CLEVELAND VISIT #1

Lets just say that the trip there didn't go that well. Steve was super crabby by the end, I found out quickly that my husband doesn't do well under stressful "driving" situations, or course don't say a word about it or as a passenger, you only make things MUCH worse. Its Mrs Tom toms fault you know! :)

I never knew that cleveland was that big. It is a huge city. We had beautiful weather and I unlike my husband was in great spirits thanking the Lord for the excitement of the journey and what lied ahead. The city line was shining and so beautiful. I was having a great time listening to mrs tom tom.

NOT so much by the time we reached our hotel, recommended by a local for being affordable and very Cleveland clinic assessable. Note to self, NEVER go to a foreign city without having your hotel reservation FIRST. Why I didn't do this is beyond me and totally not like my character but hey, I have had enough on my mind. "Sorry, we are full" She goes to get a manager. He magically finds ONE last suite available of coarse it is double the price of the other rooms but steve and I both knew that after a long ride, we just wanted it to be done. HAPPY VALENTINES DAY HONEY.

After a terrible nights sleep, noises coming everywhere, mind just a racing, not tired....I woke up to the sun rising on the city line and it was magical and breathtaking. I went into the other room, started some coffee, and got on my knees and spent some time with the Lord, thanking Him to the start of a new sunny day. Then came the jitters....

I don't know why I was so nervous. It was like I was going to a major interview, got all dressed up, didn't feel like eating, just anxious...What if I put too much hope in this guy, what if he's mean, what if he treats us just like were crazy, will he be the One? Will he be able to help me? Whats he going to say? I seriously felt nauseous. Never felt like that before.

Check in to the 10th floor, one of maybe 20 huge buildings of the cleveland clinic, one of our friends in the van even came from Egypt! Appointment 9:30 arrival, 9:50 with him. Fill out papers, see nurse, take vitals, go over history, and wait....over an hour in the room, no magazines, heart racing with anticipation, I am going to go crazy!! FINALLY in comes the man. He sits down and looks at me and smiles "sorry for the long wait but as you can see (as he points to my file with over 100pages I faxed to him) I have had ALOT to read and I wanted to go over your images you took with you today. You young lady are VERY interesting. (smiling). Tell me, what do you want to get from me today? We talk, and then he says "I do NOT suggest or agree with U of M's decision and I would NOT get the surgery proposed. It is too invasive and risky of a surgery and from my research it has a 90% failure rate if you look at it long term. There is a reason that I USED to do that surgery 30 years ago and do NOT do it today." (GULP!!!) I have looked at all your things, I agree with the workup you have had hematologically and you obviously do not having a clotting disease, I don't even think you SHOULD be on anticoagulants especially now that you have bled. The risk is too high and we haven't proven you even have a clotting problem. I believe there is something wrong with your liver, it hasn't revealed itself to us yet what it is, but maybe down the road it will, I believe you need to have the TIPS shunt and I am not sure why U of M didn't do that the first time." We talked some more, about the treatments weve had, procedures not done and done and why. I cry, (why can't I go thru any dr appointment without crying!!! I laugh at this now b/c reading all my discharge papers and notes from drs it always says on EVERY one "patient became emotional") We agreed, felt confident, and now we need to decide. He left with a smile saying "good luck, you are just the type of case I love working on b/c you are very complicated and it gives me a challenge". Its what clevelands all about, someone once said, "we all want to be horses, but someone has to be the zebra." I REALLY enjoyed him and I could have hugged him with the tears in my eyes.

So I have ALOT of different opinions on this subject of "fixing" me and many have valuable considerations that we need to weigh and think about. I am not going to get any more or I think I seriously would drive myself crazy. Of coarse when you are in there everything sounds so great and your so confident that you just want to say "sign me up" but then after sitting back and thinking about it more, you get more and more confused and then doubt starts setting in and you have questions you wished you would have asked sitting in there and now what?

This I know. This man WROTE the book on my disease. He has over 30 years of research behind his knowledge and KNOWS the facts. He didn't say "maybe, or I think" He said " I KNOW, DO NOT do this, You HAVE to have this, in my opinion" That my friends makes all the difference. This is the man that has done his work, specializes in me and what I have, he has done the surgeries and knows what does and doesn't work and its backed by research, years of research. This procedure that he is suggesting is alot less invasive and less down time and less risky, and I don't have to live without a spleen, I like all that! I have the confidence that he is right and I WILL do what he says. WHEN? WHERE? (steve and I have kinda lost alot of confidence locally and if insurance will pay for it at cleveland, why not go where they are the BEST.) Like he said and we both know, I am a very complicated case, this is not going to be the traditional approach they would normally take to put a TIPS shunt in, I have no right portal vein and that means it has to go in the left, we don't even know how to get in my liver b/c of all the clots, we need an EXPERT driving the ship.

What about followups? Management? How will I know if its failing? How will my blood be filtered if it is bypassing my liver? What if this doesn't work whats our back up plan? What what what.......... LORD, slow me down, give me peace, you opened this door and I am going to follow. You have a plan for my life, my days have already been numbered, and I can only decide how I chose to live each new day you give me. Please calm my fears of the unknown, the what if's, and help me place my confidence in You alone. You created me a special way, complicated in all, and you will NEVER hear me complain for I am fearfully and wonderfully made by you. Amen.

oh ya, and the trip home: VERY SMOOOOOTH. Thats b/c momma was at the wheel and dad was out like a light next to me. Home in just over 4 hours. I promise I wasn't speeding....;) My passion: anything with wheels on it for those of you that don't know me that well! :) As pastor Don would say, She was just a purrrrring.