BACK TO U OF M

I have a very serious, rare and complicated health problem. I have blood clots in my veins of my abdomen. Primarily located in my liver, portal vein, and superior messenteric vein. Like my Dr at U of M says "I have a plumbing problem". These clots are causing back pressure in my veins and not allowing the blood to flow freely therefore giving me high blood pressure within these veins (Portal Hypertension). This back pressure is causing problems. The blood can't get where it wants too and quickly as it wants too so it has decided to bypass these clots and create new veins, giving me large veins in my esophagus that could hemorrhage. My Gallbladder is affected, Spleen, liver, and intestines.....

Why do I have blot clots? No one seems to know. I had colon surgery 10 years ago, there is speculation that it came from that. I could have been born with this and it not developed until now. It could have happened during one of my pregnancies. We may never know. When you have Dr's arguing about the course of action to take, and place you in the middle, they say "you decide". YA RIGHT! Very nerve wracking!

I have my hematologists working at solving the "why" factor. Why do I have blood clots??? I have my liver surgeon working at "fixing" the problem. He doesn't have a clue why or what, he just knows or thinks he can find a way to fix me. I have my Gastrointestinal Dr. working on the problems that have been created due to this situation "wrapping my varices", so that I don't hemorrhage.

Then there is the question: Stay on blood thinners or not? Some say yes, some say no. Some speculate saying -she could bleed and hemorrhage from the veins in my esophagus and this could be life threatening and almost unstoppable if she is on blood thinners.- if she's not on blood thinners she could throw more clots and essentially cut off the blood supply to my liver and everything else. Hmmm...

My husband is so good at describing all the variables and ideas, and the thinking behind it all. I told him its a good thing I have him b/c I don't even understand it all. I sit in the appointments crying and he is my ears listening and being level headed. I thank the LORD that I have somewhat of a medical intelligence from my career. If I didn't! Oh my word, I would be so lost right now!!!! Even more so than I am!!!! Its a scary world out there in the medical land. Different Dr's have different opinions, they all talk lingo about you hoping you won't understand...thinking that I have no clue what is going on. And really, I am to the point that no one really knows what to do.....

So, I put my faith and trust in the Lord that he will guide all of my Dr's to find the answers and do what is best. I can't be the only person out in this world that has this problem! Most people with this problem have liver disease or failure. I don't. Most people are little kids, I am not.

So, its on to option 2. A procedure call "TIPS." They are going to attempt to place a shunt in my vein to bypass the clots and get the blood flowing. Will this last forever? No one knows. Most people that get tips have liver failure and die before they ever have to find out if the TIPS actually could last forever, they get it to buy them time. In my case, I don't have to worry about my liver b/c it isn't in failure and we all hope that I can live a long time. So will the shunt work and how long, or will it just clot off too?? All things no one knows. But I guess it is worth the try and see how it goes. If this isn't possible then it is surgery. What kind? There isn't even a name for it. He would create a surgery for me, create a new vein system, really never done on someone else. SCARY!

I am having problems sleeping these days. My mind is just a racing. So many things to think about. If anyone out there knows ANYONE or ANY dr. that would give me a second opinion or thought, please let me know. Otherwise its back to U of M in a week or two for our 2nd attempt.