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!
Monday, February 28, 2011
Wednesday, February 23, 2011
I WILL PRAISE YOU IN THE STORM
I have had a great week! Oh ya, I have done my share of crying, but over all, I am getting better and better at talking about my storm without breaking down emotionally. I celebrated my birthday, my sons, lots of parties and had fun with family and friends, got to go to church, bible study all the things I LOVE to do.
34. What? Is that for real? Its true everyone, the older you get, the faster it goes. Just when you start realizing what true life is all about, finding yourself, accepting yourself flaws and all, loving the life the good Lord has given you, life goes faster and faster. Just doesn't seem fair. Guess that is why I tell my kids that quite a bit when they say "why?" Mom says b/c that's life, life isn't easy or always fair, you just have to do it.
At the great age of 34, I have had my share of storms. From a very young age I had terrible stomach pains leading to Colon surgery and removal, eye surgery, dead root canals never removed by my dentist, even though he said he did, killing 6 other teeth (ya, most of my teeth are now "fake" and I should have put that dentist out of business) diabetes when I was pregnant gave me a greater appreciate of eating the foods I love when I want to b/c it went away after Karlie was born. Karlie and I almost died together, she was physically shutting down after being stuck in the birth canal for over 3 hours of pushing and was resuscitated when she came out and taken to neonatal for 5 days while mom was placed on the "overflow" cancer floor the furthest rooms away from my daughter so every time I wanted to see her I had the pleasure of traveling across bumps and lobbies taking 15 minutes each time to get there. Then came Lukester, along with him came a broken back and separated pelvis, ripped abdomen muscles and I had the pleasure of leaving the hospital with my lovely granny walker leading to weeks of physical therapy. Not to mention the numerous infections and allergic reactions during that time. At one point, I remember crying in the bathroom wondering why the Lord was making me a Job (in the bible). Job was stripped of everything and had so many hardships in his life, way more than I ever experienced but haven't I had enough? Guess not.....because here I am today after experiencing much worse than all that listed above. Then I hear myself saying like I do to my kids, thats life, life isn't fair, you just have to do it. BUT I am now here to say that there is so much more to those storms of life and they all are part of HIS plan.
So this week I reflected on the Lord and my life and wondered, what is it that HE wants to accomplish? What does He want me to do? Where is this going to lead me? Why does he allow these storms? I can tell you that in many ways its the best thing that ever happened to me. I now have a LONGING in my heart to love and serve HIM more, to KNOW him, and get out of my comfort zone that I have been living in for way too long and try to venture out. This life isn't about me, its about HIM. I want to pour my heart out and show others what the love and grace of the Lord is all about and that they need to find that desire!! Not just live day in and day out, showing up to church, its so easy to stay in the comfort zone and say you know the Lord, but do you LIVE HIM???? I sure didn't. Once you do, you just want to scream it to the world. I am not sure where this will all lead, but it will go somewhere, I am not going to be still, and watch when I can do something. I keep singing in my head "use me Lord, use even me, little old Lisa"
I have learned many things through all of this:
1. First and foremost about the amazing Lord and His work in my life to make me who HE wants me to be. He has revealed himself in many ways and it has been amazing to look back and see his hand holding me and guiding me every step of the way. I could have never made it this far without HIM, without the many prayers being said on my behalf carrying me thru these times. He could strike me down just like any of us at any moment and yet He has still kept me here, by Grace he has saved me. Time is a wonderful thing b/c you can reflect on His amazing goodness to you, you can see HIS plan even when at the time you couldn't.
2. I have learned like my friend has said, there is a season for all things. This is my time to be a receiver she said, something I have never been very good at b/c I want to do it, I think I can do it all, and it has definitely humbled me and made me realize that I can't. Moms can't do it all, we need to rely and reach out to others and not feel bad about it! For goodness sake, we put too much pressure on ourselves! I am learning to reach out to others and I will be there for them in return. We are to act like Christians and not just say we are, be the hands and feet of Christ, help those in need, do something, not just say it, don't be afraid.
