Steve and I are about to leave for the dominican for a vacation and I just had to write today. First of all, I want to tell my children that I love them more than anything on this earth. I thank the Lord for blessing my life with them, the ability to have them, and treasure the days that I have with them. They are so precious and I cannot imagine living life without them. They bring meaning to my life and make me a better person. Kids are amazing and I love each and every stage of their little lives. I wish I could freeze time and keep them little just alittle longer....
I am so thankful to my family, for all that they have done for me, not only over the past year, but always. Mom and Dad, I don't know what I would do without you. I didn't understand the love that you have for me until I became a mother myself. The love that you have for your kids is undescribable and something you cannot comprehend unless you are a parent. Now I know and appreciate all that my parents have done. This year I relied on them alot, not that I wanted too, I felt bad about needing them so much but this year was unforseen with all the events, sorry Mom and Dad!!!! You have no idea how much it meant to me.
I am sooooo happy and still just in amazement that I look so good inside....It is a miracle. I will continue to pray about my health b/c we all really have no clue how thankful we should be about it. We could all be gone at any moment. You would think that I would understand that more from working at my job, scanning cancer patients, paralyzed patients, car accident patients, falls with huge brain bleeds, little babies that never had a chance to experience life past a few months....I have seen a TON, but it never really hit home until it happened to me. Mine was minor when I compare myself to all of those, but none the less, each day is a gift.
I pray that I live differently. It was a wake up call to Lisa. Makes me think of the song I sang as a little girl, "this is the day, this is the day that the Lord has made, we will rejoice and be glad in it". It is my prayer that I wake each morning with a joyful heart, look to the positive of all situations, and remember that life is but a second in comparion to my life spent with Him in eternity.
Tuesday, February 2, 2010
Sunday, January 31, 2010
I'VE SEEN MIRACLES HAPPEN
I cannot explain the huge relief in my heart today. I am amazed at what has happened and it can only be due to 2 things: The Lord and Lovenox (a different kind of blood thinner that I recently got switched too.) There is a new song out by Kutless: I've seen miracles that happen, silent prayers get answered, broken hearts become brand new, thats what FAITH can do. I LOVE that song. It is my favorite song and I listen to it almost every single day as a reminder to myself of the Lords faithfulness and love, and to keep believing in HIM and that miracles and prayers do get answered. They may not and will not always be answered the way that I want them to be, but that doesn't mean they are not answered. Its just all in HIS control and HIS plan, not mine. Sometimes its hard for me to have that kind of faith, to give HIM the control and sit back and let him do the work and the plan that he has for my life. It something that I long in my heart to improve on and I know I will. Too much has happened in my life that I can't turn my back on, and look to realize that it truly was HIM and that He was with me all the time. He has blessed my life in so many ways, I truly owe him all that I am and have. Isn't that what we were made for? To bring glory to Him and be thankful for his amazing love.
I, for the moment have NO signs of veins in my esophagus, I had veins that have reopened that were just recently full of clots, and today I am feeling GOOOOOOD. :) All the procedures that were going to be done at U of M were cancelled, I don't have to be scoped again for 4 months because my esophagus looked so good, and it is amazing. My Gastro, whom I love, Dr. Serini, couldn't believe what happened. He thought I went to U of M and had a recannalization done on my veins and was wondering what I was doing there on Friday. He just shook his head in amazement. As soon as he scoped me and saw how beautiful everything looked, he called my new primary and my liver surgeon at U of M to tell him the news. I am just so happy. It has been an amazing, crazy, scary, emotional rollercoaster of a ride, and one that I hope and pray is behind me. Yes, I will always have this "disease" but for now it is being managed and for that I say Praise the Lord. Its like being a diabetic and having to inject insulin twice daily. Yes, it does suck and it hurts, but you get used to it and when you look at what it could be...I've been through alot of stuff already in this life of mine, really hard stuff, its pretty minor and I will do it with no complaints.
This all is in HIS hands and in HIS control and I will be reminded of his faithfulness and goodness to me, everytime I think of what has happened....IT will always be this little reminder in my head. Life could be so much worse for all of us, we have soooooooo much to be thankful for, and yet so many of us feel sorry for ourselves and complain. Rejoice! He is good, and He loves us. That alone is worth celebrating.
I tell you what....I leave Wednesday for the Dominican with my husband Steve....We have rejoiced and will continue to rejoice forever. I cannot wait for this vacation that finally we get to go on! (it was cancelled last year due to my hospitalizations) We are so excited. Thank you Lord for your amazing love you have shown to me!
I, for the moment have NO signs of veins in my esophagus, I had veins that have reopened that were just recently full of clots, and today I am feeling GOOOOOOD. :) All the procedures that were going to be done at U of M were cancelled, I don't have to be scoped again for 4 months because my esophagus looked so good, and it is amazing. My Gastro, whom I love, Dr. Serini, couldn't believe what happened. He thought I went to U of M and had a recannalization done on my veins and was wondering what I was doing there on Friday. He just shook his head in amazement. As soon as he scoped me and saw how beautiful everything looked, he called my new primary and my liver surgeon at U of M to tell him the news. I am just so happy. It has been an amazing, crazy, scary, emotional rollercoaster of a ride, and one that I hope and pray is behind me. Yes, I will always have this "disease" but for now it is being managed and for that I say Praise the Lord. Its like being a diabetic and having to inject insulin twice daily. Yes, it does suck and it hurts, but you get used to it and when you look at what it could be...I've been through alot of stuff already in this life of mine, really hard stuff, its pretty minor and I will do it with no complaints.
This all is in HIS hands and in HIS control and I will be reminded of his faithfulness and goodness to me, everytime I think of what has happened....IT will always be this little reminder in my head. Life could be so much worse for all of us, we have soooooooo much to be thankful for, and yet so many of us feel sorry for ourselves and complain. Rejoice! He is good, and He loves us. That alone is worth celebrating.
I tell you what....I leave Wednesday for the Dominican with my husband Steve....We have rejoiced and will continue to rejoice forever. I cannot wait for this vacation that finally we get to go on! (it was cancelled last year due to my hospitalizations) We are so excited. Thank you Lord for your amazing love you have shown to me!
