for me, and ultimately HE knows what will happen. If, my time ends, I know I am going to be with Him. He has my life, He is my only strength and comfort in life, and I feel his arms around me. A peace has overcome me.....Thank you Lord.