3. Some friends and family shine through and some don't and you quickly realize who cares and who doesn't. Like I have said before, this is hard for me. The true colors of individuals come through, and its hard to not let that affect me. This is where I have to pray hard.... Be the better person and don't turn my back on them when they need something. Pray not to become bitter. Do unto others as you would have had them do unto you. Repeat.... :)
4. Dr's.....hmmmmm where do I begin. It is VERY hard to find a Dr that is sincere and truly cares today, but I will say that it is possible. I have had many great ones, and many not so great. We live in a very different world today and Dr's have lost that humanity, personal touch, compassion that I feel every patient wishes they had. To treat them as they would their own mother, father, daughter....I think about one that said "I just don't understand why you would want a second opinion." U of M told you what to do, and I don't know what else you are looking for." Would he say that to his wife? Ooops, we did what U of M said and 2o years down the road we realize that was a mistake? Or another one that said "we could have a hayday with you if you really wanted us too doing all sorts of surgeries and procedures on you". Really? I don't even want to comment on that one. Another one said "are we doing this just as a favor on the side as a friend or is there a real request from a physician?" only after I said that it was official and he would be paid would he continue. Friend? He considers me a friend? ONE dr is supposed to make the decision on major life decisions? NO. I am here to tell you that Dr's are human, Dr's are sinners, Dr's make mistakes and I know they cannot know everything but then admit it and help us go to the one that does! Don't just leave us in the dark to be our own advocate and figure it out on our own. Take the time to look into my case, I realize its complicated and that it means that you have to spend more "time" than you probably care too on one patient but PLEASE we are talking about lives here! There is absolutely NOOOOO communication between physicians, they assume someone else is taking care of you, or basically "let it (me) be someone else's problem"
For those of you that have family friends, even yourself, if something doesn't feel right, or you just have doubts or questions....dont just settle with the one. Easier said than done, look at me, I would have signed right up with U of M if it weren't for my husband but thank the Lord I didn't. I just am so sick of not knowing what to do that I just want to do something!!! Keep going, fight, find another opinion, find another dr. There are a million of them out there and they all get paid, keep going till you ALL agree and feel confident with what is at hand. Don't always put soo much trust in just one. I work in the medical field people, I see mistakes happen all the time, its a fact of life, I realize there is no guarentee with any surgery or procedure but that is why YOU have to be confident with the Dr taking care of you. There are some that shouldn't be out there. I could keep on going but all I can say and plead with you reading is, don't always go with the flow and do what they say, especially if it doesn't seem right to you!
Tomorrow I get my veins in my throat wrapped again. This is what landed me in the hospital last time so I am alittle nervous but I now feel more prepared. I am going to beg him to leave them alone if he can....maybe they won't look so bad, thats my prayer today. Karlie and Luke, mom loves you and I will be ok.
And yes, we are going to get another opinion. I know I said I was done, but again my husband is keeping me grounded and we still do not have 2 dr's agreeing on anything. U of M states they are right, Cleveland says they are. They BOTH have very legitimate defenses and it is hard to decide. I am the one that has to decide. WHO do I trust the most? So we go to Henry ford hospital in Detroit for a tiebreaker. 2 out of 3, one will win. I pray that he doesn't throw a different opinion out there!!! Oh my word, I don't know what I am going to do then!!!! I am scheduled for the TIPS shunt in my liver on the 18th of March, will it stay on the books? Next Thursday will reveal. I could talk to you about the differences in the surgeries at hand and what the defenses are but it is pretty complicated to understand and I think you would think its boring. To me, it is soo interesting, the body is mind boggling, complicated, and amazingly made by the Lord. He has a PLAN, I just pray it reveals itself to me as we get closer to deciding.
Wednesday, February 16, 2011
WHY SO EMOTIONAL
Today I worked and I think I cried on 3 different occasions at work, and then all the way home. Sometimes I think I just can't take it and I feel like I am losing my ground, my faith, my confidence in myself that I CAN do this.....It just never seems to end. I try to be so strong and trust me, there are days that I obviously am not. And I don't even have it that bad!!! I could have cancer or some disease that there is nothing they can do about. There are patients in the hospital right now laying in those awesome beds (kiding!!! try it for 7 days, even just one!), getting blood transfusions, having surgery, radiation, spending hours thru chemo treatments, dying or crying b/c of pain and here I am just plain old crying having a hard day and feeling sorry for myself and scared that I can't do it. Lisa Marie, you could be so much worse please look at the positive in this!!!! Lord, can you help me with this one right now????
I have made the decision, the Lord opened the door for me at Cleveland clinic and brought me to the best dr I could ever ask for, praise the Lord! In that I do rejoice b/c I know HIS hand was in that all. If it weren't for my husband and the Lord, I would be at the U of M having major bypass surgery and have my spleen gone too but HE has prevented that, that whole thought just chills me. I look back and ya, I was ready to sign up, lets get this done, it sounded great, but I think I am just growing so weary that I throw my hands up and say, Lord, please end this b/c I don't know if I can take anymore. You hear the words "I think this might be the thing to do" and you honestly don't care you just want to do something. No one else around here is.
I called Cleveland today and insurance and I am ready to go. I asked the surgeon if I was YOUR daughter, what would you do? He said, I would do exactly what I am telling you to do. After studying your case some more in depth after meeting you, we cannot sit back and wait, we MUST do this or you WILL bleed again, you will clot again, things will keep getting worse. He even had another surgeon that will be doing the procedure already call me today and if we can do all the talking over the phone before the procedure we are going to try. He leaves tomorrow for Bangladesh for surgical procedures needed there but wanted to talk to me first and let me know that he will be away for a week, but He will work with Dr. henderson to develop the plan. We are aiming for the beginning of march. Better tell my husband right? He's so sick that he went to bed the second I walked in the door. Please Lord, prevent mom from getting this nasty flu or whatever it is that has stricken our whole family.