Sunday, January 17, 2010
The Lord has His Hand in it ALL
I don't know about you, but I am ready for winter to be over. I do NOT like, enjoy, anything about winter. Someday it is my dream to be one of those "folks" that get to live in the warmth for the winter, part time.I had great news this week and that all procedures planned at U of M are canceled. The physicians agreed with the results of my most recent CT and that most of my veins are now open again, and for the time, nothing to do interventionally. Unless I start bleeding or get ascites (free abdominal fluid) again. So what? We're just going to wait until that happens? Go live a normal life and lets just see how you do? Are we going to be checking to see if they come back? No one says. My radiologist said "DON'T go off anticoagulation!" My liver surgeon left his last email with: "you keep us guessing...." What does that mean?
So, this is good news. I am definitely happy to not be back at U of M right now. But at the same time I am filled with mixed emotions. I feel scared that I am a ticking time bomb. I feel like I don't have anyone in charge, whats the next step, what about followups?
I am in the middle of getting a new primary care physician, I need a good one, but no one has experience with what it is I have! What do I have??? I still remember the day about 1 1/2 years ago sitting in his office, crying to him b/c I told him there has got to be something wrong with me! His reply: "I know but I just think this is your year to have alot of difficulties". Granted, how could he have known what was going on inside of my body at that time, but we were about to find out! Not even 2 months after that, I landed myself in the hospital with all that has developed now over the past year.... I have to call the office alot, and trust me, I don't want too, but they are sooo rude, mean, fail to send out referrals, and never let me talk to a nurse, I'm just sick of it.... I need someone that knows what is actually going on with me.
I also am finding a new hematologist b/c my insurance will not let me return to the hematologist at U of M. I will go to my gastroenterologist on the 28th to have a look at the veins in my throat. If they are gone, I can return to exercising and living normal I guess.(don't worry Mom! I realize I can NEVER run again and I promise I won't. Trust me, I can't, or it could kill me, literally.) IF they are gone, I think we will be ok. For how long? No one knows. As long as I never go off my blood thinners, I may not ever have another occurrence again.
I could have died this past year. I have a serious disease that I will live with forever, that could honestly take my life at any time without any warning. No one knows why or what it is, my surgeon gives it the name "messenteric-venous occlusive disease." I make clots, these clots have caused alot of problems inside this body of mine. Its like living with cancer but its not active at the time...I look fine on the outside, I don't feel sick now, but inside, my body is a intricate maze.....The Lord has made our bodies absolutely mind boggling! Like my gastro said the first time he saw my veins "if you don't have something done, you will hemorrhage within a year". Steve and I cried all the way home. Granted, I still could die at any moment, but this life is not all there is....Did I truly live that way before all of this? I can honestly admit No. Nothing happens in this world, or to me, without the will of the Lord. Sometimes I struggle with Why? Why would God want this to happen to me? Why does He want me to have so much hurt? I know why. It was to grab ahold of Lisa, wake her eyes to the beautiful life she has, the amazing family she has, and to begin living forever grateful.....To serve the Lord with all her heart. This life is going to be over at anytime, its already going before my eyes! but my heart is with the Lord. This is honestly, probably the best thing that has ever happened to me. Through my pain, struggles and suffering, Thank you LORD! I love You!
Monday, January 11, 2010
GOD IS BIGGER THAN YOUR PROBLEM
Have you ever been to church and had a sermon speak to you in such an amazing way that you would swear it was the Lord speaking right to you??? This was the day for me. I arrived and it was a guest pastor. "oh great". (You know that is what you think, and I am so disappointed with myself for thinking that way, its just not the same without pastor Don!) But this time I was proven wrong, just like many times before.
The message "God is bigger than your problem". We all have them. That makes us normal right? I am sure glad to know that with all my problems that it actually makes me normal for once! :)
Whether it be a cheating spouse, addiction, relationship conflicts, family, kids, or your health, we all have something we are dealing with. I think if we say we don't, we are only lying to ourselves. We are not perfect and I am so glad that we aren't. Because that is what makes us all family and we should actually love each other more b/c of all our wacky problems and be there for each other! We should be able to cry on each others shoulders and support one another, what is your pain is mine. God calls us to LOVE. But instead we all want to act like we have it all together, and pretend that we don't have issues. Some out there sure can pull that off. They look good on the outside, they look perfect, but I know they aren't. I am not saying this to sound proud, but that is what sinful nature has given us, problems.
This message was so great, I am just going to leave the 5 points to save for myself b/c this is something I want to cheerish and keep. Obviously for me, it spoke to me the most about my health staring me currently right in the eye. My fear of the uncertain, my blood clots, this wierd disease that has come upon me. But I can use it for so many other things as well.
1.FACE YOUR PROBLEM- don't hide it, pretend it doesn't exist. Look at it head on.
2.BRING IT TO THE LORD IN PRAYER- constantly, never give up on the power of prayer!
3.RELY ON GODS PROMISES- my favorite one is Phil 4:13 "I can do all things through Christ who stregthens me."
4.PRAISE GOD ALWAYS -I sometimes fail to do this one b/c I am feeling sorry for myself, and wonder why me? Instead of looking at all the blessings he has given me, I look at the things I don't want, the parts of me that aren't perfect, or the things I don't have, or feel depressed for struggling with my problems. I can ALWAYS find something to praise Him for, I just need to focus on that.
5.GOD WILL GIVE YOU PEACE
God is with me. He is holding my hand and he cries with me when I am sad. But he will never give up on me. My life is in his hands. That my friends is Peace!
The message "God is bigger than your problem". We all have them. That makes us normal right? I am sure glad to know that with all my problems that it actually makes me normal for once! :)
Whether it be a cheating spouse, addiction, relationship conflicts, family, kids, or your health, we all have something we are dealing with. I think if we say we don't, we are only lying to ourselves. We are not perfect and I am so glad that we aren't. Because that is what makes us all family and we should actually love each other more b/c of all our wacky problems and be there for each other! We should be able to cry on each others shoulders and support one another, what is your pain is mine. God calls us to LOVE. But instead we all want to act like we have it all together, and pretend that we don't have issues. Some out there sure can pull that off. They look good on the outside, they look perfect, but I know they aren't. I am not saying this to sound proud, but that is what sinful nature has given us, problems.
This message was so great, I am just going to leave the 5 points to save for myself b/c this is something I want to cheerish and keep. Obviously for me, it spoke to me the most about my health staring me currently right in the eye. My fear of the uncertain, my blood clots, this wierd disease that has come upon me. But I can use it for so many other things as well.
1.FACE YOUR PROBLEM- don't hide it, pretend it doesn't exist. Look at it head on.
