Today I had an emotional day. Again! I recieved an email from my liver surgeon at U of M finally writting me back in reguards to some of my questions I have been running around my head since my scope on thursday revealed that I have no veins at risk of bleeding as of that day....Is that the coarse of the disease, come and go? Steve and I notice a trend and when they are gone and are in the past is when I am on 2 injections of blood thinner and NO working out or running, is this related? Will I have to be on blood thinners forever, that too has deadly consequences when talking about 40+ years? What if I stay the way I am, 2 shots, no working out, no running, zippo. Will it stay calm? Was the bleed I had from the veins in my throat or simply from being on blood thinners? We never did find the source.
He said that he has been thinking about my "plumbing" problem and here is his thoughts:
1. The Spleen shunt should work. but certainly not a given. If it does, then we could potentially wean off of anticoagulation over the next several years and be all set. (sounds great huh?) Me too. but then I have Cleveland clinic telling me that it has a 20% success rate long term if you look at it in 20 years. (not great)
2. TIPS (the procedure cleveland clinic suggests) is not a good idea. 2 reasons. One is that we are assuming you have a hypercoaguable state (clot easy and have a clotting problem) and the TIPS will require anti coagulation forever as long as you have it. Two, is that is not likely a long term solution
3. Doing nothing...Well I THINK we seem to see some progression of clot, here and there, but this in not totally clear. I THINK if we continued your blood thinner and did not try to reduce the portal hypertension then we should watch you closely with scopes every few months and CT's and ultrasounds at least every 6 months. If the veins in your throat continue or you have a bleed again or you start to have veins in your stomach...that would be a clear sign that more is needed and we cannot simply do nothing.
Choice 3 is not crazy. I cannot guarantee you that the spleen shunt will work. We need 100% karma if we are going to do this. All or nothing.
My liver surgeon at Cleveland said this:
You are correct in thinking there is no absolutely right answer in what to do. Medicine unfortunately is often still a matter of opinions.
The facts today are this:
1. We do not and will never know why this happened. What came first the chicken or the egg? The blood clot or the blood flow resistance....
2. We all can agree on one thing and that is that there simply stated is NO right answer.
3. Cleveland says TIPS shunt, U of M says spleen shunt. Both have the pluses and minuses, there is no long term history on either. As stated by one, generally patients who need a greater than 3 year plan favor surgical spleen shunts. Most patients with TIPS have liver disease and either die or need a liver transplant in a few years after getting their TIPS.
4. What I have will NEVER go away. Whatever we do will have lifelong maintenance, checkups, procedures, blood work, CT scans, and ultrasounds will forever be my life.
5. I am getting more confused and really don't know what to do....I feel like a lost sheep, no where to go, no where to run for shelter, left to decide. Isn't there someone else out there like me? Am I the only person in the whole world that has this problem? I actually have something that no one has ever dealt with and no one knows what to do about? HOW can this happen? and its happening to me!
We go for one more consult to Detroit on Thursday....I wonder what he is going to say. Am I nervous, excited, will I be more confused? One day at a time Lisa, one day at a time.....I am here today, the Lord has been with me and will continue to hold my hand, I CAN do this. I CAN do this.....Once again I battle with fear and want to run away and pretend this isn't happening, live in denial and just keep living the way I am, I want to cry out to the Lord and say that I don't know what to do. Maybe it will all go away....
Moving week. We must be out of our house by the end of the week. I am very excited and can't wait to live in our cute little farm house that we are renting. It is soo cute! I love it. I could honestly stay there...I have some country girl in me trust me, my dad may not believe me, but there is something about living away from it all. I can live with well water and look forward to seeing the majestic skylines with the sun falling just beyond the horizon of the 40+ acres....Peace, savoring life, my kids, my family and the Lord. One day at a time the Lord has a plan in this all!
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