I am confident in this decision and I know its the right one. I am not going to go anywhere else for another opinion, I have my answer, and I place my faith in the Lord to carry out the plan.
So....Tomorrow is a new day. For the next few days I am going to pretend that nothing is wrong with me, we all know I am mental :) but at least nothing wrong physically and that nothing is going on inside of me. I am going to focus on my family, friends, spend time with my sisters, my beautiful kids, celebrate my birthday and also my sons!!! I am going to spend time with the Lord with no other thoughts racing thru my head. I am going to sit back, take a deep breathe and enjoy. I am going to be the wife, mother, daughter, sister, and friend that the Lord made me to be, I am going to celebrate my life and have fun. I am going to smile, joke and just be "me'.
I need it. I just need a few days in which I am not going to think about it, research the surgery taking place, or talk about it.....I just need to refocus and gain some confidence in myself back that I am ready, that the Lord is going to help me to the end and I cannot stop now.....
But just for a few days, I'm gonna just be ME. Oh that will be such a great feeling....I can't wait.
I have made the decision, the Lord opened the door for me at Cleveland clinic and brought me to the best dr I could ever ask for, praise the Lord! In that I do rejoice b/c I know HIS hand was in that all. If it weren't for my husband and the Lord, I would be at the U of M having major bypass surgery and have my spleen gone too but HE has prevented that, that whole thought just chills me. I look back and ya, I was ready to sign up, lets get this done, it sounded great, but I think I am just growing so weary that I throw my hands up and say, Lord, please end this b/c I don't know if I can take anymore. You hear the words "I think this might be the thing to do" and you honestly don't care you just want to do something. No one else around here is.
I called Cleveland today and insurance and I am ready to go. I asked the surgeon if I was YOUR daughter, what would you do? He said, I would do exactly what I am telling you to do. After studying your case some more in depth after meeting you, we cannot sit back and wait, we MUST do this or you WILL bleed again, you will clot again, things will keep getting worse. He even had another surgeon that will be doing the procedure already call me today and if we can do all the talking over the phone before the procedure we are going to try. He leaves tomorrow for Bangladesh for surgical procedures needed there but wanted to talk to me first and let me know that he will be away for a week, but He will work with Dr. henderson to develop the plan. We are aiming for the beginning of march. Better tell my husband right? He's so sick that he went to bed the second I walked in the door. Please Lord, prevent mom from getting this nasty flu or whatever it is that has stricken our whole family.
I am confident in this decision and I know its the right one. I am not going to go anywhere else for another opinion, I have my answer, and I place my faith in the Lord to carry out the plan.
So....Tomorrow is a new day. For the next few days I am going to pretend that nothing is wrong with me, we all know I am mental :) but at least nothing wrong physically and that nothing is going on inside of me. I am going to focus on my family, friends, spend time with my sisters, my beautiful kids, celebrate my birthday and also my sons!!! I am going to spend time with the Lord with no other thoughts racing thru my head. I am going to sit back, take a deep breathe and enjoy. I am going to be the wife, mother, daughter, sister, and friend that the Lord made me to be, I am going to celebrate my life and have fun. I am going to smile, joke and just be "me'.
I need it. I just need a few days in which I am not going to think about it, research the surgery taking place, or talk about it.....I just need to refocus and gain some confidence in myself back that I am ready, that the Lord is going to help me to the end and I cannot stop now.....
But just for a few days, I'm gonna just be ME. Oh that will be such a great feeling....I can't wait.
Tuesday, February 15, 2011
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.
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.
Sunday, February 13, 2011
HOPE, Following God's Lead
I look at myself today, and I CANNOT believe that I am the same person that I was 2 weeks ago. I guess in many ways I'm not. This disease has completely changed my life in every way, but so has every little bump, let down, disappointment, and even the days of joy. LIFE, you can say, has had a whole new meaning and the Lord has used each little phase of this to change me, mold me, and yes, Shape me into who he wants Lisa to be. Have I enjoyed it? At the time its happening I have great struggle I will admit, it is definitely the hardest thing I have ever gone thru in my entire life I hope, but if this is how HE wanted to change me into what He wants me to be, then I accept this struggle. I accept the hardships in life and face them with confidence knowing that HE is using it to HIS plan and HIS purpose.