2.BRING IT TO THE LORD IN PRAYER- constantly, never give up on the power of prayer!
3.RELY ON GODS PROMISES- my favorite one is Phil 4:13 "I can do all things through Christ who stregthens me."
4.PRAISE GOD ALWAYS -I sometimes fail to do this one b/c I am feeling sorry for myself, and wonder why me? Instead of looking at all the blessings he has given me, I look at the things I don't want, the parts of me that aren't perfect, or the things I don't have, or feel depressed for struggling with my problems. I can ALWAYS find something to praise Him for, I just need to focus on that.
5.GOD WILL GIVE YOU PEACE
God is with me. He is holding my hand and he cries with me when I am sad. But he will never give up on me. My life is in his hands. That my friends is Peace!
Sunday, January 10, 2010
Thursday, January 7, 2010
MAJOR REVELATION! 1-7-2010
Oh my word, I don't even know where to start today. Should I be joyfull, exstatic, or angry??? Let me explain what has unravelled the past few days.
On Monday I went to work. I work in CT as most everyone knows. I wanted to scan myself to see how bad and severe my clots indeed were as the Radiologist had said leaving us the week before at U of M. So, I called my primary to get a "real" CT ordered b/c I needed to inject myself. I had it done and low and behold, it shows my Portal Vein wide open! The CT actually looks almost the same as it did last month. What? So I ran down to Ultrasound and had my friends scan me there just to confirm the flow and open Portal Veins. A radiologist came in too to confirm that yes, indeed everything looked great!
Do you know what this means????!!!!! I am scheduled to have those "clots" taken out on the 21st at U of M. They told me that my Portal Vein was so bad that I needed to get them out ASAP. I have been filled with Fear, worry, anxiety, sleepless nights, torment and lost at the knowledge to know what to do b/c I was given so many conflicting options. I cancelled the banding of my veins in my esophagus b/c the Radiologist told me he would take care of them from the inside during the procedure. I have been on the phone with soooooo many physicians this week trying to make sense of this all. Before this even happened!
Now...I called my friend Dr. Knox an interventional radiologist that I work with at Holland, he also did my first liver biopsy,at home last night. Told him what had been going on b/c the last I left him with, he thought I was getting a TIPS shunt. He told me that there is NO way I was that clotted a week ago and completely open now. Granted I am on 2 shots of blood thinners a day, but there is NO way they could help that much. Get that CD(the venogram they did during my 2nd biopsy there at u of m, this is a test in which shows the clots if there) and my team will go over the CT done on Monday and the Venogram with you and we will see what actually is going on and what we think. Do NOT have a recannalization (scheduled on the 21st at u of m) if your CT looks like it did when I looked at your last one with you did. (it does).
So, what does this mean?????
1. I had a complete miracle. Which I am not at all denying the amazing ability of my great Lord to do, and all the prayers being sent up on my behalf, I do believe Miracles still happen daily.
2. They were looking at my collaterals??? (yes these are still clotted, these are accessory veins that took over when my portal vein was clotted, but they are no longer needed b/c my portal vein is open so really we don't care if they are. They probably have been for a long time)
3. I probably wont need anything done on the 21st.
4. This is all great news!!!!! Praise the Lord and praise the Lord that I work in the medical field and take the steps he tells me in my heart to do, like giving myself a CT!!!! All the Dr's I work with to give me all their opinions, all my friends at work to scan me and help me! All my friends in the fileroom to call around to Hospitals to get my reports, CD's sent....Thank you Lord for my job!!!!!!!!
I immediately emailed my surgeon at U of M to tell him what I had discovered. He didn't say a whole lot except that it was good news. "Get me that CD of that CT" so it should be arriving there today. "I will show it to Dasika(the U of M rad that does all my procedures)" Then "we can always come up with some other unnecessary procedure to do on you." (haha) I told him that was NOT funny. Do you honestly think Mike (my surgeon, he is my age and he wants to be called that) that in ONE week the anticoagulants could have done this? "its possible" he said. NO way! No one else agrees.
So, I obviously am filled with Joy and yet, what the heck is going on! I am beginning to be filled with doubt even more and every little step my physicans say or do! This is crazy! Do you know what I have gone through emotionally the last week thinking that I am about to die and that I am so filled with blood clots again? Every physician wanting to do a different thing about it?!!!! Talk about STRESS!! No wonder I gained 30pds! (just kidding:) But I have been eating like a crazy nut so don't be surprised if it indeed happens! :)
I will keep you posted! I am soooo anxious to hear news!!!!!!!!!!!!!!!!!!!!!!
On Monday I went to work. I work in CT as most everyone knows. I wanted to scan myself to see how bad and severe my clots indeed were as the Radiologist had said leaving us the week before at U of M. So, I called my primary to get a "real" CT ordered b/c I needed to inject myself. I had it done and low and behold, it shows my Portal Vein wide open! The CT actually looks almost the same as it did last month. What? So I ran down to Ultrasound and had my friends scan me there just to confirm the flow and open Portal Veins. A radiologist came in too to confirm that yes, indeed everything looked great!
Do you know what this means????!!!!! I am scheduled to have those "clots" taken out on the 21st at U of M. They told me that my Portal Vein was so bad that I needed to get them out ASAP. I have been filled with Fear, worry, anxiety, sleepless nights, torment and lost at the knowledge to know what to do b/c I was given so many conflicting options. I cancelled the banding of my veins in my esophagus b/c the Radiologist told me he would take care of them from the inside during the procedure. I have been on the phone with soooooo many physicians this week trying to make sense of this all. Before this even happened!
Now...I called my friend Dr. Knox an interventional radiologist that I work with at Holland, he also did my first liver biopsy,at home last night. Told him what had been going on b/c the last I left him with, he thought I was getting a TIPS shunt. He told me that there is NO way I was that clotted a week ago and completely open now. Granted I am on 2 shots of blood thinners a day, but there is NO way they could help that much. Get that CD(the venogram they did during my 2nd biopsy there at u of m, this is a test in which shows the clots if there) and my team will go over the CT done on Monday and the Venogram with you and we will see what actually is going on and what we think. Do NOT have a recannalization (scheduled on the 21st at u of m) if your CT looks like it did when I looked at your last one with you did. (it does).
So, what does this mean?????
1. I had a complete miracle. Which I am not at all denying the amazing ability of my great Lord to do, and all the prayers being sent up on my behalf, I do believe Miracles still happen daily.
