MAJOR DECISIONS

I pause before I begin this, not even sure where to begin....We had a consult on thursday and he gave lots of options (shunts, bypasses, venous reconstruction) all with negatives, some only last for a few years and need to be redone, some reclot and some don't work, some cause mental problems (I don't need to be any more crazy:) some might not even be possible b/c of all the clots I have inside. Unfortunately you are grey and there is no black and white with your case. We don't see this and we don't know why. Its not, oh, your Gallbladder is bad, it needs to come out. We don't know the answer. "Lets see what U of M has to say."

Wake up at 5am to head to U of M. I am sooo tired, so anxious, all I could do was pray the whole way. In a way, I was hoping they would admit me right then and there and just do something! I even had a bag packed in case I wouldn't be coming home. Mike (a world reknown liver transplant surgeon and close to my age! isn't that insane!) walks in, we hug. Hes a great guy and I have TREMENDOUS respect for him.

He pulls up my CT, looks at the ultrasound, and says....Heres my thoughts. I consider myself a Dr that doesn't jump right into surgery and tries alternative approaches first. When you came to me 2 years ago, we didn't know what the problem was and we tried cleaning the clot out, put you on blood thinners, and hoped for the best. That didn't work. The fact that you reclotted on blood thinners tells me something else is going on. We need to do something different, something more permanent, you have a "plumbing problem". Your blood system is like a pond, not a river. When you have a pond, things eventually start to grow in it and get all gungky. If it were a river, you wouldn't have that b/c things would keep moving.

I want to take your spleen out, connect the splenic vein to the renal vein (kidney) and create a shunt to bypass the new clot and relieve the internal pressure. I think this will cure you. I don't think you have a blood disorder, you have a flow problem. Why? We don't know....Maybe from pregnancy, maybe from your colon removal surgery (I had when I was 20). IF we do, it might reclot we don't know, I would keep you on blood thinners for maybe 2 years and if nothing, hopefully we can take you off them. The fact that your on that much blood thinner for the next 50 years potentially, your gonna have something happen just from that, I would like to get you off them. If it clots, we have taken away alot of options for future surgeries and procedures b/c then most of your veins are gone. You need an echo on your heart to make sure you can handle the surgery, immunizations for infections that people without spleens cannot fight, CT's to map your vessels, another ultrasound, we would cut you open from top to bottom, the surgery would take at least 6 hours and you would be in intensive care for at least 2 nights and in the hospital for 1 week. For 6-8 weeks after you cannot drive, you cannot work, you cannot be super mom. If you ever have a fever of 100 you need to go to the ER every time for life. Infections are the problem and what kills patients without spleens b/c they cannot fight them.

I am probably the only Dr in all of the midwest that does these types of surgeries. I found out that IS true, no one does it in michigan thats for sure.
He left the room and gave us time to think about what he said.

Steve and I just stared at each other....Me crying of coarse. We didn't even know what to say. In a way I was relieved to know that this could be the fix for life!! No blood thinners, I could actually be done with this all! Oh my word, I can't even begin to tell you how amazing that would be. But the big thing is his words "I THINK". If it didn't work, we would be screwed.

We left, not agreeing to anything, and told him that yes, we agree he is probably right, but we don't want to be "80%" sure, we don't want to know we are guessing. I called the Dr's from Thursdays meeting and he told me that if it were him and his wife, he would get a second opinion. Head to Cleveland, Mayo, Chicago, wherever that BEST vascular surgeon is and find him. If he agrees, then we know that we have 2 TOP brains thinking on the same page and we do it. BUT he also said, be prepared for a totally different opinion and then you are even more confused. Where do we go? He is going to help me find that 2nd opinion and asap steve and I will be heading there.

I went to bed last night at 8:30! Slept till 8:30am! Ya, mental R&R. I feel better today, I have millions of thoughts running through my head, don't know what to think or feel really.....My only comfort is knowing that the Lord has a plan. He is with me, He doesn't want to see me like this, He is going to help me get through it and give me the strength and help carry me, and I know that I will see Him if I am to leave this world.