This week was a great week. I look around my house and its almost empty...If you haven't heard, the Lord decided to send that "right" buyer our way a few weeks ago and we have to be out by the end of the month. PERFECT timing....ya right! Then a friend of mine said, maybe it was perfect timing b/c the Lord is going to heal you, your gonna have surgery, come home and get a new home, new life, new start, your going to be able to leave it ALL behind, just the way the Lord had planned. (sooo true!!! I am holding on tight to that outlook!!!) Sometimes I have to laugh b/c I wonder just how much more He thinks I can take. Sometimes I just throw my hands up and say "Lord, I could use alittle break right now, my life is on uncertain grounds, we don't know what we are going to do, where are we going to live?" We leave tomorrow, and you guessed it....My kids started throwing up tonight, fever, and now mommy has to leave. I have no choice, I feel terrible, it breaks my heart! NOW? I can't stay!
HOPE. One word with an amazing impact on your outlook, emotions, passion, excitement. I didn't realize how powerful that word was until this week. The Lord opened the door and led me to a Dr. that specializes in me. My disease, my varicose bleeding veins in my throat, my blood clots, my high pressure inside my body pumping fast thru veins that can't handle the flow. The mess of what my body has become. So many clots in my major veins that we don't have anything left to work with, except create a surgery just for me. When I think about the realness, the seriousness, and mess of it inside my belly it makes me tremble with fear....I could be dead at any moment, and yet I am still here..... I love the Lord with all my heart and soul, why do I have that fear? I DO want to see the Lord, I DO.
Just when I thought I was so strong, ready to stay put together and face my friends at church, my pastor had to leave me with the most powerful message, he was speaking right to me and I cannot tell you how perfect it was for the future, even the past, that I have faced. GOD'S LEADING IN OUR LIVES. How will you and I respond? When you throw those hands in the air and say, what do I do?
1. Remind myself that GOD is always with me, guiding me. He has NEVER left me and even in the midst of this strange disease and the Dr's throwing me around from one to the next b/c they just don't know, I am NOT alone. God has been there holding my hand every single step of the way.
2. He will use me, not as I was, but who I have become b/c of HIM. He is shaping me to HIS purpose, to make Lisa who he wants her to be, and really, isn't that all that matters? I WANT to be who the Lord wants me to be, and if it takes hardships to get there, so be it. I want to be that person not just during those times, not only when I am struggling, but ALL the time.
3. God leads us step by step alittle at a time....there are times he has said, wait, no, shut doors and opened them. GOD has a plan, today and always even when we don't see it or know why, He has the whole picture in his hands.
Can you see why I should have taken a WHOLE BOX of Kleenex into church this morning. I looked like a train wreck walking out of there, I was so emotional and moved that I could hardly breathe!! Little Mrs. Martins told me that Don had a great message for me this morning, but she didn't warn me that I would be pouring tears into my coat! PERFECT. God knew exactly what I needed today just like every day. Don, you gave me the perfect gift, the reminder and faithfulness that God has a plan.
He opened this door to cleveland and I know he won't stop there. What am I going to do when its all done? That my friends is where the fun begins! Its been going so long that I almost can't imagine life any other way, its become who I am...Dr appoints, hospital stays, blood draws, injections, tests, CT's, MRI's, biopsies, scopes, pain....What am I going to do? I am going to be putting my faith into action and its gonna be on fire people! I want serve Him in anyway that my life can bring glory and honor to HIM. Help others, be there, be the friend, help those that are sick, cheer up with meals, watching their kids when they need to take naps, soooo many options and sooo much to do!!!!!!! The Lord gave me a great year of running my first ever 5k's, and not only that but getting firsts, seconds, 3rd. Do I say that thinking I am awesome, no not one bit, I never imagined even placing! But when I finished, I could feel the Lord with me, He gave me the gift of health back and I was running for HIM, and no one else, I could care less if I finish first or last b/c I am alive people!!! I am alive b/c of HIM. I have running shirts being made right now b/c someday I will be back and on the back it will say "TO GOD BE THE GLORY!". That my friends is what it is all about. Who am I? Absolutely nothing without the grace and love of my awesome Lord.
Driving tomorrow with HOPE, with God's lead, to a future that the Lord holds in His hands.
This week was a great week. I look around my house and its almost empty...If you haven't heard, the Lord decided to send that "right" buyer our way a few weeks ago and we have to be out by the end of the month. PERFECT timing....ya right! Then a friend of mine said, maybe it was perfect timing b/c the Lord is going to heal you, your gonna have surgery, come home and get a new home, new life, new start, your going to be able to leave it ALL behind, just the way the Lord had planned. (sooo true!!! I am holding on tight to that outlook!!!) Sometimes I have to laugh b/c I wonder just how much more He thinks I can take. Sometimes I just throw my hands up and say "Lord, I could use alittle break right now, my life is on uncertain grounds, we don't know what we are going to do, where are we going to live?" We leave tomorrow, and you guessed it....My kids started throwing up tonight, fever, and now mommy has to leave. I have no choice, I feel terrible, it breaks my heart! NOW? I can't stay!