2. They were looking at my collaterals??? (yes these are still clotted, these are accessory veins that took over when my portal vein was clotted, but they are no longer needed b/c my portal vein is open so really we don't care if they are. They probably have been for a long time)
3. I probably wont need anything done on the 21st.
4. This is all great news!!!!! Praise the Lord and praise the Lord that I work in the medical field and take the steps he tells me in my heart to do, like giving myself a CT!!!! All the Dr's I work with to give me all their opinions, all my friends at work to scan me and help me! All my friends in the fileroom to call around to Hospitals to get my reports, CD's sent....Thank you Lord for my job!!!!!!!!
I immediately emailed my surgeon at U of M to tell him what I had discovered. He didn't say a whole lot except that it was good news. "Get me that CD of that CT" so it should be arriving there today. "I will show it to Dasika(the U of M rad that does all my procedures)" Then "we can always come up with some other unnecessary procedure to do on you." (haha) I told him that was NOT funny. Do you honestly think Mike (my surgeon, he is my age and he wants to be called that) that in ONE week the anticoagulants could have done this? "its possible" he said. NO way! No one else agrees.
So, I obviously am filled with Joy and yet, what the heck is going on! I am beginning to be filled with doubt even more and every little step my physicans say or do! This is crazy! Do you know what I have gone through emotionally the last week thinking that I am about to die and that I am so filled with blood clots again? Every physician wanting to do a different thing about it?!!!! Talk about STRESS!! No wonder I gained 30pds! (just kidding:) But I have been eating like a crazy nut so don't be surprised if it indeed happens! :)
I will keep you posted! I am soooo anxious to hear news!!!!!!!!!!!!!!!!!!!!!!
Sunday, January 3, 2010
LIVING BY FAITH
So, I have diagnosed myself. I know that I have Budd Chiari syndrome, affecting one in 100,000. I just spoke to my cousin, who is a Dr. at the Cleveland Clinic in Ohio, and that is also the first thing he asked. No one so far has told me that I have it, but I just called 2 physicians and am awaiting their reply. The only thing doubting my mind, is why haven't they said that if it such a common disease involving blood clots, wouldn't they know that by now?
I spoke with my liver surgeon the day after getting home from U of M. He told me "lets sit back and do nothing, go on your vacation, and we will see how it goes." Then after alittle while he called me back and said to expect a call from the radiologist b/c my surgeon wants to put that shunt in, the whole original plan. My Radiologist told Steve and I that he did NOT want to put a shunt in and that after my procedure on Monday he would be seeing me before the 11th b/c he needed to get those clots outta there, like he did 6 months ago, b/c they are so bad. I also called my Gastroenterolgist and he said to do nothing. What?????
I talked to Steve and he said no way. So I called my surgeon back and asked him if he even talked to my radiologist b/c according to him, I would be back there within a week. He had NOT talked to him, he "tried". I basically started crying and told him "look, you need to figure this out. Think about me! These clots are not going to go away by themselves just like they didn't last time. We took them out! If these clots are so severe like the radiologist said, then think about the pressure they are placing on my veins in my throat, I could hemorrhage anytime, and basically am a ticking time bomb. He said I am a ticking time bomb either way. Then I said "You need to talk to my Radiologist and figure out what you guys are going to do!" His reply, I will try but he is busy, unlike me (haha he actually laughed). I told him "if he's not that busy then I will give you something to be busy about, figure out what is wrong with me and figure out what we are going to do about it!"
He then told me "well quit being so complicated." (haha again.)
I had enough that day. Sometimes you just need to be persistant I am learning b/c if I am not, I will never get anywhere. I am just a number there at U of M. I am not a person with a family, a wife, friend, mother.....
They don't care. Like Steve and I both said, you just get so sick of it, that you start becoming numb and not caring. Throw up your arms and say to yourself, Who cares? They don't, and I am starting to not either. Thank the Lord I am in the medical field myself b/c I can only imagine what would have happened to me already! I cannot imagine what people that don't have any clue have happen to them. The medical world makes mistakes, and they would have done plenty on me already if I hadn't known enough. It is soooo scary to think about and like I said, Thank God, I know enough not to just go with the flow and do whatever these Dr's say.
So what are we going to do? No one knows. No one has said. My surgeon called again and told me to expect a call from my radiologist b/c he wants to take the clots out. Great! That is what I want too. After reading up on it, and learning, I do NOT want a TIPS shunt like I was supposed to get on monday. The Dr's all have their own opinion and I see the facts behind their view, but I just don't know which one is right. THEY don't know.....
I am thinking about getting a second opinion. As for now, like my title says, I am living by faith. Scared? Not really. Nervous, worried? Not really anymore. I started not caring. Maybe that is all the prayers working on my heart. The Lord has my life in his hand, he has a plan and path for me, and ultimately HE knows what will happen. If, my time ends, I know I am going to be with Him. He has my life, He is my only strength and comfort in life, and I feel his arms around me. A peace has overcome me.....Thank you Lord.
I spoke with my liver surgeon the day after getting home from U of M. He told me "lets sit back and do nothing, go on your vacation, and we will see how it goes." Then after alittle while he called me back and said to expect a call from the radiologist b/c my surgeon wants to put that shunt in, the whole original plan. My Radiologist told Steve and I that he did NOT want to put a shunt in and that after my procedure on Monday he would be seeing me before the 11th b/c he needed to get those clots outta there, like he did 6 months ago, b/c they are so bad. I also called my Gastroenterolgist and he said to do nothing. What?????
I talked to Steve and he said no way. So I called my surgeon back and asked him if he even talked to my radiologist b/c according to him, I would be back there within a week. He had NOT talked to him, he "tried". I basically started crying and told him "look, you need to figure this out. Think about me! These clots are not going to go away by themselves just like they didn't last time. We took them out! If these clots are so severe like the radiologist said, then think about the pressure they are placing on my veins in my throat, I could hemorrhage anytime, and basically am a ticking time bomb. He said I am a ticking time bomb either way. Then I said "You need to talk to my Radiologist and figure out what you guys are going to do!" His reply, I will try but he is busy, unlike me (haha he actually laughed). I told him "if he's not that busy then I will give you something to be busy about, figure out what is wrong with me and figure out what we are going to do about it!"
He then told me "well quit being so complicated." (haha again.)
I had enough that day. Sometimes you just need to be persistant I am learning b/c if I am not, I will never get anywhere. I am just a number there at U of M. I am not a person with a family, a wife, friend, mother.....
