Thursday, January 6, 2011
SUMMARY AS OF JANUARY 6, 2010
I think what makes it the most hard is not knowing. What is it? Why did it happen? Obviously there is something wrong with my body but no one knows why. It "just happened". My friend Dr at work said, "I am not at all surprised that you clotted again". Really? And hes right, I have heard it before, once you clot a vein, it has a high tendency to clot again, its damaged goods. Sweet!
My clots are what comes first. But its what these clots do to me thats the problem! My Gallbladder is damaged, my spleen is HUMONGOUS, one of my lobes of my liver is now gone b/c a permanent blood clot has destroyed the veins going to that lobe. Thank goodness your liver regenerates itself and my left lobe has now grown to compensate. Then the big risk is those "VEINS". When I say that, I mean the huge, ugly, varicose veins that have been created by my body to get around these clots and like going around my stomach and esophagus. These "veins" aren't supposed to be there. They are not the ones clotted, they are a major highway that my body has made in defense to get the blood it needs from somewhere else. Isn't it just AMAZING!!!! I am sooo mind-boggled when it comes to how the Lord made us. These "veins" scare the crap out of me to be completely honest. I don't feel them, I don't know when they are there, but if they are there, that means I have a "clogging" problem going on and things aren't flowing well and these "veins" could hemorrhage the bigger they get. This morning I started coughing up blood clots....Coincidence? Maybe. Is it b/c they increased my blood thinner? maybe. Are they those "veins" leaking? Maybe. IF they leak or burst, I could easily die. I will never forget the words of my awesome Dr. Serini "if you do nothing about them, within one year you will die". Why? Think about it. How are you going to stop ruptured veins inside of you? Its not like you can put a bandaid on them. You can't put pressure on them inside your throat. (well there is a helmet in the ER's I have discovered with a huge tube they would put on me and insert the tube to inflate and push against my throat) Can't you just picture me with a football helmet on laying in the ER....Eeeewww! That scares the crap out of me just thinking about it!!!
So, we will see. Back to 2 injections daily for life, I knew that was going to happen. I am awaiting my Dr Serini to call me today I hope, to get me into that office asap so we can see if there are those "veins" in there! And if they are, lets start wrapping them! Steve and I want to go on vacation to the Dominican, I haven't booked it yet, b/c last time I did, Dr. Serini told us not to go b/c my veins were too big and I needed to be within 5 min. of a hospital....Your not going to see me going anywhere until I know what those veins look like. So, hopefully its soon. I HATE getting them wrapped b/c it hurts for days and I can't eat. But I don't have any choice so I try not to complain.
You all know me, I am a strong little cookie. I am thankful each and every day that it is me, not someone else, and especially not my kids. Cancer is a reality in my eye every single day I go to work. I am alive, what I have is livable, and I thank the Lord every day that it is this and not that. God has been so good to me through all this. He has shown himself to me, made my marriage 10xs stronger, made me closer to my patients, more serving to others, more appreciative of my life, my health, made my faith alive, and if my sickness is what it takes to make all of that happen, then I would do it all over again.
Friday, December 31, 2010
A BUMP IN THE ROAD OF LIFE.....MY DISEASE HAS COME TO LIFE AGAIN
1. Nothing in life is coincidental but totally providential. God has blessed me in so many ways, the Dr.'s he placed on my case, the procedures I didn't get...at the time I didn't realize how much His hand was in it all. I didn't pick those Dr.'s, I had NO CLUE what I was doing. But He did.
2. I realize now who my true friends are and those that are NOT my friends but only if it is convenient for them or if they gain something out of it. This has been really hard on me b/c I had alot of people in my life I thought were my idea of what a true friend is, and they have obviously shown their true colors. There are some that really DONT care and I thought they did.
3. I realize what really matters in life....SOOOO many things I come across now and I really don't care. My whole perspective has changed b/c theres such trivial things that happen every day and in the end "WHO CARES!" God has your life in His hands and could have your life end at any minute, do we live that way? I admit I struggle too with this, but this has definitely made me more mindful of that fact and Christ is really all that matters.