HOPE. One word with an amazing impact on your outlook, emotions, passion, excitement. I didn't realize how powerful that word was until this week. The Lord opened the door and led me to a Dr. that specializes in me. My disease, my varicose bleeding veins in my throat, my blood clots, my high pressure inside my body pumping fast thru veins that can't handle the flow. The mess of what my body has become. So many clots in my major veins that we don't have anything left to work with, except create a surgery just for me. When I think about the realness, the seriousness, and mess of it inside my belly it makes me tremble with fear....I could be dead at any moment, and yet I am still here..... I love the Lord with all my heart and soul, why do I have that fear? I DO want to see the Lord, I DO.
Just when I thought I was so strong, ready to stay put together and face my friends at church, my pastor had to leave me with the most powerful message, he was speaking right to me and I cannot tell you how perfect it was for the future, even the past, that I have faced. GOD'S LEADING IN OUR LIVES. How will you and I respond? When you throw those hands in the air and say, what do I do?
1. Remind myself that GOD is always with me, guiding me. He has NEVER left me and even in the midst of this strange disease and the Dr's throwing me around from one to the next b/c they just don't know, I am NOT alone. God has been there holding my hand every single step of the way.
2. He will use me, not as I was, but who I have become b/c of HIM. He is shaping me to HIS purpose, to make Lisa who he wants her to be, and really, isn't that all that matters? I WANT to be who the Lord wants me to be, and if it takes hardships to get there, so be it. I want to be that person not just during those times, not only when I am struggling, but ALL the time.
3. God leads us step by step alittle at a time....there are times he has said, wait, no, shut doors and opened them. GOD has a plan, today and always even when we don't see it or know why, He has the whole picture in his hands.
Can you see why I should have taken a WHOLE BOX of Kleenex into church this morning. I looked like a train wreck walking out of there, I was so emotional and moved that I could hardly breathe!! Little Mrs. Martins told me that Don had a great message for me this morning, but she didn't warn me that I would be pouring tears into my coat! PERFECT. God knew exactly what I needed today just like every day. Don, you gave me the perfect gift, the reminder and faithfulness that God has a plan.
He opened this door to cleveland and I know he won't stop there. What am I going to do when its all done? That my friends is where the fun begins! Its been going so long that I almost can't imagine life any other way, its become who I am...Dr appoints, hospital stays, blood draws, injections, tests, CT's, MRI's, biopsies, scopes, pain....What am I going to do? I am going to be putting my faith into action and its gonna be on fire people! I want serve Him in anyway that my life can bring glory and honor to HIM. Help others, be there, be the friend, help those that are sick, cheer up with meals, watching their kids when they need to take naps, soooo many options and sooo much to do!!!!!!! The Lord gave me a great year of running my first ever 5k's, and not only that but getting firsts, seconds, 3rd. Do I say that thinking I am awesome, no not one bit, I never imagined even placing! But when I finished, I could feel the Lord with me, He gave me the gift of health back and I was running for HIM, and no one else, I could care less if I finish first or last b/c I am alive people!!! I am alive b/c of HIM. I have running shirts being made right now b/c someday I will be back and on the back it will say "TO GOD BE THE GLORY!". That my friends is what it is all about. Who am I? Absolutely nothing without the grace and love of my awesome Lord.
Driving tomorrow with HOPE, with God's lead, to a future that the Lord holds in His hands.
Monday, February 7, 2011
EMOTIONAL, TIRED, AND PRAISING OUR LORD
As I am sure you can imagine, it has been a MAJOR emotional rollercoaster for me over the past week. There wasn't a single day that past that I could make it without stopping, sooo tired, taking a break, and catching a nap with my precious little lukester sleeping next to me. It was the best feeling in the world, watching his little fingers, flipping his pipeys from hand to hand (ya, I know he's old for them, but I don't care!), just staring at him and reflecting on all the joy he gives my life.
Doesn't help that I have hypothyroidism on top of this, diagnosed in the ER last week, which also makes you very tired.....I knew I was going to get that! Runs in my family so no surprise but just another med that I don't like to take along with the fact that it can make you physically lose your mind! Anyone with thyroid issues will understand.
Everyone keeps asking me, so now what? Whats next? I say, I don't know.....My primary told me that he didn't understand why I wanted a second opinion. Hmmmmm maybe b/c noone really knows what it is I have, and my liver surgeon even admited that he just started doing these surgeries since he met me 2 years ago.....I thought my GI was working on a referal to the Henry Ford hospital liver surgeon in Detroit. Today I found out that isn't true, they didn't even call my insurance, she said my primary has too. Well, thats not true, but I called my primary and like they said, when a Dr's office says they are going to take care of it, we assume they mean it and we don't pursue it. But she said just like everyone else has said for over a week now "we will work on it." Really? Are you? Isn't anyone going to help me???