They don't care. Like Steve and I both said, you just get so sick of it, that you start becoming numb and not caring. Throw up your arms and say to yourself, Who cares? They don't, and I am starting to not either. Thank the Lord I am in the medical field myself b/c I can only imagine what would have happened to me already! I cannot imagine what people that don't have any clue have happen to them. The medical world makes mistakes, and they would have done plenty on me already if I hadn't known enough. It is soooo scary to think about and like I said, Thank God, I know enough not to just go with the flow and do whatever these Dr's say.
So what are we going to do? No one knows. No one has said. My surgeon called again and told me to expect a call from my radiologist b/c he wants to take the clots out. Great! That is what I want too. After reading up on it, and learning, I do NOT want a TIPS shunt like I was supposed to get on monday. The Dr's all have their own opinion and I see the facts behind their view, but I just don't know which one is right. THEY don't know.....
I am thinking about getting a second opinion. As for now, like my title says, I am living by faith. Scared? Not really. Nervous, worried? Not really anymore. I started not caring. Maybe that is all the prayers working on my heart. The Lord has my life in his hand, he has a plan and path for me, and ultimately HE knows what will happen. If, my time ends, I know I am going to be with Him. He has my life, He is my only strength and comfort in life, and I feel his arms around me. A peace has overcome me.....Thank you Lord.
Wednesday, December 30, 2009
Monday, December 28, 2009
Dec.28, 2009 In U of M hospital
today was a very emotional day for me. Steve and I were scheduled to arrive at 7:30am, we spent the night in fear of a long drive and weather. I was "supposed" to be getting a biopsy and a shunt placed in my liver called a TIPS. We arrived and were told that the radiologist scheduled to do my procedure did NOT want to do a tips. The reason we were told on arrival is b/c it was his first day back from vacation and only my liver surgeon thought it was possible. He never really showed it to the radiologist like we had thought, and today was the first time he saw my CT follow up since the last procedure he had done.
Like he said, why put a permanent thing inside of you when your liver isn't failing. People that get these have liver failure and by by-passing my liver we only set you up for future problems. You are young, you are a mother, and I do NOT think this is the best interest for you. Do I know what is? No. We need to have a biopsy and test your pressures and see what is going on today and wait for the results of your biopsy and then we can determine what the next step will be, but only by consulting with your liver surgeon, me (the radiologist), and hematology.
So finally around 11am I went into the cathlab. They went down my jugular vein in my neck, did a biopsy and measured the internal pressures within my veins. I got out at 12:30pm.
Very very bad news he said.
From the CT one month ago, you are majorly worse and severely clotted in almost ever single vein within my liver. My Portal vein is almost completely clotted again. Right now they have no idea what to do.
So the plan:
Like he said, why put a permanent thing inside of you when your liver isn't failing. People that get these have liver failure and by by-passing my liver we only set you up for future problems. You are young, you are a mother, and I do NOT think this is the best interest for you. Do I know what is? No. We need to have a biopsy and test your pressures and see what is going on today and wait for the results of your biopsy and then we can determine what the next step will be, but only by consulting with your liver surgeon, me (the radiologist), and hematology.
So finally around 11am I went into the cathlab. They went down my jugular vein in my neck, did a biopsy and measured the internal pressures within my veins. I got out at 12:30pm.
Very very bad news he said.
From the CT one month ago, you are majorly worse and severely clotted in almost ever single vein within my liver. My Portal vein is almost completely clotted again. Right now they have no idea what to do.
So the plan:
- Wait for my liver biopsy results
- consult hematology again b/c we MUST get to the bottom of my clotting problem
- in a week I will be back here at U of M and either have a a major surgery, intense recannalization of all my veins (again, this is what we did last time, cleaning out the veins) or put a TIPS shunt in if indeed my liver is now failing b/c of all the blockage to my liver
I had a breakdown a few times throughout the day. One, b/c my family physician told me to go off my coumadin and it looks like during that time, I threw more clots, I can NEVER go off blood thinners. My PC doesn't take me or this disease serious and I feel like no one is listening except when I am here at U of M. Two, WHY is this happening!! What is wrong with me? Something MUST be wrong for me to clot like this. Like Cheryl my friend said, this is no longer the "fluke from Luke". This is VERY very serious. Not only serious but sooooo confusing and no one knows what to do!
Then go figure, I take some pain meds when I get to my room b/c my neck incision hurts so bad...Well, about 3 hours later I am dry-heaving and puking in the bathroom b/c I didn't eat with the meds and they made me sick. This ripped open my incision in my neck and I started bleeding all over. Talk about pain now! This time I am dealing with the pain and I will stay away from pain meds. I had to change rooms b/c my neighbor is so loud, talks on her cell phone and has it ringing NON stop, talks about diarrhea and runs to our bathroom every 10 minutes. I didn't ask, my Nurse actually couldn't take it anymore and decided I needed my own room. I was grateful :)
I have no idea what to think. I think about my awesome husband by my side, and my beautiful children at home. I WILL survive, I will be there for them someday 100%! I think about all my friends and family and the good Lord that holds my hand each day. Without the strength of the Lord I honestly don't know how I would make it. I think about giving up, but I can't.....Somehow, someway, this will come to an end, and I pray that it will be but a distant nightmare...
Goodnight. I am going to take some Ambien now and knock myself out for the night.
Tuesday, December 15, 2009
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.
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.
Friday, December 11, 2009
6th SCOPE/BANDING OF VEINS
I cannot sleep. Yes, I took a nap when I got home b/c I was so sedated, but I normally sleep fine at night. I have a ton of things running through my brain and cannot slow it down. I woke up with pain and unless I stay on top of my meds, the pain is unbearable.
It takes a whole day to recuperate and then some for me. All for 6 minutes of a procedure!!! How is that possible? I arrive 1 hour early, stay in the surgical room about 30-40 minutes, and then 2 hours in recovery. Come home and sleep the sedation off, and if they do banding, remain on as much drugs as I can and rest....Its terrible. Especially for me b/c I am NOT one to sit around and I never take naps. I felt completely withdrawn from my kids all day b/c I couldn't really do anything with them. I saw them, but its just not the same.
Dr. Serini was really quiet. Hardly spoke a word to me. I think its b/c there is nothing else he can do. He doesn't know why this is back, why it happened, and he doesn't know what they are going to do. He is a colon dr. not a blood vessel doc. He is dealing with the consequences of a primary condition and doing what he can to keep me alive in his realm of his specialty.