So I have been without Dr's appointments, tests, scopes, CT's all that for one year and it has been GREAT! I feel good, they gave me a clean slate, back to running and working out, I even ran a few 5ks and got first place! Holy moly can you say to GOD be the Glory for that!!! It seems like a long time ago, fainting memories of terrible times.
Had my year follow up CT. I feel great, no signs, no symptoms, I inject blood thinners daily so I didn't anticipate anything happening in there. It showed a new blood clot going down a different vein, this one the vein that feeds my intestines, and it is coming into that vein that was clotted before going to my liver. It looks like my veins in my stomach and throat are coming back in number and in size too. This was hard.....Why if I am on blood thinners am I STILL clotting? Why if I have NO blood disorder like they say am I clotting? The veins are back that means they could hemorrhage and I could bleed to death being on blood thinners. SOOOO many thoughts running through, I cried all morning at work. Its weird being on the other end of things when you work in a hospital....But it has taught me HUGE sympathy for my patients and we have things in common and I can be a witness to them too.
Back to the drawing board. I called my surgeon at UofM, he is getting the CT in the mail. I go to Cancer and Hematology on tues to talk about what this means and I am sure I will be having a scope done soon to take a peak at those "veins" in my throat. Its such a complicated thing that I have.....So mysterious, I understand it in and out...I have high blood pressure inside of my veins "portal hypertension" not the kind of high blood pressure you and I think about when it is said, this can't be measured except getting inside my veins.
My running days may be done. That will be hard on me b/c I love running and honestly, when I run, I think about all I have been thru and how amazing the Lord has been, its actually a time of worship for me....call me crazy, but I think about HIM the whole time I am running b/c I am alive!!! b/c of HIM!!!
I think of it as Satans attempt to test what Lisa is all about. How strong is her faith and we will see about that! Well, I am ready to take that challenge, I am more prepared, It is what it is, I have a God WAY bigger than he is and I know we can win this battle. I know he places battles in our way each and every day but I am equipped with the knowledge and truth and I will NOT be knocked down. Oh ya, I have my days that I hide at home, I don't want to talk to anyone, I cry and cry b/c of a heavy heart.....But I know I will be ok. He gives me peace, I know where I am going if He decides to take me. I am ready to fight again!
Wednesday, November 17, 2010
Wow, Life gets busy!!!
I did this with my own health too, but I know why now, I didn't at the time I was going through it and it was the worst time in my entire life, I thought I was JOB in the bible and didn't know how I was going to get through it, ONE thing after another, many people don't understand how low I was, how fearful of death, so sick, death was knocking on my door!! But what about this mom, she won't be alive later to look back and see why, she doesn't have a chance to have it change her life forever b/c she will be gone!
If I could die today and go live with the Lord would I say, take me Lord with open arms? I have to admit that I can't......That alone that I say that to the Lord makes me feel ashamed and sad b/c why? I SHOULD want to be with him today. It sure would beat the world and day in which we live!!! People are so mean, friends have turned their backs, women (I thought this would change the older I got too but that was a delusion) why can't they all just be happy for each other and support one another with love and friendship. Why jealousy? Why are we envious and why can't we be proud when their kids are better than ours? Why can't women say, she sure is beautiful, and not think, man she must be a bitch. When someone is crafty, why can't we say, you are so talented and creative what a gift, instead of thinking and rolling our eyes, there she goes again! I have to be honest, I have been hurt by soooo many people in my life and I just don't understand why? You know what? NO one in this world could give a shit and I am just beginning to realize that. No one cares. No one cares what kind of house you live in, what you drive, who you know, where you have been....ALL THAT MATTERS IN YOUR HEART WITH THE LORD. I have to Lord in my heart and I don't know what I would do without him. He is my everything and I do want to live with him. I wouldn't even know what I was missing nor would I care. The one thing obviously that keeps me here....My husband and my kids. I want and pray that I am here for them through their phases of life, to cheer them on, to support them, teach them, hold them, love them, be excited with them....Children are amazing and truly a gift from God.