I got my labs drawn today and was discouraged to find that my hemoglobin is dropping....am I bleeding again? I called my primary, they never called me back. So I sit and wait. WAIT. Wait for what, for me to die? I called my liver surgeon last week at U of M and told him to sign me up for the surgery. He said he wanted to do it this week Wednesday! Um...Ok I said. Steve put me in my place and said no, we need to wait.....again, I am thinking wait for what? For me to die??? What other option do we have? We have to do something!
Then I reflect on the week and I can see the Lords hand everywhere I look. My bleed, even my allergic reaction to the blood transfusion was totally PROVIDENTIAL. Think about it....My liver surgeon told me that I would need a blood transfusion when I have my surgery. If this never happened I would be inti bated, laying at UofM in the middle of a 6 hour surgery, sedated and medicated with who knows what, and NO one would know I was having an allergic reaction to the blood until I probably went into cardiac arrest. How would they have known what it was, what med or reaction I was having when I couldn't physically TELL them what was happening. They would have had to guess. I probably would have died. Now we can be prepared. All in the Lords hands even when we don't understand. Shoot, if I can make it through last week I can make it through anything!
I had a close friend of mine that I have been praying for for years, that doesn't know the Lord, text me that she prayed! Do you know how excited I was!!! If I have to sacrifice myself so that someone else can come and know the Lord like I do, I will! Someone else very special to me hasn't had a sip of alcohol since the day I went to the hospital! I had a household full of friends come for an afternoon to pack up my house and someone from church gave us a storage rental to put it all in!!
I tell you what, most of you know me well that are reading this and you know that I am very strong (WAS) willed and I am NOT one that asks for help. I have always been independent, I can do it, I am superwoman, super mom, go go go go go!!! This has humbled me in the most amazing way and I have opened my arms and accepted help, I have asked for people to help watch my kids, I have asked for meals b/c I can't do it! I am allowing someone else take care of me instead of forcing Lisa to do it all alone and I realize that is what we are all here for!! We need to support, love, and HELP one another b/c we are the hands of christ and that is what we are called to do! We don't have to do it alone! I am not alone and people actually want to help me, it makes me feel sooo overwhelmed with emotion that tears just stream down my cheeks.
The Lord is alive and is with me and I feel his love just surrounding me and it is amazing! This life is not all we have and its time that we all start realizing that as a society, who cares what you drive, what your house looks like, do you think God really cares? Who are you going to live for, God, or the people that you think care but really don't? Oh man am I getting preacherish tonight! :) Sorry but I just can't hold back the Lords movement in my life.
So, I went to work today! I didn't think I would make it, and yes, I cried (surprise!) and I was very tired, and getting very upset about the physicians that I thought cared, but don't seem to want to help. How do people get anywhere with rare diseases and how do you get insurance to listen? I need help people and I don't know where to go and no one will help me b/c no one knows what to do with me!!!! I was so sad.
THEN IT CAME.....driving home, I get a call from my cousin who of all things is a Primary care physician at the cleveland clinic. He says "Lisa, I talked to my friend today who is a liver surgeon here about you, your symptoms, his advice and he said that there is ONE man that you HAVE to see, a man that is older, dedicated his whole medical career to portal hypertension, the bleeding from it, why it happens, the cures, the fixes, which is better, researched for years the surgeries out there for it, absolutely every aspect of it and he will know, his name is ______." BUT he doesn't take new patients. He is retired from research and is the director of the cleveland clinic. BUT I called his office and they agreed to let you see him." OH MY WORD!!!!!!!!!! Someone that knows and understands everything that I have!!! Someone that can help me!!! Someone that can guide me and give me direction!!! PRAISE THE LORD, tears were flowing out of my eyes again!!! People, friends, family....God has answered my prayer and I AM going to cleveland clinic to a man that knows everything about what I have, the ONE. The ONE I have been searching for. I may have to fight insurance to get there but I am going to fight every single day of my life till I get there, I AM SOOOOO EXCITED!!!!!!!!!!PRAISE THE LORD!!!!!!!! The Lord has a plan, He has my life in his hands and that gives me GREAT comfort. I love you all, keep those prayers coming! I am not close to done, I may have one foot in the grave already but I am not dead yet!
Doesn't help that I have hypothyroidism on top of this, diagnosed in the ER last week, which also makes you very tired.....I knew I was going to get that! Runs in my family so no surprise but just another med that I don't like to take along with the fact that it can make you physically lose your mind! Anyone with thyroid issues will understand.
Everyone keeps asking me, so now what? Whats next? I say, I don't know.....My primary told me that he didn't understand why I wanted a second opinion. Hmmmmm maybe b/c noone really knows what it is I have, and my liver surgeon even admited that he just started doing these surgeries since he met me 2 years ago.....I thought my GI was working on a referal to the Henry Ford hospital liver surgeon in Detroit. Today I found out that isn't true, they didn't even call my insurance, she said my primary has too. Well, thats not true, but I called my primary and like they said, when a Dr's office says they are going to take care of it, we assume they mean it and we don't pursue it. But she said just like everyone else has said for over a week now "we will work on it." Really? Are you? Isn't anyone going to help me???