He said he has to band me again in a month.....Man it hurts! I have a high pain tolerance but this sucks. I don't know how they do it but somehow they wrap rubber bands around the root of the vein to kill off the blood supply and prevent it from getting larger and eventually hemorrhaging. Isn't that amazing?
He did say he spoke with Englesbe, my liver surgeon to tell him what he saw last week and that my varices are back. I wonder what Englesbe is going to do. I think it means a big surgery, a risky surgery, one that I could die from, b/c thats why we didn't do that option first. We were all hoping that this first attempt would work. I know they can't do nothing b/c I can't live like this. Realistically my veins will eventually hemorrhage and kill me, or the clots will kill me so what choice do I have.....
I know I shouldn't speculate b/c who knows...Maybe it won't be that bad. I just don't want to be away from my kids again. Last time it was 10 days for me and that was really hard on me. They would come to see me in the hospital but they didn't even dare touch me b/c they were scared off all the IV's in mom and Karlie was afraid she would hurt me. It made me cry.
Ok, I guess I will try to sleep again.
It takes a whole day to recuperate and then some for me. All for 6 minutes of a procedure!!! How is that possible? I arrive 1 hour early, stay in the surgical room about 30-40 minutes, and then 2 hours in recovery. Come home and sleep the sedation off, and if they do banding, remain on as much drugs as I can and rest....Its terrible. Especially for me b/c I am NOT one to sit around and I never take naps. I felt completely withdrawn from my kids all day b/c I couldn't really do anything with them. I saw them, but its just not the same.
Dr. Serini was really quiet. Hardly spoke a word to me. I think its b/c there is nothing else he can do. He doesn't know why this is back, why it happened, and he doesn't know what they are going to do. He is a colon dr. not a blood vessel doc. He is dealing with the consequences of a primary condition and doing what he can to keep me alive in his realm of his specialty.
He said he has to band me again in a month.....Man it hurts! I have a high pain tolerance but this sucks. I don't know how they do it but somehow they wrap rubber bands around the root of the vein to kill off the blood supply and prevent it from getting larger and eventually hemorrhaging. Isn't that amazing?
He did say he spoke with Englesbe, my liver surgeon to tell him what he saw last week and that my varices are back. I wonder what Englesbe is going to do. I think it means a big surgery, a risky surgery, one that I could die from, b/c thats why we didn't do that option first. We were all hoping that this first attempt would work. I know they can't do nothing b/c I can't live like this. Realistically my veins will eventually hemorrhage and kill me, or the clots will kill me so what choice do I have.....
I know I shouldn't speculate b/c who knows...Maybe it won't be that bad. I just don't want to be away from my kids again. Last time it was 10 days for me and that was really hard on me. They would come to see me in the hospital but they didn't even dare touch me b/c they were scared off all the IV's in mom and Karlie was afraid she would hurt me. It made me cry.
Ok, I guess I will try to sleep again.
Sunday, December 6, 2009
Being a MOM- to Karlie and Luke
One of my favorite things in life has been becoming and being a mom. I received a devotional book shortly after having Karlie and it has become my favorite one and I have now read it twice. Its all about being a mom. Here are some of my favorite quotes in it:
"Thank you Lord for the sweetest human experience thus far in my life"
"When it comes to love, until I saw that "+" on a little stick, I didn't know the half of it!"
"Father, I will never be able to thank You enough for my beautiful daughter but with my own life, I will try"
"My children have taught me that I have God-given instincts that I never would have believed until now"
"thank you for awakening in me a new kind of love-a love that shows me a clearer picture of the Love God has for me"
"God infinitely loves my children more!" and He does me too!
I remember a lot of things about my "old" life, the Lisa that could go anywhere I wanted, when I wanted too, no plans, staying up late because I WANTED too, sleeping in...but one thing I don't remember is what my heart was like before I became Karlie and Lukes mom. I can tell you, It has been completely transformed.
Nothing can put a smile on a moms face quicker than hearing little feet running towards the door and the exclaimed "Mommy!" as I walk through the door. The changes in my life are amazingly worth it. Sure I have days of frustration, feeling drained, but at the end of the day I wouldn't trade my life for anyone else's b/c of my children. I loved being pregnant and miss it so much. I don't miss getting them out, and I think I can say with confidence that mine were terrible, if you want to know why, I can gladly explain! (separated pelvis, broken back, 27 hours of labor, 3 hours pushing, both kids taken to neonatal, mom sicker than a dog, allergic reactions to meds...)
Some nights I lay in Karlies bed for hours just staring at her (yes she snores but not as loud as her dad!). Its just so hard to imagine that they are mine, they came from my body, they are so beautiful to me. I sneak into Lukesters room and just treasure the sound and smell of his room, even if he wakes up in the night, he's my last one and I try to treasure the moments b/c it won't be long and I won't be able to hold him in my arms, he's not going to want his mom and my days of cuddling and holding him will be gone. It makes me so sad to even think about it. Soon mom will be tossed aside and it will be on to more important things: school, friends, love (or so you think), sports...
They say life goes fast. Talk to one elderly person and they will bring it up, especially if you bring up the kids. No one told me it would go THIS fast! Sometimes I ask the Lord just to freeze time for a little while, b/c it just doesn't seem fair....The older you get, the faster it goes! They are small for such a short time! Pretty soon they will be off to school, and the days of being home with mom will be gone! Just when you finally realize you need to start appreciating what life you got, its almost done! You can't turn around and do it over so I make it my everyday effort to live it with no regrets. I often think of that song: "live like you were dying" that song has alot of truth to it. I think everyone would live so differently....
I'll be the first to tell you, I think everyone could use a little wake up call. I am not perfect, I am a terrible sinner, I have done so much wrong, I am not a very good wife at times, I am not the best friend I should be, and I am going to fail at being a mom too BUT I know I won't do any of it alone. My family, children, and friends see me all the time, and know me at my worst and it is my prayer that at these times they can see past me, and see Jesus.
That my friends is what has changed, my heart. It needs a TON of work and that work will never end, I just pray that it starts each day with my own little wake-up call, that Lisa needs to live each and every day as if it were my last. I want to do it, I am going to try hard to be a better wife, mother, sister, friend....I know I will fail, but I am going to keep on trying!