I'll be honest, I don't spend as much time with my kids as I should, but I know it and I hate it. I love them more than anything and it is my prayer to be a better mom....I don't want to look back and say "why didn't I do more with them?" I don't want to be dead and have them wonder why mom needed a clean house, or sat on the computer, cleaned, did things that she shouldn't even care about!!! (Ok, I am not that bad and am probably being hard on myself b/c I DO alot with my kids) but I constantly remind myself of it. Because like I said before, No one gives a shit. I love my kids, they are so beautiful, I could lay in bed for hours staring at their little faces, smelling their blankies, just watching them....They are amazing, I cry b/c I can't have more! But, the Lord gave me 2 little miracles and I am going to try to be the best mom I can, mistakes in all!
Wednesday, September 15, 2010
SUMMER'S END
Tuesday, August 31, 2010
Metro Cruise 5K FIRST PLACE!!
Summers Ending??? So soon???
Karlie is so beautiful, growing up so much, she is starting to push mom away alittle more every day b/c she's "too cool" for mom. Breaks my heart.
Luke, he is my stud and I just can't get enough of him. He is at that great age where he is funny, and just so cute! I never thought the 2's were bad, for me, it hits when they turn 3. So far, he is just awesome. I love them both sooooo much, I honestly don't know what I would do without them. I love being a mom and pray that I am here to do the job for a very very long time!!
Saturday, July 31, 2010
PRAISE THE LORD!!! FIRST 5K!!!

I told the Lord that I wanted to do one for him. I didn't care how I finished, I just wanted to praise and bring glory to God for all he has done for me. A honor to Him for my life. I almost could have died last year.....I was told, absolutely NO more kids, No more running/ anything physically active. My heart was so heavy just a year ago....I was again, filled with fear, fear that I was going to die and leave behind my family. I didn't care about the running or activitiy, shoot wouldn't everyone want to be told they had to do nothing? :) No one knew what to do with me medically, I was an "unknown, medical mystery". Something I did NOT enjoy being. But, then it all went away.....By the grace of God, I am for the most part, a healthy 33 year old woman/mom/wife/sister/daughter. I live on Lovenox injections and that keeps me alive.
So today I ran. I ran as hard as I could and let me tell you....I thought I was going to die! For the past 3 weeks I have been sick with bronchitis. I signed up for my race and got sick the day after....Great! I sucked it up and kept running, but I never thought I was going to make it. The last mile, I just looked in the sky and prayed, "please Lord, fill me with your strength and help me finish this, I can do this and I want to do this for you, I cannot finish without you."
I finished.
I watched the awards handed out and then I heard: Lisa Jongsma!
What?
I finished 2nd! I got a medal for 2nd place out of 70 women my age!!! I finished 182nd out of 949 participants!! Did I just do this????????
I was so overwhelmed, so shocked, still am. To God be the Glory!
I got home and just bawled. Why? B/c HE helped me win. He filled me with strength and I know HE held my hand and he is celebrating with me! My Lord is so amazing and so wonderful, I never want to forget all that he has done for me. I want to live each and every day in remembrance of where I was last year, where I am today, and how the Lord held my hand each and every step!!! I wish everyone knew Him, and could see how truly blessed we are. HE did it! Thank you so much Lord, I can never say it enough. I praise and thank you for everything, THANK YOU for helping run in this race of life!!!
Thursday, July 15, 2010
Been a long time!
Monday, March 22, 2010
Saturday, March 13, 2010
Do my children hate me?
I would do anything for my kids! I take them to McDonalds to play, VIP pets to visit animals, were going to Nemo on Ice just the 3 of us, I get them icecream or slushies b/c its their favorite, I take them camping all the time by myself, I take them on bikerides, to parks....The list could go on forever!!!! I play games, even play "underwater fishy" in the bathtub with Karlie b/c she loves to do it with mom. Why do my kids go from fine to absolutely crazy and dramatic the second dad comes home. Even when I was in the hospital and would miss them so much for days, I would walk in the door and they would go runnning right past me to dad. Makes me cry. Is it b/c I am a mom, a part time working mom and home with them alot? Can I fix it? Maybe the other moms feel that way too and I am just normal. Whatever the case, I hope someday they will appreciate and love me and thank me for all the love I continue to pour on them even when they don't love me back.....Being a mom can be so hard sometimes!! :)
Tuesday, February 2, 2010
Outta here!
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.
Sunday, January 31, 2010
I'VE SEEN MIRACLES HAPPEN
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 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
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
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
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
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
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
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
"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
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
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!!