I got my labs drawn today and was discouraged to find that my hemoglobin is dropping....am I bleeding again? I called my primary, they never called me back. So I sit and wait. WAIT. Wait for what, for me to die? I called my liver surgeon last week at U of M and told him to sign me up for the surgery. He said he wanted to do it this week Wednesday! Um...Ok I said. Steve put me in my place and said no, we need to wait.....again, I am thinking wait for what? For me to die??? What other option do we have? We have to do something!
Then I reflect on the week and I can see the Lords hand everywhere I look. My bleed, even my allergic reaction to the blood transfusion was totally PROVIDENTIAL. Think about it....My liver surgeon told me that I would need a blood transfusion when I have my surgery. If this never happened I would be inti bated, laying at UofM in the middle of a 6 hour surgery, sedated and medicated with who knows what, and NO one would know I was having an allergic reaction to the blood until I probably went into cardiac arrest. How would they have known what it was, what med or reaction I was having when I couldn't physically TELL them what was happening. They would have had to guess. I probably would have died. Now we can be prepared. All in the Lords hands even when we don't understand. Shoot, if I can make it through last week I can make it through anything!
I had a close friend of mine that I have been praying for for years, that doesn't know the Lord, text me that she prayed! Do you know how excited I was!!! If I have to sacrifice myself so that someone else can come and know the Lord like I do, I will! Someone else very special to me hasn't had a sip of alcohol since the day I went to the hospital! I had a household full of friends come for an afternoon to pack up my house and someone from church gave us a storage rental to put it all in!!
I tell you what, most of you know me well that are reading this and you know that I am very strong (WAS) willed and I am NOT one that asks for help. I have always been independent, I can do it, I am superwoman, super mom, go go go go go!!! This has humbled me in the most amazing way and I have opened my arms and accepted help, I have asked for people to help watch my kids, I have asked for meals b/c I can't do it! I am allowing someone else take care of me instead of forcing Lisa to do it all alone and I realize that is what we are all here for!! We need to support, love, and HELP one another b/c we are the hands of christ and that is what we are called to do! We don't have to do it alone! I am not alone and people actually want to help me, it makes me feel sooo overwhelmed with emotion that tears just stream down my cheeks.
The Lord is alive and is with me and I feel his love just surrounding me and it is amazing! This life is not all we have and its time that we all start realizing that as a society, who cares what you drive, what your house looks like, do you think God really cares? Who are you going to live for, God, or the people that you think care but really don't? Oh man am I getting preacherish tonight! :) Sorry but I just can't hold back the Lords movement in my life.
So, I went to work today! I didn't think I would make it, and yes, I cried (surprise!) and I was very tired, and getting very upset about the physicians that I thought cared, but don't seem to want to help. How do people get anywhere with rare diseases and how do you get insurance to listen? I need help people and I don't know where to go and no one will help me b/c no one knows what to do with me!!!! I was so sad.
THEN IT CAME.....driving home, I get a call from my cousin who of all things is a Primary care physician at the cleveland clinic. He says "Lisa, I talked to my friend today who is a liver surgeon here about you, your symptoms, his advice and he said that there is ONE man that you HAVE to see, a man that is older, dedicated his whole medical career to portal hypertension, the bleeding from it, why it happens, the cures, the fixes, which is better, researched for years the surgeries out there for it, absolutely every aspect of it and he will know, his name is ______." BUT he doesn't take new patients. He is retired from research and is the director of the cleveland clinic. BUT I called his office and they agreed to let you see him." OH MY WORD!!!!!!!!!! Someone that knows and understands everything that I have!!! Someone that can help me!!! Someone that can guide me and give me direction!!! PRAISE THE LORD, tears were flowing out of my eyes again!!! People, friends, family....God has answered my prayer and I AM going to cleveland clinic to a man that knows everything about what I have, the ONE. The ONE I have been searching for. I may have to fight insurance to get there but I am going to fight every single day of my life till I get there, I AM SOOOOO EXCITED!!!!!!!!!!PRAISE THE LORD!!!!!!!! The Lord has a plan, He has my life in his hands and that gives me GREAT comfort. I love you all, keep those prayers coming! I am not close to done, I may have one foot in the grave already but I am not dead yet!
Wednesday, February 2, 2011
IT HAPPENED....MY FIRST BLEED
I cannot begin to describe the events that have happened in my life over the past 5 days.....I believe I am feeling alot like those that go through a death or funeral and can't remember anything, it all feels like a dream or a fog, you don't remember seeing people, talking to them, nothing. Its like 5 days of my life were a dream.