Karlie and Luke, not even Grandma Nyenhuis, loves you more than you mom does....Someday when you become a parent yourself you will totally understand how I feel and you will be in awe at the Love a parent has for their children. I love being a mom and you have made me a better person, you have taught me some valuable lessons I will treasure forever. I wish I could freeze time and just enjoy you one on one for days! Mom and dad, thank you for all you have sacrificed on behalf of me and for loving me so much....Its mind boggling!
Lisa
"Thank you Lord for the sweetest human experience thus far in my life"
"When it comes to love, until I saw that "+" on a little stick, I didn't know the half of it!"
"Father, I will never be able to thank You enough for my beautiful daughter but with my own life, I will try"
"My children have taught me that I have God-given instincts that I never would have believed until now"
"thank you for awakening in me a new kind of love-a love that shows me a clearer picture of the Love God has for me"
"God infinitely loves my children more!" and He does me too!
I remember a lot of things about my "old" life, the Lisa that could go anywhere I wanted, when I wanted too, no plans, staying up late because I WANTED too, sleeping in...but one thing I don't remember is what my heart was like before I became Karlie and Lukes mom. I can tell you, It has been completely transformed.
Nothing can put a smile on a moms face quicker than hearing little feet running towards the door and the exclaimed "Mommy!" as I walk through the door. The changes in my life are amazingly worth it. Sure I have days of frustration, feeling drained, but at the end of the day I wouldn't trade my life for anyone else's b/c of my children. I loved being pregnant and miss it so much. I don't miss getting them out, and I think I can say with confidence that mine were terrible, if you want to know why, I can gladly explain! (separated pelvis, broken back, 27 hours of labor, 3 hours pushing, both kids taken to neonatal, mom sicker than a dog, allergic reactions to meds...)
Some nights I lay in Karlies bed for hours just staring at her (yes she snores but not as loud as her dad!). Its just so hard to imagine that they are mine, they came from my body, they are so beautiful to me. I sneak into Lukesters room and just treasure the sound and smell of his room, even if he wakes up in the night, he's my last one and I try to treasure the moments b/c it won't be long and I won't be able to hold him in my arms, he's not going to want his mom and my days of cuddling and holding him will be gone. It makes me so sad to even think about it. Soon mom will be tossed aside and it will be on to more important things: school, friends, love (or so you think), sports...
They say life goes fast. Talk to one elderly person and they will bring it up, especially if you bring up the kids. No one told me it would go THIS fast! Sometimes I ask the Lord just to freeze time for a little while, b/c it just doesn't seem fair....The older you get, the faster it goes! They are small for such a short time! Pretty soon they will be off to school, and the days of being home with mom will be gone! Just when you finally realize you need to start appreciating what life you got, its almost done! You can't turn around and do it over so I make it my everyday effort to live it with no regrets. I often think of that song: "live like you were dying" that song has alot of truth to it. I think everyone would live so differently....
I'll be the first to tell you, I think everyone could use a little wake up call. I am not perfect, I am a terrible sinner, I have done so much wrong, I am not a very good wife at times, I am not the best friend I should be, and I am going to fail at being a mom too BUT I know I won't do any of it alone. My family, children, and friends see me all the time, and know me at my worst and it is my prayer that at these times they can see past me, and see Jesus.
That my friends is what has changed, my heart. It needs a TON of work and that work will never end, I just pray that it starts each day with my own little wake-up call, that Lisa needs to live each and every day as if it were my last. I want to do it, I am going to try hard to be a better wife, mother, sister, friend....I know I will fail, but I am going to keep on trying!
Karlie and Luke, not even Grandma Nyenhuis, loves you more than you mom does....Someday when you become a parent yourself you will totally understand how I feel and you will be in awe at the Love a parent has for their children. I love being a mom and you have made me a better person, you have taught me some valuable lessons I will treasure forever. I wish I could freeze time and just enjoy you one on one for days! Mom and dad, thank you for all you have sacrificed on behalf of me and for loving me so much....Its mind boggling!
Lisa
Thursday, December 3, 2009
Dec.2009-6 months of freedom
Well for 6 months I have lived the good life. I enjoyed my life to the fullest, went camping a ton with my children enjoying nature, Gods creation, and every moment truly taking in each little pleasure of LIFE.
I knew this time was coming, my 6 month check up. Everything was going great so I was very excited to hear the next step, I thought everything was fine and we could pull me off my meds, the procedure of cleaning out the clot at U of M was successful.
That was until last week. Thanksgiving. Again, I woke up thanking the Lord for life and all the many blessings He continues to give me when I am so undeserving. Went to church, ran 5 miles, (nothing new, my Dr's gave me clearance for it) finished and my stomach started to grow. I had the same feeling in my abdomen that started this whole thing, I was crampy, painful, and started to cry b/c for the 1st time in 6 months I realize that this whole thing just might not be over!
I had a scope today with my Gastrointestinal Dr today. He told me this weekend to stay on Coumadin (blood thinner) b/c he didn't expect he would have to do a thing b/c last time the varices (large veins) in my throat were gone and he did not anticipate seeing anything again. Well, I am sorry to hear the news and was fearful of hearing them from the very start b/c deep in my heart I knew what he was going to say. "They are back, they are large, the needed to be banded (wrapped and compressed) ASAP b/c they are looking like they are going to hemorrhage."
Meaning: my veins are back and large enough to hemorrhage, my pressure inside has NOT returned to normal, working out again has pushed my pressure up and my symptoms have returned b/c the clots have come back. BACK TO THE DRAWING BOARD!
I will be off my coumadin for the next week (good for my veins that could hemorrhage b/c that is scary for them) but it doesn't help with my clots. I hope I am making sense but these 2 things contradict each other and I don't know which they are going to choose. Coumadin=breaks up/prevents the clots Coumadin also makes your blood thin and with varices that is the last thing you want to be on with chance of hemorrhage. I will have them wrapped next week Thurs. and then on the 14th head to U of M to discuss the next step. Option one seemed to have failed, Option 2???? We had one at the time, I know it involves a very serious surgery with life threatening possibilities, but I guess I am there now again anyways.....
Today has been a very emotional day for me. Actually ever since last Thursday b/c I knew in my heart I was not healed as I had thought. I think about what I have already gone through, it seems like a nightmare, and I am scared. It seems so long ago and yet, it is all still so vivid in my mind....I don't want to die and I know that is one of my weaknesses I struggle with the Lord with, I shouldn't be, but I just can't believe all of this is happening again. I also know it doesn't mean I will die, but trust me, it is something I think about, it is possible. We have to do something to help me live a full life and it looks like we have to start over again.....