Last week I had noticed that I was starting to lose blood, my stool if I must say was turning black, and no one would believe me b/c my lab values were somewhat "normal"....I continued to get weaker and weaker and yes Jillian, delusional huh? I was seriously losing it and her and I knew it. I kept calling my primary dr telling them that I was soo tired, I kept checking my own blood pressure and heart rate, and on Wednesday I even had my friends do an EKG on me b/c I thought I was dying and having a heart attack. On Friday we went to U of M and the whole way I prayed to the Lord that they would take me and admit me, find why I was getting weaker, I looked at Steve, held his hand and said that if I went home I thought I would probably die.
I laid on the table and told my liver surgeon that I was bleeding, he didn't believe me and told us to go home. I slept on the way there, back and 13 hours at night...By Saturday I could barely move, I couldn't take care of the kids, I didn't want to eat and started getting nauseous. I prayed and cried out to the Lord because I knew I was dying. I decided to get in the car, drop the kids off to grandmas and drive to the hospital refusing to leave till they found out what was wrong.
I needed a blood transfusion and had lost over 4 units of blood in a week. I wasn't bleeding fast, one the of the veins in my throat didn't rupture or I would be vomiting blood, but something, somewhere was leaking, probably since I had my veins wrapped on the 14th of January. My disease or whatever it is that I have, is progressing quickly and it is time to take a more aggressive approach. Once you bleed, I am probably going to bleed again. Thank the Lord for my good veins in my arms b/c I am sure that I have had over 30 blood draws and IV's in the past 4 days, we contemplated a pic line, and I am sure that if we had known I would be there that long, we would have done it. I am so used to my blood thinner injections whats a few more pokes huh? When you are at the lowest you could be, you really don't care what they do to you b/c you become numb to it all.
Then wouldn't you know it, I had an allergic reaction to the 2nd unit of blood!! I never knew you could have that. I was in the ICU and within 10 minutes of the 2nd unit, I felt the blood entering my lungs, I could taste it, my chest was tight, I got a rash all over my body and my legs started going numb....I started hyper ventilating I was sooo scared. I kept calling out to the Lord to hold my hand, looking at Steve and trying to calm myself down telling myself that I could make it, that I was in a good place, that they would help me. You can imagine the nurses, dr's, everyone running around with panic...injecting me with with tons of medications to stop the reaction. My poor mom and husband watching it all go down, watching me die. It was horrible, a complete nightmare. After about 10 minutes I became stable, and then I was out, out for the night.....
Anyways, they did a scope on sunday and couldn't really tell where I was bleeding from but I did stop. They stopped my blood thinners the second I arrived and they knew what was happening and my blood levels were coming back up. They wrapped 5 more veins in my throat. I have had consults now with the interventional radiologists on what to do, my liver surgeon at U of M, and GI dr. Everyone has a different opinion and no one knows for sure what is best to do but we all know we have to do something. It was soooo frustrating being in the hospital when the very Dr's that know everything about me didn't even know I was there! They are the only ones that can help me and no one would tell me what was going on b/c no one there knows! Steve called my liver surgeon and was ready to chew him out and trust me, that guy felt like crap when he found out I was in the ICU with a blood transfusion, he couldn't believe it! It is VERY complicated. The "tips" shunt in the liver might not be possible b/c of all my clots, and if we do the other, it might not work or reclot and then we don't have any veins in my abdomen left to do anything else.....Some are only temporary, some have never been tried on a person my age and we don't know how long it will last.
We are working on getting more opinions, wherever it may be, I really don't care, I just need someone to help us. Steve and I finally started begging the Dr's to help us, if they don't know, help us find the people that DO know. We don't know what to do! I dont' know where that expert is, I need my dr's to tell me and they aren't even talking to us. So for now we wait....I have blood draws every day, I will get my veins wrapped again on the 15th, and hopefully by the end of the month I will have the next plan. Today I FINALLY got to talk to my GI dr, the girls in the office wouldn't let me talk to him when I tried to call from the hospital....He FINALLY acted sincere and like he cared and reassured us that he would help us find the person to go to. He obviously doesn't have a crystal ball and I realize that, but he thinks we have time for a second opinion. I know how it feels to bleed now, so if it happens again, we know what to do and everyone at Metro knows us now and they will now know what to do too.
Thank you to everyone for praying for me. I have lived the last few days in a dream fading in and out, and that is when I need your prayers the most b/c I can't. I KNOW the Lord is with me and I know He is sad to see me suffering like this, and He cries with me too. He is all that I have to get me through this, I honestly don't know what people do that don't have the Lord in their life when they have hardship come into their lives....I couldn't do it without Him. I cling to His promises, He has a plan, He has my life in His hands and that is my only comfort. People ask me what they can do? I don't even know what to say b/c all I can do is focus on one day at a time! I have soo much to think about that I don't even know where to begin. I am trying to regain my strength so that I can fight the next battle. Please, keep praying, I cannot tell you how much it means to me. Thank you sooo much for all your love and support,
Lisa
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