I just think about my husband, kids, today I just cling to them and savor their little miracles that have blessed my life in SOOOO many ways. I love my children and I am scared to leave them.....
Ok enough,
Goodnight.
Lisa
I knew this time was coming, my 6 month check up. Everything was going great so I was very excited to hear the next step, I thought everything was fine and we could pull me off my meds, the procedure of cleaning out the clot at U of M was successful.
That was until last week. Thanksgiving. Again, I woke up thanking the Lord for life and all the many blessings He continues to give me when I am so undeserving. Went to church, ran 5 miles, (nothing new, my Dr's gave me clearance for it) finished and my stomach started to grow. I had the same feeling in my abdomen that started this whole thing, I was crampy, painful, and started to cry b/c for the 1st time in 6 months I realize that this whole thing just might not be over!
I had a scope today with my Gastrointestinal Dr today. He told me this weekend to stay on Coumadin (blood thinner) b/c he didn't expect he would have to do a thing b/c last time the varices (large veins) in my throat were gone and he did not anticipate seeing anything again. Well, I am sorry to hear the news and was fearful of hearing them from the very start b/c deep in my heart I knew what he was going to say. "They are back, they are large, the needed to be banded (wrapped and compressed) ASAP b/c they are looking like they are going to hemorrhage."
Meaning: my veins are back and large enough to hemorrhage, my pressure inside has NOT returned to normal, working out again has pushed my pressure up and my symptoms have returned b/c the clots have come back. BACK TO THE DRAWING BOARD!
I will be off my coumadin for the next week (good for my veins that could hemorrhage b/c that is scary for them) but it doesn't help with my clots. I hope I am making sense but these 2 things contradict each other and I don't know which they are going to choose. Coumadin=breaks up/prevents the clots Coumadin also makes your blood thin and with varices that is the last thing you want to be on with chance of hemorrhage. I will have them wrapped next week Thurs. and then on the 14th head to U of M to discuss the next step. Option one seemed to have failed, Option 2???? We had one at the time, I know it involves a very serious surgery with life threatening possibilities, but I guess I am there now again anyways.....
Today has been a very emotional day for me. Actually ever since last Thursday b/c I knew in my heart I was not healed as I had thought. I think about what I have already gone through, it seems like a nightmare, and I am scared. It seems so long ago and yet, it is all still so vivid in my mind....I don't want to die and I know that is one of my weaknesses I struggle with the Lord with, I shouldn't be, but I just can't believe all of this is happening again. I also know it doesn't mean I will die, but trust me, it is something I think about, it is possible. We have to do something to help me live a full life and it looks like we have to start over again.....
I just think about my husband, kids, today I just cling to them and savor their little miracles that have blessed my life in SOOOO many ways. I love my children and I am scared to leave them.....
Ok enough,
Goodnight.
Lisa
Tuesday, September 22, 2009
Summary of Summer 2009
We had an unbelieveable summer. We camped at Grandhaven for a week, Holland State Park for a week, Cottage at Brooks lake, Cottage at Conference grounds, camping at Conference grounds, and we ended it with a camping night in Grandpa and Grandma Nyenhuis' front yard!
We absolutely LOVE camping. We learned alittle more each and every time to make things easier on the kids and mom! I absolutely enjoyed each and every day. It was a beautiful summer for me. Maybe b/c I appreciated life all the more! I look at my children and cheerish them so so much! They are the love of my life and I love being a mom. Sometimes I am not a very good mom and I have my struggles but I pray for their lives, I pray they realize how much I love them, that I would do anything for them, and I pray they have a wonderful life and love their Lord.
Sometimes at night I go in their rooms and just stare at them. They are so beautiful. Karlie is such a sweetheart, big sister, and so loving. She loves her Lukester and I pray they have a wonderful relationship b/c they are all they are going to have! Sometimes she cries when I tell her I can't have any more babies, she wants a sister. It makes me feel bad but someday when she is a mom, she will understand what mom went through.....
Lukester is such a doll, he melts my heart all the time. He loves his mom, and he is such a boy, running, jumping, throwing, screaming, and loving dirtbikes already! I just don't want them to get old. Lord, can't you freeze time for just a couple of years so I can stay where I am right now for....10 years???? I don't want to get old, I don't want my kids to get old. I love the life we have and cheerish the days we have!
CONFERENCE GROUNDS 2009
We have a yearly tradition of going to the conference grounds and staying in the cottages (we had 4 this year) with all the aunts, cousins, and kids.
We ended up having so much fun that we decided to stay another week in our camper. Highlights always include: the candy store, swimming pool, bibleschool and the playground. We also bought a kite this year and the kids had so much fun taking turns flying it.
We watched a meteor shower, and had fun having a fashion show with new clothes from Grandma N! We LOVE camping!!
BEEN AWHILE! (END OF SUMMER)
Luke 1&1/2, Jackson 2, Karlie 3&1/2, Alexis 6, Dylan 4, Kinsley 2 mo., Sophia 3 mo.
We spent a week in a cottage on Brooks lake near Newago with the Jongsma family.
We had a great time and beautiful weather. The kids were so tired by the end of the week, Karlie got sick with the flu for a few days, and that wasn't much fun for her!
The highlights of the week included: 1st time tubing for Karlie, feeding attacking geese, paddleboat rides, speedboat rides, Uncle Dave crashing a Jetski, throwing waterballoons,
and beanbag contests and our new favorite board game (????). We hope to keep the tradition going.
Monday, July 13, 2009
Great news, no doctors for 6 months!
My surgeon called me a few weeks ago after my 4th upper scope with more banding of my veins in my esophagus and he told me that everything looked great! My veins were going down, some of them were gone, and the best news: I don't have to do a thing for 6 months. I almost don't even know what to think or feel, its just so crazy to go through all I have in 2 months with so many appointments, procedures....to nothing! Its all I have been thinking about, dreaming about, every waking moment, I wonder whats next......
Its awesome and an amazing feeling to know that hopefully this is all behind me and will only be but a terrible dream to me someday. Yes, I still am on injections but life could be worse, MUCH worse and for the time, I am going to rejoice in the Lord for He is good, and He has blessed me in soooooooo many ways. I have a wonderful life, thank you Lord!
Holland camping 2009
I have been enjoying this summer so much! We got a new camper so this was our 2nd time and we had so much fun. The weather wasn't the greatest but none the less, I love spending time in nature, with the Lord, and enjoying my life right now with my children.
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